Celebrating International Ataxia Awareness Day

Walk n’ Roll EventsThe National Ataxia Foundation (NAF) ispleased to report that NAF Ataxia SupportGroups and members across the country hostedvarious Walk n’ Roll for Ataxia events in cele-bration of International Ataxia Awareness Day(IAAD) held each year on Sept. 25.Starting on Sept. 18 the first in a series of2010 IAAD Walk n’ Rolls for Ataxia began inSt. Louis Park, MN, hosted by the Twin CitiesAtaxia Support Group. Approximately 200people attended this ataxia awareness event thatraised more than $50,000.On Sept. 25 NAF ataxia support groups and

members from across the country including theCentral Texas Ataxia Support Group, DetroitArea Ataxia Support Group, Los Angeles AtaxiaSupport Group, Northern California AtaxiaSupport Group, Omaha group, Orange CountyAtaxia Support Group, and San Diego AtaxiaSupport Group held their Walk n’ Rolls forAtaxia. The events raised the level of ataxiaawareness in those communities and raisedfunds to help support the important work of theNational Ataxia Foundation.Additional Walk n’ Rolls were held on Oct. 2hosted by the Seattle Area Ataxia Support Groupand Dewayne’s Run n’ Roll in Gilbert, SC,raising funds and bringing ataxia awareness toboth the east and west coast.New this year was the NAF Virtual Walk n’Roll for Ataxia with Lynda Howell as the virtualtour guide. This virtual walk across the UnitedStates boasted over 60 participants and raisedmore than $13,000 in donations – generatingataxia awareness across the United States andbeyond.The grand total of funds that NAF receivedfrom these events and from the sale of IAADmerchandise was over $155,000. The new IAAD“I am the Strength Behind Ataxia” t-shirt,

GenerationsThe Official Publication of the National Ataxia Foundation

Volume 38, Number 4Winter 2010-11

Celebrating InternationalAtaxia Awareness Day

Continued on page 3

Inside This Issue• Annual Membership Meeting informationand registration forms appear on pages18-32

• Photos and write-ups from InternationalAtaxia Awareness Day Activities are onpages 1-7

• A new and improved directory listing NAFChapters, Support Group leaders andAmbassadors debuts on pages 45-49

• News from the Society for NeuroscienceMeeting appears on page 36

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Page 2 Generations Winter 2010-11

Generations is published by the National Ataxia Foundation, Inc., Minneapolis, MN.Copyright 2010 by the National Ataxia Foundation, Inc. All rights reserved.

To reprint articles from Generations in other publications, please contact Liz Werner at [email protected].

Generations Staff:Julie Braun .....................................Financial DirectorSue Hagen ...........................Patient Services DirectorMike Parent....................................Executive DirectorLori Shogren....................Special Projects CoordinatorLiz Werner.................................Outreach Coordinator

Design, Production and Printing..............Leader Printing

DisclaimerThe National Ataxia Foundation does not endorse products, services, or manufacturers. Those that arementioned in Generations are included only for your information. The NAF assumes no liability whatsoever forthe use or contents of any product or service mentioned in the newsletter.

Please direct correspondence to:National Ataxia Foundation2600 Fernbrook Lane, Suite 119Minneapolis, MN 55447-4752

Phone: (763) 553-0020FAX: (763) 553-0167Internet: www.ataxia.orgE-mail: [email protected]

Annual Membership Meeting2011 AMM Preview ..................................... 18Frequently Asked QuestionsAbout the AMM ........................................... 252011 AMM Agenda ..................................... 282011 AMM Registration Forms .................... 30

Research

Collaboration in Ataxia ResearchCan Provide More Answers ............................. 7Race and Ethnicity Information Needed ........ 38

Articles

IAAD Recaps and Reviews ............................. 3Volunteer Spotlight: Tommy Zhu ..................... 9Ask About Matching Gifts ............................... 9Registry Spotlight: Phuong Deleyrolle ............ 10Athena Diagnostics Introduces NewPrograms to Make Ataxia GeneticTesting Easy and More Affordable ................. 13Vehicle Donation ......................................... 13GoodSearch Is Good for NAF ........................ 14From the Desk of the Executive Director ....... 15ShopNAF.org ............................................... 26

Articles (cont.)

Society for Neuroscience AnnualMeeting Held in San Diego .......................... 36Neurologist Resource List ............................ 36There’s Still Time to Donate ......................... 36The National Ataxia Foundation’sNew ‘Regional Concept’ ............................... 39CFC Number ............................................... 52Remembering NAF in Your Will ..................... 54

Membership TopicsNAF Merchandise ........................................ 16Chapter and Support Group News ................ 40NAF Directory of Chapters, SupportGroups and Ambassadors ........................... 45Calendar of Events ...................................... 50Memorials and In Your Honor ....................... 54

Personal Stories & PoemsThe Wrong Word .......................................... 12The Carpet of Roses .................................... 14Coming to Terms with Ataxia ........................ 33My Ataxia Diet ............................................. 35

Table of Contents

The deadline for the Spring issue of Generations is February 28, 2011.


Iowa Support Group IAAD

By Emily Medina

In preparation of International Ataxia Aware-ness Day, our group contacted mayor’s officesand asked that they sign the proclamationdeclaring Sept. 25 as International Ataxia Aware-ness Day. We were successful with the city ofAdel and the city of West Des Moines. Also thegovernor of Iowa, Chet Culver, signed a procla-mation. The Des Moines mayor was very kindand supportive and invited us to a city councilmeeting where the entire proclamation was readaloud and then presented to us. It was veryexciting and a step in the right direction forawareness. Hopefully next year will be bigger andbetter!

Detroit IAAD Event

By Larry Federspiel

Sept. 25 was an excellent day for our fundraiser.The day was windy and chilly, but the spiritswere high. After the walk, there was foodavailable, and booths that attendees could visitincluding a face painting station and a boothselling the book “Still Dancing” by Gabe Ford.Our main speaker was Dr. Henry Paulson fromthe University of Michigan and the secondspeaker was Margit Burmeister, PhD (also fromthe University).Many people contributed to the success of thisevent including Troop 1148, Steve Anderson,

Winter 2010-11 Generations Page 3

Continued on page 4

designed by Lealan LaRoche, was used by anumber of IAAD fundraisers and ataxia eventsin the United States and Canada. Hundreds ofthe new IAAD t-shirts were sold throughNAF’sonline store.Additional pictures of the 2010 Walk n’ Rollscan be found onNAF’s website (www.ataxia.org)under the “Events” tab by clicking on the “NAFWalk n’ Roll” section.

Awareness ActivitiesJohns Hopkins University Ataxia CenterStudent Ambassadors in conjunction with theChesapeake Chapter held “Arts for Ataxia” onSept. 25. This event was attended by morethan 748 Chesapeake Chapter members, JHUstudents, and faculty. A video of this event canbe seen at youtube.com/artsforataxia.Ataxia support groups including the Greater

Atlanta Area Ataxia Support Group, the IowaAtaxia Support Group, the NE Florida AtaxiaSupport Group, and the India Ataxia SupportGroup, as well as NAFmembers fromDelaware,Maryland, Massachusetts, and New York cele-brated IAAD through picnics, garage sales, in-formation booths, proclamations, press releases,and other events and activities to help raise ataxiaawareness and funds to support NAF’s efforts.Proclamations declaring Sept. 25 as Interna-tional Ataxia Awareness Day were received fromthe Governors of Delaware, Georgia, and Iowain addition to the Mayors of Adel, Des Moines,and West Des Moines, IA.TheNational Ataxia Foundation is truly grate-ful to all the event lead organizers, volunteers,sponsors, donors, and participants. Because ofthese events, thousands of people across theUnited States became better aware about ataxiaand helped support promising ataxia research andprograms for ataxia families.

Celebrating IAADContinued from page 1

IAADRecaps and Reviews



Ginger Agular, the Williams family, the localEMS, and many others. All in all for our secondannual event it was great. Thanks to all whomade our ataxia fundraiser fun, informative, andsuccessful. You have to have strength!

Seek a Miracle Ataxia Group (SAMAG)Celebrates IAAD in India

By Chandu GeorgeThe Seek A Miracle Ataxia Group in India(SAMAG) celebrated IAADon Sept. 25 by host-ing an event to create awareness about ataxia inIndia. A poem written by an individual affectedby ataxia was recited and there was a ceremoniallamp lighting.As the event progressed a presentation wasgiven about the symptoms and causes of ataxia,as well as the ways individuals can help thoseaffected by ataxia. A skit about the physical andemotional challenges of living with ataxia wasperformed by SAMAG volunteers.Speeches were given by Commissioner V.S.Prasad Sastry and prominent social activistLaxmiKanthi who emphasized and applaudedSAMAG for its efforts of raising awareness andworking towards the welfare of those with ataxiain India. An IAAD proclamation was signed byChief Neurologist Dr. Anni Hasan. A presenta-tion was given about ongoing research, genetics

and ataxia by Mr. Wasim Lone.IAAD was simultaneously celebrated acrossIndian cities wherever SAMAG chapters andbranches are located. Later on, SAMAG volun-teers showcased their handmade goods such aseco-friendly bags and t-shirts. The proceedsfrom the sale of the items will go towards assist-ing those with ataxia. As a token of gratitudeSAMAG honored its volunteers who workedsincerely with great dedication and passion.Finally the vote of thanks was given by Mr.George (Sr.) thanking the chief guests and theparticipants for sharing their views on the occa-sion of this meeting and expressed heartfeltthanks for the entire SAMAG team of volunteersfor their collective efforts in making this event agrand success.SAMAG then thanked its partners includingLions club of Charminar, GMR (Vara LakshmiFoundation), Sri Narayani Peetham, Share a �

IAAD Recaps and ReviewsContinued from page 3

Detroit Area Support Group members at theirIAAD Walk n’ Roll event.

Members of the Seek a Miracle Ataxia Group (SAMAG) at their IAAD event in India.



Service, Hands of Compassion(Guntur), Kami-neni Hospitals (Hyderabad), S9 Consultancy(chief consultant SAMAG), Confederations ofNGOs of Rural India (New Delhi), BabelFamily, and the National Ataxia Foundation.The event concluded with SAMAGmembers,volunteers, and event participants singing theSAMAG theme song to show support for thosewith ataxia.

Chesapeake Chapter IAAD EventBy Carolyn DavisA full day of events was planned and executedby the Student Ataxia Ambassadors on theHomewood campus of Johns Hopkins Univer-sity in Baltimore, MD, on Saturday, Sept. 25.Planning for the event began last winter whenAshley Aaroe came up with the idea of an “Artsfor Ataxia” event to promote awareness of ataxiaon the campus and in the community and toraise funds for ataxia research. She applied for andreceived a $5,000 grant from Pepsi’s RefreshProject to cover the cost of the event.The day began with speakers talking abouttheir own journey with ataxia. These includedJohn Cernosek, a recipient of the Macklin Fel-lowship in Ataxia Edification, and Jonas andMary Beth Cepkauskas, founders of FightAtaxia! Dr. Joe Savitt also gave a brief report onthe Ataxia Center at Johns Hopkins.Other events included music by jazz musicianMark Meadows, a classic car display, and a dis-

play of photographs taken by Chapter memberLaddyOspanik. Foodwas also available through-out the day.The culminating event, and by far the biggestdraw, was the performing arts competition.Eleven student performing groups competed fora grand prize and for a “fans’ favorite” award.Attendance was tabulated at 748 based onsign-in sheets and raff le tickets. All 748 heardabout ataxia, and a number of them took thetime to speak to those with ataxia who were inattendance to get a more in-depth understandingof ataxia and life with ataxia.Other IAAD recognition obtained by chaptermembers took the form of proclamations by thePennsylvania Senate due to Bill Lee’s involve-ment, and by the Governor of Delaware at JoeDeCrescenzo’s request. In addition, an articlepublished in The News Journal of Delaware inOctober provided detailed information on ataxiawhile highlighting Joe’s journey with ataxia.

The Twin Cities Ataxia SupportGroup’s Walk, Stroll n’ Roll for IAAD

The Twin Cities Ataxia Support Group heldits first annual Walk, Stroll n’ Roll to celebrateIAAD on Saturday, Sept. 18. The idea for theevent came from the example set over the pastfew years by the San Diego Ataxia SupportGroup. The Twin Cities Ataxia Support Groupgot a late start in planning, leaving only fivemonths to plan the event. The organizing com-mittee of Tom Sweeney, Lenore Healy Schultz,Bill Bassett and Bill Sweeney set a fundraisinggoal of $10,000 and hoped to attract 75 partici-pants.The day of the event the group was greeted bythreatening skies and a temperature in the mid-40’s. Despite the weather, more than 200 peopleshowed up to participate in the walk eventthat took place in Wolfe Park in the Minneapo-lis suburb of St. Louis Park. Other activities

Continued on page 6The Chesapeake Chapter’s “Arts for Ataxia.”


included face painting and a cupcake walk forchildren, music provided by a classical stringquartet fromMaple Grove High School, and in-formation booths from NAF, Park NicolletClinic, and Courage Center. Oranges, bananas,muffins, water, coffee and orange juice weredonated by local merchants and distributed at theevent. Local radio personality Dan Hertsgaardintroduced presentations from Martha Nance,MD; Bill Meier (husband of Linda Meier, whohas SCA-3); Mike Parent, Executive Director ofNAF; and Tom Sweeney, who has SCA-1 andwas event co-chair.The Twin Cities Ataxia Support Group wasthe first NAF support group to rely primarilyupon the online fundraising tool provided byNAF to raise donations. Individuals and teams“did their own thing” in asking family, friends,and neighbors to participate in the event anddonate to support NAF. E-mails, letters, hand-delivered appeals, and notices in church bulletinswere used beginning in early August. By mid-August it became clear that the original $10,000goal was too modest ... and as more supportgroup members sent out requests for participa-tion, the goal was raised every few days. Withover $22,000 raised online and almost $5,000donated the day of the event, the group farexceeded any first-year fundraising expectation!As the event program closed and the estimatedamount raised was announced, an SCA-1 familymember surprised everyone by announcing thatshe and her husband would match the totalamount raised!The event’s success was due to many factors –the encouragement and participation of manysupport group members, food and drink dona-tions from several local merchants, the efforts of30 volunteers, but mostly due to the support offriends, family, neighbors and fellow churchmembers who gathered on an unseasonablychilly Saturday morning to support individuals

with all types of ataxia and their families.

San Diego Walk n’ Roll for Ataxia

By Earl McLaughlinThe San Diego Ataxia Support Group cele-brated International Ataxia Awareness Day byholding the Fourth Annual CharleyMcLaughlinWalk n’ Roll for Ataxia, honoring DavidGladden. The Walk n’ Roll took place on thebay-front in beautiful downtown San Diego.A total of 350 walkers and rollers helped raiseawareness about ataxia, and more than $32,000for ataxia research. Both totals were nearly 30percent higher than those of the event last year.In attendance this year was Mike Parent,NAF’s Executive Director, and his wife Renae.In an e-mail to the San Diego Support GroupMike wrote “I want to extend to [EarlMcLaughlin], Ann [Foster, co-chair of the SanDiego Walk n’ Roll], the planning committee,the San Diego Ataxia Support Group, and allwho were involved with the 4th AnnualWalk n’Roll my sincerest and heartfelt thank you. Theevent was awesome! Renae and I truly enjoyedour time at the Walk n’ Roll. The venue wasoutstanding and the event was very well plannedand executed. The Opportunity Baskets wereincredible ... I know that much work wasinvolved in getting all those wonderful itemsdonated and the beautiful presentation of thebaskets. Kudos! Thank you all for all you do insupporting the important work of the NationalAtaxia Foundation. Your commitment has aprofound impact on NAF’s ability to supportimportant programs and services. Thank you.”Walk n’ Roll – SanDiego was named inmem-ory of Charley McLaughlin who passed awayfrom complications of Friedreich’s Ataxia in2007. This year’s honoree was David Gladden, amember of the support group. In a competitionheld to recognize the top three pledge collectors,Danielle Rose came in first.There were over 75 volunteers working at theevent. The Planning Committee members �


IAAD Recaps and ReviewsContinued from page 5


were Earl McLaughlin, Ann Foster, Pat Ward,Jane Jaffe, Joan Hay, Lisa Jaffe, June Wood,Pamba Carolan, Linda Anderson, Harold Ward,Larry Jaffe, Walter Wallenborn, and RogerWood.Sponsors of theWalk n’ Roll were Century 21Award, Farmer Insurance –ClinkenbeardAgency,Ben Bridge Jewelers, Cookies byDesign, StokelyConstruction,HorizonHospice,NicholasWoodsFriedreich’s Ataxia Foundation, Rosie’s Rentals,Sempra Employee GivingNetwork, Southwest-ern REACT, T-Shirt Mart, Unified Port ofSan Diego, Viejas Band of Kumeyaay Indians,Inferno Productionz, Hilton – Los AngelesAirport, Raceplace Magazine, TherapeuticAsian Bodywork, A-1 Self Storage, SeaWorld,UBS and Universal Studios – Hollywood.

The Fifth Annual Charley McLaughlin Walkn’ Roll for Ataxia will be held in honor ofBarbara Doogan on Saturday, Sept. 24, 2011.


Walk n’ Roll – San Diego raised more than$32,000 this year.

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Collaboration in Ataxia ResearchCan ProvideMore AnswersAt a conference on Clinical Research for RareDiseases held in September, approximately 300researchers, physicians and patient advocacy rep-resentatives who have an interest in rare diseasealong with NIH staff gathered to discuss thechallenges and opportunities in rare diseaseresearch.A disease is considered rare if it affects less than200,000 persons in the United States. There are6,500 to 7,000 rare diseases which currentlyaffect 25 million Americans. When you add tothat number the family members and caregiversof those with a rare disease, it has becomeevident that rare diseases, such as the ataxias,deserve more research.Some of the challenges that rare diseaseresearch faces are:• Small numbers of patients available for studyand clinical trial enrollments• Lack of patient registries and biobanks or

specimen repositories• Lack of validated measures of the naturalprogression of the disease• High cost of drug development for a smallpopulation• Difficulty in designing or choosing a studydesign for the small populationIn spite of these challenges, there are greatopportunities in rare disease research. Multi-center research and clinical research networks arebecoming more prevalent. The Rare DiseasesClinical Research Network (RDCRN) is madeup of 19 distinctive consortia that are working inconcert to improve availability of rare diseaseinformation, treatment, clinical studies, andgeneral awareness for both patients and themedical community.

Continued on page 8



TheNational Ataxia Foundation is the patientadvocacy representative for two of the NIHfunded research consortia – Clinical Investiga-tion of Neurologic Channelopathies, (CINCH)which represents Episodic Ataxia and ClinicalResearch Consortium for SpinocerebellarAtaxias (CRC-SCA), which is a network ofphysician scientists, and clinical researchresources dedicated to conducting clinicalresearch in Spinocerebellar Ataxia. More infor-mation can be found at the website www.RareDiseasesNetwork.org.Although this quote from Patrick J. Kennedy,a member of Congress, is about collaboration inall the neurologic diseases, it also is true forpartnerships between those doing research inataxia: “The brain has often been called the lastfrontier of medicine. Though themajor advancesoccurring in this field are numerous, they stillpale in comparison to the gaps that exist in ourability to prevent, diagnose, treat, and cure manyof the common neurologic disorders that aff lictAmericans today. Currently, there is a criticalneed to break down the silos that cordon off eachindividual community of brain science research.Though one group’s focus may be Parkinson’sdisease while another group may concentrate ondepression, an advance in neuroscience researchthat leads to progress in one area accrues to thebenefit of us all.”That type of collaboration was evident at arecent face-to-face meeting where 10 ataxiaresearchers and their research coordinatorsdiscussed the on-going spinocerebellar ataxianatural history study, the importance of theNational Ataxia Registry, plans for future clini-cal drug trials, and reviewed their goals.

Goals of the Clinical Research Consortiumfor Spinocerebellar Ataxia:• Enroll a large group of patients with Spin-ocerebellar Ataxia 1, 2, 3 or 6 into an observa-

tional cohort study (where subjects are followedover time and clinical data specifically for re-search are collected at regular intervals).• Establish a patient contact registry.• Discover new laboratory markers of diseasethat will lead to better treatment and deeperscientific understanding of the causes of thisdisease.• Develop improved methods for studyingSpinocerebellar Ataxia.• Work with spinocerebellar patient supportgroups to help those patients who wish to beinvolved in research and connect with thosescientists who are conducting the research.• Help other scientists do more research onataxia by providing specimens and clinical datafrom the CRC-SCA for analysis.• Train new young investigators in the field ofspinocerebellar ataxia.• Construct and maintain an electronicwebsite resource with significant informationfor clinicians, researchers, and patients.Dr. Tetsuo Ashizawa, the Principle Investiga-tor for this consortium said, “Thank you forcoming to the meeting. We had a very informa-tive meeting with great discussions. I am veryproud of our group. The strength of our group is,of course, dedication and team work. But wecannot forget what powerful members we have!Every investigator is capable of taking this groupto the next phase.”In addition to Dr. Ashizawa, the investigatorsand their research coordinators include Dr.Khalaf Bushara and Diane Hutter, Dr.Christopher Gomez and Vickie Staszak, Dr.Hank Paulson and Elizabeth Sullivan, Dr. SusanPerlman and Tarshia Nulliah, Dr. Stefan Pulstand Pattie Figueroa, Dr. Jeremy Schmahmannand Jason MacMore, Dr. S.H. Subramony andPhuong Deleyrolle, Dr. George Wilmot andBettye Robinson, Dr. Sarah Ying and BrianJung, and Dr. Theresa Zesiewicz and KellySullivan.

Collaboration in Ataxia Research ...Continued from page 7

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Volunteer Spotlight:Tommy ZhuTechnology Volunteer for the National Ataxia RegistryTheNational Ataxia Foundation (NAF) wouldlike to recognize software developer and infor-mation technology specialist, TommyZhu for allthe hard work and volunteer hours he devotedto help create the National Ataxia Registry,NAF’s ataxia patient registry.Mr. Zhu resides in Australia,where he is a senior software de-veloper at HP. He is a MicrosoftCertified Solution and Applica-tion Developer and is experiencedin working with a variety of Mi-crosoft products.Also lending their expertise tothe registry were volunteer tech-nology specialists Bill Hartnett andMarty Ohman. The two assistedMr. Zhu in providing essentialsoftware development and projectplanning for the registry. Mr. Ohman served as aconsultant in finding a site hosting service andaddressing security issues. Mr. Hartnett was thelead organizer of the group and providedprogress reports as the project moved forward.As part of the project follow-up, Mr. Zhuand other members of the technology team par-ticipated in weekly conference calls with theother registry teammembers, including Dr. S.H.Subramony, coordinator PhuongDeleyrolle, andNAF Patient Services Director, Sue Hagen.Showing incredible dedication to the project,Mr. Zhu was kind enough to arrange his sched-ule around the needs of the registry team in theU.S. for phone calls and follow-up. “We owe adebt of gratitude to software developer TommyZhu, who would wake up in the middle of thenight to accommodate the U.S. time zone forthese conference calls,” said Sue Hagen, PatientServices Director at NAF. These weekly phone

calls often involved discussing the technologyrequirements of the registry and other itemsessential to its development.As the sole developer of the registry, Mr. Zhuprovided all design, code, and unit testing of

the application. He continues toprovide technology support tokeep the registry functional andeffective. “Tommy Zhu’s techni-cal expertise has been invaluable inestablishing a state-of-the-art ataxiapatient registry,” saidMike Parent,NAF Executive Director.The National Ataxia Registrywas launched in March, 2010and contains over 680 registrantsto-date. The registry is an impor-tant tool to connect those withataxia to the researchers who are

seeking treatments and cures for these disorders.NAF is truly grateful for Tommy Zhu and thehundreds of volunteer hours he logged in help-ing to create this vital tool for ataxia research.

Tommy Zhu

Did you know that many employers willmatch your donation to the National AtaxiaFoundation?If they do, for every dollar you contribute tothe important work of the Foundation, anadditional dollar is contributed, bringingeven more help and hope to ataxia familiesacross the country.Please ask your employer if they have aMatching Gifts Program. If they do, pleaselet your co-workers know about the impor-tant work of the Foundation.

Ask AboutMatching Gifts

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Spotlight:Phuong DeleyrolleTeam Member for the National Ataxia Registry

Phuong Deleyrolle (pronounced Fyong D’lahull) joined the National Ataxia Registry team in Novem-ber 2009, just as the registry prepared to launch. Phuong was integral in getting the registry up-and-running and has been involved in the collection and maintenance of registry data since going live with thesite. A native of France, Phuong brings with her a medical background and a passion for working withpeople. The National Ataxia Foundation caught up with Phuong recently in a “Question and AnswerE-Interview” and would like to share her responses and introduce her to our membership.

Q) What is your professional background andwhat kind of work did you do prior to coming tothe National Ataxia Registry (NAR)?PD) I graduated from IFSI Montelimar Nurs-ing School in France. I first worked as a f loornurse in a pediatric surgery ward of CliniqueSaint Jean (Montpellier France). I later workedat an institute specializing in cancer treatmentand research: Centre de Recherche et de Lute duCancer Val D’Aurelle.I moved from France to follow my husband toAustralia for his post-doc training in cancer stemcell research. We relocated to the United Stateswhen his lab moved to theUniversity of Florida.In Gainesville, I work as Clinical ResearchCoordinator for the Department of Neurologyat the University of Florida with Drs. Ashizawaand Subramony.

Q) What does your position involve? Describea “typical” work day.PD) Most of my work consists of recruitmentand regulatory [tasks] for the National Ataxia

Registry. I handle daily phone calls from patientsand study participants, meet with ataxia supportgroups to present our studies and the NationalAtaxia Registry and recruit participants.I also spend time on coordinating efforts withthe software group (especially Tommy Zhu) inmaking sure the [Registry] web pages are exactlyas we want. I have regular meetings with Dr.Subramony to update him on the issues. Sometime is spent helping with the Natural HistoryStudy (we usually see two to three patients permonth). For this also, I participate in recruitmentand the regulatory issues.

Q) Explain the purpose of the registry? Whyis it beneficial for individuals with ataxia?PD) The purpose of the registry is to collectthe demographics and clinical information ofall people aff licted with ataxia for future clinicalresearch. Ataxia is a rare disease and finding par-ticipants for a clinical trial can be challenging.The registry will facilitate the recruitment forfuture clinical research and expedite the start ofnew trials.Recent important discoveries on ataxia havebeen made and the purpose of the NationalAtaxia Registry is to get ready to start clinicaltrials by maintaining information on patientswith ataxia and by allowing rapid contactbetween patients with specific forms of ataxiaand researchers who may want to offer theirstudy to registry participants.

DeadlineThe deadline for the Spring issue of

Generations is February 28, 2011.Please submit articles to Liz Werner at

[email protected] or send them to the addressshown on page 2.

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Q) What does signing up on the registryentail?PD) Signing-up on the registry will facilitatecontact between ataxia researchers and potentialparticipants to clinical research.We will collect your contact informationand clinical information like your diagnosis, age,your age when the symptoms started, and yourneurologist’s contact information. All of thisinformation is kept in a protected web server andonly the National Ataxia Registry research teamwill have access to it.[Signing-up] in the registry doesnot guarantee you will be selectedfor a clinical trial, but it will in-crease your chance to be informedand recruited for a new study.Being in the registry does notoblige you to participate in a proj-ect in which you do not wish to beinvolved. The enrollment processfor upcoming projects is inde-pendent of being in the registry.And if you are eligible for a futureataxia research project you will stillhave the choice to participate ornot.If you are not comfortable with being con-tacted directly by researchers, you can opt to becontacted by the National Ataxia Registry toinform you about a research project opportunityand give you the contact information for theresearchers.Signing up on the registry is a three-stepprocess. Each process will take you fewminutes.

Step 1:Go to www.NationalAtaxiaRegistry.organd start your self-registration. At that point,only your name and demographic informationwill be collected. You will be asked to create apassword. Please note it down as you will needthis password to login in your account.

Step 2:You will then be listed in the NationalAtaxia Registry but not “enrolled” yet.You will then be contacted by phone and will

be explained in detail the purpose of the registryand [will have the opportunity] to ask questions.If you agree to participate in the registry we willask you to sign a document called the “ConsentForm” and send it back to us with a copy of yourDNA test results if you have a genetic type ofataxia.

Step 3:Once we receive your signed consentform, we will “activate” your account and sendyou an e-mail to let you know that you can loginto your account to enter your clinical informa-tion in the National Ataxia Registry.

If you have lost your password,you can call us or e-mail us and wewill reset it for you. If you have anydifficulty, you can call the registryoffice at (352) 273-9194. We willbe happy to assist you along theregistration process.

Q) Since launched, what hasbeen the response to the ataxiaregistry?PD) We recruited our firstparticipant in March 2010 duringthe NAF annual membershipmeeting. To date, 683 ataxia

patients have registered. Some ataxia researchershave shown their interest in the registry and willsubmit their protocol.

Q) What do you enjoy best about your posi-tion as coordinator of the NAR?PD) I really enjoy knowing that this workand the creation of theNational Ataxia Registrywill further all future efforts in ataxia researchby organizing important information aboutthe ataxia participants and their families. Thecontact with the ataxia patients and theirfamilies is most rewarding.

Q) What do you enjoy doing in your free timeoutside of work?PD) I love to take my children to DisneyWorld.My personal hobbies are yoga, eating outat new restaurants, and visiting the many beauti-ful beaches of Florida.


Phuong Deleyrolle

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TheWrongWordIt Means Too Much to Mean AnythingBy Gary Karp

In the workplace, “disability” literally means“can’t work.” One “goes on disability.”Yet people with disabilities – according to thenew paradigm of Modern Disability – are unde-niably more able to work than ever before in his-tory. More and more, “disability” does notequate with inability. More and more, having adisability need not equate with failure to perform- any more than for anyone else who is properlyhired into a position they are qual-ified for.So there are different thingsgoing on here. There is indeedsuch a thing as a disability that pre-cludes someone from doing whatthey might have been doing be-fore. A diamond cutter who losesher vision certainly is disabled inthe context of that job. She is notgoing to be able to identify anaccommodation or an adaptivestrategy to continue performingthat “essential task” (in humanresources parlance) of the job.But her blindness does not preclude her abilityto work. In other words, disability is contextual.Given the right job in the right setting with theright set of tasks, given the tools she needs, herblindness becomes a non-issue. Just ask KareemDale, White House Disability Policy Advisor,and an accomplished attorney - who happens tobe blind.Often it is an artificial obstacle that disables, notthe physical, sensory, or cognitive characteristicsof the person (as in paralysis, blindness, or de-pression, for instance). As a wheelchair user, itwas the presence of steps and the absence of a

usable bathroom that would have prevented mefrom working. My disability is not a disability atall in the information-based workplace. Get mea desk and a computer, and my options areimmense. The ways in which I can contributeare substantial.So in the paradigm of Modern Disability, theword has a whole new meaning, or better put, arange of meaning. It has to be understood in the

context of how that disability in-teracts with the overall environ-ment, how people are capable offunctioning with or without adap-tation to performwhat is required.Their disabilities have to be un-derstood in terms of who they areas people, how they have preparedfor the work they choose to pur-sue, and what their visions andgoals are for themselves.All of this is true regardless ofthe disability, the significance ofits impairment, whether visibleor invisible, from childhood or

acquired, or whether the person even identifieswith having a disability.We’re pretty much stuck with the word itself,so we at least have to bring its connotation up todate, and not fall into the automatic assumptionthat a “disability” means “inability.” In the cur-rent state of the disability story, that just ain’t true.

Gary Karp is an internationally recognized publicspeaker, corporate trainer, facilitator, author, andeditor. As a corporate trainer on disability and em-ployment Gary makes the business case for workingwith employees with disabilities. More informationcan be found at www.moderndisability.com.

Gary Karp

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PhotobyCharlieSamuels.com



Athena Diagnostics Introduces NewPrograms toMake Ataxia GeneticTesting Easy andMore AffordableAthena Diagnostics is the leader in genetic

testing for ataxia, offering testing for 19 disease-causing genes. Athena has provided diagnosticanswers to thousands of patients; answers thatcan make a difference in patient managementdecisions.It’s no secret that health care can be costly.

That’s why Athena has taken steps to reduce costburdens presented to patients due to insurancecoverage or financial hardship.The AccessAthena™ Program creates an

avenue that allows more patients to have accessto the valuable genetic testing offered by Athena.The program not only includes specimen collec-tion options which make it easy for a patientto have their sample drawn, but also a financialsolution to reduce the amount a patient may haveto pay. Here’s how it works:Most commercially insured patients can enroll

in Athena’s Patient Protection Plan. The plan isfor patients with a commercial insurance planthat Athena does not have a contract with (out-of-network). Under the plan, the total amount apatient would have to pay is 20 percent of thebilled charges or $500, whichever is less. Certainrestrictions apply. Those restrictions can befound at www.AccessAthena.com/eligibility.If a patient finds the $500 maximum payment

to be too expensive, they can break it up intothree monthly payments.For those patients who may not qualify for the

Patient Protection Plan, Athena will still handleall insurance billing and appeals processing. If abalance remains after their insurance has beenbilled, that balance can be split into installmentsto make the payment more manageable.Athena has also implemented the Financial

Assistance Program to mitigate cost restrictionsto patients who are on Medicaid or who areexperiencing financial hardships. These patientsare offered a 75 percent discount.Athena has implemented these programs

because they understand how important theanswers obtained from genetic testing can be.Like most health care providers and consumers,Athena believes that cost should not get in theway of providing excellent care.“The program is designed to make our testing

accessible and easy for as many patients as possi-ble. We know how important these tests are andwe know that physicians rely on them.We don’twant cost to get in the way,” said Aaron Keyes,Manager of the Access Athena Program.Athena has created a website specifically

designed to address its commercial insurancereimbursement policies and programs. To viewit, go to www.AccessAthena.com. Other questionscan be directed to Athena at 800-394-4493.

Information for this article was provided courtesy ofAthena Diagnostics. �

Donating a vehicle to the National AtaxiaFoundation will help support the importantwork that is being done on behalf of all whoare affected by ataxia.To donate a car, truck, or motor home, call

the NAF office at (763) 553-0020. The ve-hicle will be picked up at your home,office, or other place that you designate.Be sure to have the certificate of title withthe vehicle. Thank you for your donation.

Vehicle Donation



It was a typical July day in Savannah, GA, withtemperatures in the high 90s.We had just buriedmy son on Tuesday in Bonaventure Cemeteryand my heart was heavy with sadness. He hadbeen courageous in his battle with ataxia and hadleft us too young and too soon.Mymind traveledback to the scene and the beautiful carpet of redroses adorning the soil where he was buried, stillfresh after three days of use at the visitation andcelebration service in Birmingham, AL, andtravel to Savannah. I thought of my husbandburied beside him and visualized the same imageof a carpet of red roses, red roses that both of myloved ones had used to remember me on specialoccasions.During the rest of the weekmy family, though

grieving themselves, cared tenderly for me, myother son and family and Rick’s four children.On Friday my two sisters and I went back to

the cemetery and as we stepped out of the car

we noticed immediately the carpet of roses hadturned black, but wait - there, in the center ofthe blackness was a red rosebud just opening witha yellow petal standing up behind it. My heartleaped! What did this mean? After days in theintense heat, how could this rose be alive whenall the rest were dead?Wewere silent and in awe,as if we were on holy ground. I knew God wasspeaking to me. He was letting me know Rickwas just fine; he was alive! My sisters agreed thatGodworks inmysterious ways andwe agreed thelive rose was a sign. We were silent as we droveaway and contemplated what we had just seen.I felt comforted and peaceful.My sister and I left on Saturday to return to

Birmingham. The night before, I told my sonand family about the single alive rose bud in thecenter of the black carpet of roses. They were togo to the cemetery on Saturday and then travel totheir home on Sunday, and I asked them to callme after seeing the rose. I wondered if and howit could still withstand the extreme heat. I got thecall late the next morning. My 15-year-oldgranddaughter exclaimed excitedly that, yes, therose was very much alive! That family of five alsofelt the hope and comfort they needed. Theytraveled back to their home, drove into theirdriveway and a tire went f lat; again, we thoughtof God’s providential care.The image of the red rose in the carpet of black

will forever be a joyous memory for me. It willalways be a reminder of how precious life ishere on earth and the life we have before us inthe future. It will continually assure me that myloved ones are never far away.Becky DonnellyCaregiver of Fred W. Donnelly andFred W.“Rick” Donnelly, Jr.

The Carpet of RosesBy Becky Donnelly

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GoodSearch IsGood for NAF

Did you know that donating money to theNational Ataxia Foundation is as easy aschanging your Internet search engine?GoodSearch.com is a search engine that

donates 50 percent of its revenue to thecharities and schools designated by itsusers.Simply go to the site’s home page and

follow the easy steps to make NAF yourcharity of choice. Then use GoodSearch asyou would any other search engine.Thank you for making a difference in the

lives of those with ataxia!



By Michael Parent, NAF Executive DirectorAs we say goodbye to 2010 and welcome in

2011, we have a tradition to make a New Year’sResolution. If you are like me, we have the great-est intentions to make promises to ourselves forthe coming year … to lose weight, exercise, toset aside more time out of our busy schedulesto spend with family and friends, or to give morein time and financial commitments to ourcommunities and charities. Even with honorableaspirations, I for one, fall short in keepingmany ofmy New Year’s Resolutions.This year will be different. This year, after put-

ting it off for so many years, I will be making awill. It is something most Americans do not haveor even think about. In fact only 30% of us haveestablished a will, and of those who have wills,approximately 50% have revised their wills in thepast five years.Wills give us the opportunity to let others know

how we would like our funds to be used after weare gone. Many who have wills include in theirtestament a listing of various charities. In fact, be-quests to charities made up 8% of all giving in theUnited States in 2009 according to Giving USA.A bequest is one of the oldest methods of

supporting charities. Ben Franklin, a pioneer onso many fronts, made one of the first bequests inthe United States when he gave $4,000 to thepeople of Pennsylvania and the City of Philadel-phia in 1790. His provision, however, was not tospend those funds for 200 years. Those funds,over time, grew to $2.3 million dollars.Anyone canmake a bequest to charities; it is not

just for the wealthy. The National Ataxia Foun-dation, through the kindness of donors, has seenbequests ranging from a few thousand dollars tonearly onemillion dollars. In fact, over the past 13years the Foundation has receivedmore than $2.5million dollars from estates. Just in the past monthNAF received nearly $100,000 from two estatesto help support vital programs and services.Those funds, through bequests, have made

significant advances in world-wide ataxia researchinto Friedreich’s ataxia, SCAs, and Sporadicataxia, along with supporting additional impor-tant programs and services for ataxia families.It also helps in other, not so glamorous ways ...in defraying the costs for office space, utilities,printing and postage, and other day-to-day oper-ational expenses.Individuals who have included NAF in their

wills have made a profound impact on NAF’sability to continue our efforts in supportingpromising research and important programs.They are true champions in the fight againstataxia who, through their kindness, have enabledNAF to continue its most important mission inhelping those affected by ataxia.Sometimes NAF is notified when an individual

has named NAF as a beneficiary in their will.Most often, however, we are informed after theyare gone. These individuals are really the unsungheroes of NAF who self lessly made a commit-ment to a cause that they truly believe in. We arethankful for their kindness and are grateful fortheir legacy in helping so many others.Support through deferred giving, such as wills,

continues to play a vital role in NAF’s ability tosupport vital research and meaningful programs.Without support through bequests, NAF wouldhave been unable to fund a number of importantresearch studies through the $200,000 Fried-reich’s Ataxia Special Projects Award or on-goingresearch efforts in the SCAs. We would not bewhere we are today in ataxia research without thekindness of donors who included NAF in theirwills.As we begin our wish list for our 2011 New

Year’s Resolutions, please consider the NationalAtaxia Foundation as a named beneficiary in yourwill. Your legacy will have an everlasting impact ingiving help and hope to ataxia families. Pleaseconsult your financial planner or attorney for legaldocuments such as wills. Thank you.

From theDeskof theExecutive Director

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NAF Merc

— ATAXIA RESOURCES —Evaluation and Management ofAtaxic Disorders for Physiciansby Susan Perlman, M.D.This resource is intended to inform and guide physi-cians who may be caring for patients with ataxicsymptoms or who have been diagnosed with ataxia.It will provide health care practitioners with a vocab-ulary to aid in the understanding of what is and isnot ataxia, diagnostic protocols for use in definingthe types and causes of ataxia and resources foruse in counseling and managing the ataxic patient.Consider buying one for your neurologist and otherhealth care providers. Published in 2007. $5

Healing Wounded Doctor-Patient Relationshipsby Linda Hanner with contributions by John J.Witek,M.D. and doctors and patients around the nationThis book is packed with information that anyonewho ever goes to a doctor for any reason deservesto know and that every professional who wants tomaximize his or her healing power must understand.$10

Living with Ataxia: AnInformation and Resource Guideby Martha Nance, M.D.This illustrated book provides acompassionate, easy to under-stand explanation of ataxia withideas on how to live well withataxia. It is an excellent tool forbuilding awareness for those whodo not know what ataxia is or how it affects a personwho has ataxia. This second edition was publishedin 2003. $14

Managing Speech and Swallowing Problems:A Guidebook for People with Ataxiaby G.N. Rangamani, Ph.D. withcontributions from Douglas E. Fox, M.S.This 60-page booklet is an excellent resource forthose who struggle with speech and/or swallowingproblems. It is an easy to understand booklet withstraight-forward and realistic suggestions for speechand swallowing management. This second editionwas updated in 2006. $7.50

BOOKS

— FICTION & PERSONAL STORIES —Summer Born: A Life with Cerebellar AtaxiaBy Cheryl WedesweilerAlthough the characters are fictional, the story isbased on the author’s real life experiences withhaving cerebellar ataxia. $15.95

Ten Years to Liveby Henry J. SchutThe story of the Schut’s family struggle with heredi-tary ataxia and the impact it had on this extendedfamily. It is dedicated to the author’s brother, Dr. JohnW. Schut, who was committed to the cause of findinga cure for ataxia, which claimed his life. $8.75

There’s Nothing Wrong with Askingfor a Little Help … and Other Mythsby Dave LewisThe story about one man’s experiences in living withFriedreich’s ataxia. Dave spent the last three years ofhis life writing his memoir to provide information andinspiration to countless others. Proceeds from thebook purchased through NAF will be used to supportpromising Friedreich’s ataxia research. $15.95

Three Wheelsby Rebecca Cummings BaldwinThis is the true personal and heart-warming storyof a woman with ataxia. A portion of the proceedssupports the National Ataxia Foundation. $15.99

— COOKBOOKS —Recipes and Recollectionsby Kathryn Hoefer SmithDedicated to the memory of her daughters who hadFriedreich’s ataxia, Kathryn Hoefer Smith has takenthe handwritten cookbook her mother-in-law made forher sons and their families and duplicated it in 2003.It is full of delicious recipes and recollections. Perfectfor FRDA research fundraisers. $10

Cooking for a Causeby Julie Karjalahti for FRDA researchThis 177-page cookbook has kid’s recipes, fun craftrecipes, along with the usual desserts, breads, bev-erages and other recipes you would expect from agood cookbook. $12


chandise

To order, call (763) 553-0020,fax (763) 553-0167 or mail this form to

National Ataxia Foundation, 2600 Fernbrook Lane,Suite 119, Minneapolis, MN 55447

Description Qty. Size Each Total

________________________________________________

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SUBTOTAL: ___________________________________

Shipping within U.S.: Add $5.00

Shipping outside U.S.: Add $15.00

ORDER TOTAL: _______________________________

PLEASE ALLOW 4-6 WEEKS FOR DELIVERY

NAME: __________________________________________

ADDRESS: _______________________________________

CITY_________________ STATE: ____ ZIP: ___________

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For credit card orders, please fill out the following information(you must include phone number and signature):

PLEASE CIRCLE ONE: Visa Mastercard Discover

NAME ON CARD: _________________________________

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VIDEO/CD

Ballads of a Family Man CD10 songs in memory of Billa Ballard. $5 of purchaseprice goes to support the work of the NAF. $13

“Together There is Understanding” VHS or DVDA discussion of ataxia. 50 minutes. VHS $20 or DVD$25

Window Cling or Bumper Sticker$1 ea. or 6 for $5

NAF Ataxia Awareness Band BlueOne size. $2

NAF Ataxia Awareness Ribbon MagnetBlue with white lettering/logo. $4

Reusable Grocery Bag with NAF Logo$5

International Ataxia Awareness Day T-ShirtAvailable in youth L, and adult small to XXX-large. $10

2010 Annual Membership Meeting T-ShirtGray, long-sleeved with the “Winds of Progress” logo.Sizes medium to XX-large. $10

NAF Shoulder BagBlue with white NAF logo. 11x15x2 inches. $10

NAF Polo ShirtsMens – Royal blue w/white embroidered NAF logo.Sizes medium to XXX-large. Womens – Light blue w/navy embroidered NAF logo. Sizes small to XX-large.$25

NAF Denim ShirtDenim with white embroidered NAF logo. $27.50

“Ataxia is Not a Foreign Cab” T-ShirtWhite. New design.Sizes small to XXX-large. $10

“Ataxia is Not aForeign Cab”SweatshirtWhite. Sizes small toXXX-large. $20

SHIRTS/MISCELLANEOUS

ORDER FORM



TheNational Ataxia Foundation (NAF) Boardof Directors and theNational Ataxia FoundationLos Angeles, Orange County, and San DiegoAtaxia Support Groups would like to welcomeyou to the 54th Annual Membership Meeting.Please join us at the Hilton Los Angeles AirportHotel to learn, share, network, have fun, andenjoy the sites.The 2011 NAF Annual Membership Meeting

will bring together NAF members and theirfamilies to meet and learn from world leadingataxia scientists and clinicians, but also to buildnew friendships and reunite with old friends.Whether this is your first meeting or your 54th,the 2011 Annual Membership Meeting will befilled with education, celebration, sharing, andcaring!The Annual Membership Meeting Registra-

tion Form can be found on pages 26-28 of thisissue of Generations and on NAF’s website inJanuary 2011. You may also view the latestinformation about the Annual MembershipMeeting on NAF’s website, www.ataxia.org.The Annual Membership Meeting Program

you receive at the conference will be the mostupdated conference schedule. Please use yourMeeting Program for meeting room assignmentsand times. Due to unforeseen circumstances themeeting schedule may change. We apologize inadvance if that occurs. Any changes will beposted in the Registration room and announcedat the meeting. For that reason we encourageattendees to plan to attend the entire meeting toensure that you will not miss a presentation.

Program OverviewThursday, March 17

Leadership Meeting – 1-3:30 p.m. This meet-ing is designed to provide information andsupport to NAF’s Chapter Presidents, SupportGroup Leaders and Ambassadors. The meetingis a valuable resource for volunteers who serve inthese appreciated positions. If you are a leaderwho is unable to attend the meeting, please indi-cate one representative who will attend in yourplace. Meeting attendees will have questions andconcerns addressed, learn from peers and profes-sionals and have the opportunity to meet othersand exchange tips and ideas. If you are interestedin becoming a group leader or ambassador, con-tact Lori at [email protected] prior to the meeting.

Fundraising Meeting – 4-5:30 p.m. This meet-ing is for anyone who is interested in learningmore about doing a fundraiser to support the im-portant work of theNational Ataxia Foundation.Please contact Lori Shogren at [email protected] you are interested in attending.

(NEW) St. Patty’s Day Welcome Reception –7 p.m. Please join us for a “jolly good green”reception in the Ballroom. All registeredmeeting attendees are welcome to attend anddeck out in green. Admittance to this eventand food that is provided at this event isincluded with your registration. Snacks willbe served. Not ameal. A cash bar will be avail-able. Don’t forget to wear your favorite shadeof green. (Note: This event replaces the Fridaynight reception.)

TheNational Ataxia Foundation54thAnnualMembershipMeeting

Los Angeles,CA –March17-20, 2011

By Lori Shogren, National Ataxia Foundation Special Projects Coordinator

“Bringing the Ataxia World Together”

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Friday, March 18General Sessions – 8:30 a.m. - noon. General

Sessions will start Friday morning in the Inter-national Ballroom. Many of the world’s leadingataxia researchers and clinicians, along with otherataxia experts, will be presenting the latestresearch. The General Sessions will incorporatepractical aspects in addition to the research andmedical topics. A 30-minute Question andAnswer session will follow the morning GeneralSessions with a panel of the morning speakers.

Nintendo Wii Demonstration – An opportunityto observe and play the Nintendo Wii gamesystem will be available Friday and Saturdayfrom 10 a.m. to 2 p.m. You can try out theNintendo Wii game system for yourself and askquestions about the Nintendo Wii system.Those with limited movement abilities whowant to stay active are using the Nintendo Wiisystem in many nursing homes and individualhomes around the world. The demonstrationis open to all ages. Persons under the age of 12must be accompanied by a parent or guardianwho is age18 or older. Please limit your timeon the system so that everyone interested inthis product is provided the opportunity to try it.

Birds of a Feather – 2 -5 p.m. Attendees willattend small group sessions. Groups will bedivided by different types of ataxia or differentroles that attendees are experiencing, i.e. care-giver, spouse, or parent. This is a tremendousopportunity to meet others who share a similarsituation or the same ataxia diagnosis. Previousattendees have said these group sessions were themost valuable segment of the annual member-ship meeting. Medical professionals will becirculating between groups and available forquestions. Please indicate on your registration formwhich BOF session you will attend so we can final-ize the meeting room assignments.

Internet Group – 7 p.m. This is your opportu-nity to meet some of those internet friends whoyou have met on the NAF chat room, NAFBulletin Board, Internaf, Tricks of the Trade,

Ataxia Forum, Ataxia Chat 2002, FAPG,u_r_notalone, NAF’s Facebook Group, andMySpace NAF.

Saturday, March 19General Sessions – General Sessions continue

all day in the Ballroom. A 30-minute Questionand Answer session will follow the morning andafternoon General Sessions with a panel of thespeakers who presented during those sessions.

Church Services – 6 p.m. Catholic and non-denominational church services will be held onSaturday for those who wish to attend.

Silent Auction – The Silent Auction is a funway to help raise funds for NAF and for you tobid on wonderful items. This long-standingNAF tradition begins on Saturday afternoonwith the final bidding ending at 7:30 p.m. Auc-tion items range from something that representsyour state or country to artwork, sports memo-rabilia, theme baskets, hand-crafted items, hotelstays and weekend getaways. Bring an item todonate and then have fun bidding on the items ofyour choice. Good luck!

Saturday Evening Banquet – 7 p.m. The ban-quet will be held in the Ballroom. Please get yourtickets – which are included in your registrationfee – ahead of time. All beverages will be availableat a cash bar. You must reserve seating and selectan entrée choice for the banquet in advance. Thebanquet will include a plated dinner with yourchoice of chicken stir-fry (which is also gluten-free), vegetarian or vegan entrée that you selecton your conference registration form. Pleaseverify your entrée selection when you obtainyour banquet tickets and select your seating.Banquet tickets are available by the NAF regis-tration room. If you pick up tickets for a group ofpeople please know the entrée selections foreveryone in your party.

Sunday, March 20General Sessions – Sunday morning wraps up

the 2011 Annual MembershipMeeting with the

Continued on page 20



final round of General Sessions in the GrandBallroom followed by a Question and AnswerSession with a panel of the speakers whopresented during this time. Don’t miss theseimportant sessions!

Additional InformationConference Registration – Please complete and

return to NAF by February 15, 2011 the regis-tration forms that will be available on NAF’swebsite in January 2011 and are in this issue ofGenerations. Please fill out the registration formcompletely, as we need all the information tofinalize plans. There will be an additional chargefor registrations after February 15, 2011. Reg-istration after March 1, 2011 will only beaccepted on-site at the conference. If you arebringing an attendant, please register together onthe same registration form. Each person that isplanning on attending daily sessions, the recep-tion, or banquet needs to register. Event entrywill not be allowed without properly registeredname tags.

Registration Fees – Being a member of theNational Ataxia Foundation has its benefits –one being a lower registration fee for the AnnualMembershipMeetings. If you are not currently amember of the Foundation or if your member-ship renewal is coming soon or if you are uncer-tain of your membership status, please considerthis a great opportunity to call the office at (763)553-0020 or go online at www.ataxia.org tobecome a member or renew your membership.This will prevent unnecessary extra fees or errorsin your membership status when you register forthe 2011 Annual Membership Meeting. Thankyou for taking time to renew or become a mem-ber of the National Ataxia Foundation. Yourattention to this detail is greatly appreciated.

Video Taping – Video taping of the NAFAnnual Membership Meeting General Sessionsis prohibited without prior written consent from

the National Ataxia Foundation.Image Waiver – By attending the 2011 NAF

Annual Membership Meeting you give yourconsent, unless you notify us otherwise inwriting, to use your image captured during theconference through video, photographs, ordigital imagery, to be used by theNational AtaxiaFoundation in promotional materials, publica-tions, and web site, and you waive any and allrights to these images.

Fragrance Free – There are many people whoexperience unpleasant to severe effects fromscented products, such as perfumes and colognes.For the comfort of our attendees we ask that allparticipants refrain from wearing perfume,cologne and other fragrances, and use unscentedpersonal care products in order to promote afragrance-free environment.

About Los AngelesLos Angeles, Spanish for “The Angels,” is the

second most populous city in the United States,the most populous city in the state of Californiaand the westernUnited States, with a populationof 3.83million within its administrative limits ona land area of 498.3 square miles. The urban areaof Los Angeles extends beyond the administra-tive city limits with a population of over 14.8million, it is the 14th largest urban area in theworld, affording it megacity status. The LosAngeles-Long Beach-Santa Anametropolitan�

Los Angeles, “The City of Angels,” will playhost to the 2011 Annual Membership Meeting.

Annual Membership MeetingContinued from page 19



statistical area (MSA) is home to nearly 12.9 mil-lion residents while the broader Los Angeles-Long Beach-Riverside combined statistical area(CSA) contains nearly 17.8 million people. LosAngeles is also the seat of Los Angeles County,the most populated and one of the most multi-cultural counties in the United States.Often known by its initials, L.A., and nick-

named the City of Angels, Los Angeles is a worldcenter of business, international trade, entertain-ment, culture, media, fashion, science, technol-ogy, and education. It is home to renownedinstitutions covering a broad range of profes-sional and cultural fields, and is one of the mostsubstantial economic engines within the UnitedStates. In 2008, Los Angeles was named theworld’s eighth most economically powerful cityby Forbes.com, third in the U.S. behind NewYork City and Chicago. The Los Angeles com-bined statistical area (CSA) has a gross metropol-itan product (GMP) of $831 billion (as of 2008),making it the third largest economic center inthe world, after the Greater Tokyo Area and theNew York metropolitan area. As the home baseof Hollywood, it is known as the “EntertainmentCapital of the World,” leading the world in thecreation of motion pictures, television produc-tion, video games, and recorded music. Theimportance of the entertainment business to thecity has led many celebrities to call Los Angelesand its surrounding suburbs home. http://en.wikipedia.org/wiki/Los_AngelesThere are a great number of things to do, see,

and eat in Los Angeles. For a comprehensiveguide to activities, events, dining, and recreationplease visit www.discoverlosangeles.com or www.latourist.com/index.php?page=access-guide.L.A.-area tour companies offer a variety of

tours. Here are two tour companies that providea wide selection of tours around the L.A. area:VIP Tours (www.viptoursandcharters.com) andStar Line Tours (www.starlinetours.com). Tours toattractions often include the attraction tickets.TheOcean Express Trolley stops at the Hilton

LAX. The Ocean Express provides transporta-tion to the Manhattan Beach area and LAXarea hotels. Roundtrip passes are $5. Tickets canbe purchased at the hotel valet stand andconcierge desk. (Note: Due to weight restrictions,Ocean Express Trolley only accepts manual wheel-chairs on their lifts.) www.gatewaytola.org/index.cfm/programs/ocean-express/

Universal Studios PackageUniversal Studios & VIP Tours is delighted to

announce a special rate to Universal Studios forthe guests of the National Ataxia Foundationwho wish to visit us at Universal Studios Holly-wood during NAF conference dates!VIP Tours will pick up your party at the Hilton

LAX, bring you to Universal Studios Holly-wood, and bring you back to the Hilton LAX.VIP Tours can accommodate wheelchairs as well.The package price for NAF guests, includingroundtrip transportation, will be the following:• $81 for a full day ticket• $71 for a half day ticketVIP tours will operate the shuttle at the

following times each day: Leaving the Hilton at9:00 a.m., 10:40 a.m., and 11:40 a.m.; leavingUniversal Studios Hollywood at 3:30 p.m. and6:30 p.m.Guests of the National Ataxia Foundation will

be sharing the shuttle with guests who are notutilizing this special offer, so to board the shuttle,NAF guests will need to show their ticket inorder to do so. They will not be able to schedulea time in advance, so please board at whatevertime is convenient from the times listed above.It is important to have your tickets with youwhen boarding, as this will be the only way to geton the shuttle and into the park. To book thispackage please visit https://ushtix.com/Home.aspx

About the HotelThe Hilton Los Angeles Airport is the official

conference hotel of the 2011 NAF AnnualMembership Meeting. The Hilton LAX is




located one-fourth of a mile from the Los Ange-les International Airport (LAX) and 12 milesfrom L.A.’s City Center at 5711 West CenturyBoulevard, Los Angeles, CA 90045.Each room features an abundance of amenities

to ensure a quality experience. Relax in TheHilton Serenity Bed™ which includes theHilton Suite Dreams®Mattress and Box Spring,Box Pleat Dust Ruff le, Hilton Serenity Linen,Down Duvet and Touch of Down™ Pillows.Coupled with our double paned windows, guestsexperience the ultimate in comfort and quiet for

a restful night. Additional features include: Largework desk and chair with convenient desk-leveloutlets, High-speed internet access for $12.95/24hours, Large screen “flat” televisions, Voicemail,Serenity Bath Collection by Crabtree & Eve-lyn®, Hilton clock with easy to set alarm andadaptor for MP3 playback, Coffeemaker, Ironand ironing board, Hairdryer, Lodgenet offersover 50 current movies and Nintendo in guestrooms, Zip-In Check-In and Zip-Out Check-Out, and in-room video account review. Pleasevisit the Hilton LAX website for more informa-tion: www1.hilton.com/en_US/hi/ hotel/ LAXAHHH-Hilton-Los-Angeles-Airport-California/

index.do.Self parking and valet parking are available. The

Hilton LAX has extended a discounted parkingrate of $8 per day for our conference attendeesfor self parking and overnight attendees. TheNAF group rate for valet parking is $18 per day.To receive the group parking rate you will needto get a discounted parking ticket in the registra-tion room. You will be able to exchange theticket you receive when entering the parking lotfor one that will allow you a one-time discountedin and out ticket. If you are not staying at thehotel you will need to get a discounted ticketeach time you enter the lot. Unlimited dis-counted in and out access is available forovernight guests only. There is a height restric-tion of 6' 2" into the parking ramp. Parking spotsin the open lot behind the hotel will be madeavailable at the valet rate of $18 per day for vehi-cles that do not meet the height restriction.Guest room reservations are available for a

special group rate of $100 per night. Please besure to make your reservations byMarch 1, 2011in order to secure the special group rate. To bookyour stay online go to www.hilton.com/en/hi/g r oup s / p e r s ona l i z e d /L AXAHHH-NAF-20110312/index.jhtml?WT.mc_id=POG.If you would prefer to make your reservations

by phone, please call 1-800-445-8667 or (810)410-4000 and ask for the National AtaxiaFoundation Conference special rate.There were a limited number of ADArooms available on a first-come, first-servebasis in our group block. To inquire aboutthe availability of an ADA room at theHilton Los Angeles Airport Hotel youMUST contact the National Ataxia Foun-dation at (763) 553-0020 or [email protected] you need ADA equipment be sure andmen-

tion this when making your room reservation.Shower chairs, tub bars, toilet frames, anddetachable shower heads will be available ona first-come, first-serve basis by contacting theHilton Los Angeles Airport Hotel front desk�


The lobby of the Hilton Los Angeles Airport,the official hotel of the 2011 AMM.



upon check-in. Please be aware that thebathroom doors in standard rooms are 25".The door can be removed upon request tomake thewidth 27". This widthwill be verytight for most wheelchairs.The Hilton LAX is within walking distance

to other hotels. If you are unable to get anADA room at the Hilton LAX you may wishto contact a reservations manager at the otherhotels that are nearby. Hotels within walkingdistance include Embassy Suites, Four PointsSheraton, Crowne Plaza, Sheraton Gateway andWestin LAX.

Transportation and Getting ThereNAF is not responsible for transportationto and from the hotel. The following may beused as a helpful guide for your convenience.

Travel Tips from the Los Angeles Department ofAviation:• Please indicate directly to your airline at the

time you make your reservation if you may needassistance, you are traveling in a wheelchair,scooter, or with a service dog.• Arrive two hours prior to departure if addi-

tional assistance is needed.• Visit the TSA website at www.tsa.gov before

you go for the latest travel information.• Please ask for a TSA Supervisor if you have

any concerns.ADA Friendly Services at LAX Airport –

www.lawa.org/welcome_LAWA.aspx?id=1766ADA Friendly Services at Bob Hope Airport –

www.burbankairport.com/passengers/disabled-passengers.html

Complimentary Shuttle – Take advantage of the24-hour, complimentary shuttle service to/fromthe LAX International Airport provided byDestination Shuttle, which runs every 15 min-utes. The designated waiting area for shuttlepick-up is on the lower level island of all termi-nals. Shuttle buses are Light Blue that readsHilton LAX and Four Points Sheraton. Call(310) 338-9496 for a lift-equipped shuttle.

Fly Away Shuttle – If you are traveling from

Union Station or UCLA you can take thisshuttle to LAX where you can pick up thecomplimentary hotel shuttle. Cost is $5 -$7 perperson. www.lawa.org/welcome_LAX.aspx?id=292

Taxis – From LAX Airport: Service is availableon the lower level island of all terminals underthe yellow sign indicating “Taxis.” All taxis aremetered. Passengers will be presented with aticket stating typical fares to major destinations.Only authorized taxis with an official seal issuedby City of Los Angeles Department of Trans-portation on each vehicle are permitted in theairport. It is illegal for any transportation servicesto solicit fares, and travelers using such servicesdo so at their own risk. Average cost is $5.

Authorized Taxicab Supervision (ATS)9468 Alverstone Ave. – (323) 776-5324Beverly Hills Cab Company6102 Venice Blvd. – (310) 273-6611Independent Taxi700 N. Virgil Ave. – (323) 666-0050Yellow Cab2129 W. Rosecrans – (310) 851-5022Checker Cab11003 S. Hawthorne Blvd. – (213) 482-3456Bell Cab Company13030 Cerise Ave. – (310) 219-3100City Cab7955 San Fernando Rd. – (818) 780-1000United Cab900 N. Alvarado St. – (323) 653-5050From Bob Hope Airport: Shuttle van service and

taxi cabs are located on the pedestrian islandsimmediately in front of the Bob Hope Airportpassenger terminal. City Cab (818) 848-1000;United Taxi 1-800-892-8294; Yellow Cab &Checker Cab 1-800-750-4400.

To/From Hotel & Downtown Los Angeles: Areavailable to reserve at the hotel concierge desk orvalet station. A one way trip is 30-40 minutes atan estimated cost of $30-50 one way.



Public Buses and Trains – The Los AngelesCountyMetropolitan Transit Authority operatesbuses equipped with automatic wheelchair lifts.For information, call (213) 626-4455 or 1-800-COMMUTEor 1-800-252-9040 (TDD/TTY).Metrolink: 1-800-371-LINK or 1-800-698-4TDD (TDD/TTY).Metro is also the primary funding source for

Access Services Incorporated, the federally-required ADA paratransit service. This service isoffered to individuals whose disabilities preventthem from independently using regular bus orrail service. It is comparable to fixed-routeservice and offers 24-hours-a-day curb-to-curbservice. 1-800-827-0829 or www.asila.org.

Access Paratransit Service – Consolidated Trans-portation Services Agency (CTSA) for LosAngeles County. Access Services is responsiblefor the administration of Access Paratransit andis committed to improving the mobility onpublic transit of persons with disabilities. AccessParatransit transportation service is available forany ADA paratransit eligible individual to anylocation within three-fourths of a mile of anyfixed bus operated by the Los Angeles Countypublic fixed route bus operators and withinthree-fourths of a mile around METRO Railstations during the hours that the systems areoperational. Access Paratransit operates sevendays a week, 24 hours of the day in most areas ofLos Angeles County. It is a shared ride servicethat operates curb-to-curb and utilizes a f leet ofsmall buses, mini-vans and taxis. Fares aredistance-based and range from $1.50 to $4 foreach one-way trip. Trip reservations can bemadefrom 45minutes to 24 hours prior to the desiredpick-up time. Phone: 1- 800-883-1295. TDD:1-800- 826-7280.

Car Rentals – Approximately 40 rental carcompanies operate out of LAX, with vehiclerental sites located off the airport. Many of theserental car companies provide phone links inside

or near the baggage claim areas on the Lower/Arrival Level of the terminals so travelers canrequest a free shuttle pick up to reach rental carsites. www.lawa.org/welcome_lax.aspx?id=1294.

Los Angeles Area Services & ResourcesThe following may be used as a helpful guide

for your convenience.

Accessible Van Services

Wheelers Van Rentals – LAX Airport1-800-456-1371 or www.wheelersvanrentals.

com/LosAngelesMobility WorksSales: 1-877-275-4907; Service: 1-877-275-

4912; Rentals: 1-877-275-4915; www.mobilityworks.com/LosAngeles.php

Wheelchair Getaways1-800-636-1912 or (650) 589-5554; www.

wheelchairgetaways.com/california.htm

Wheelchair & Scooter Rentals & Repair

A Scooter 4 U Inc.1-877-697-7725 or www.ascooter4u.comScootaround1-888-441-7575 or www.scootaround.comThe Mobility Center1-800-708-6399 or www.yesmobility.com/river

side_california_wheelchair.htmlBradford Medical Supply1-877-580-5757or http://bradfordmedicalsupply.

com/index.aspx

Personal Care Attendants

NAF is unable to provide attendant care serv-ices. Due to liabilities and health concerns, NAFand hotel employees are not able to provide thisservice. Please do not attend without makingarrangements for an attendant if you need one.

AccentCare, Inc.1-800-834-3059 orwww.accentcare.com/default.

aspxAccredited Nursing1-800-974-1234



�



Frequently AskedQuestionsAbout theNational Ataxia Foundation’sAnnualMembershipMeetingAre you going to the National Ataxia Foundation’s Annual Membership Meeting for the first-time?Below you will find answers to some common questions about the event to help you plan your attendance.

Q.) What is the Annual Membership Meet-ing? What happens at this event?A.) TheNAFAnnualMembershipMeeting orAMM is a large event hosted each year by theNational Ataxia Foundation. The event includesmedical and research presentations, social events,and opportunities to learn about the programssponsored by the National Ataxia Foundation.Annual Membership Meeting attendees willhave the opportunity to:

Learn• Listen to presentations by ataxia researchersand physicians about the latest in ataxia researchand therapy• Find out how to get involved in research –including clinical trials, natural history studies,patient registries and more• Learn about practical issues for managingataxia including medication and financial plan-ning• BrowseNAF’s educational materials – ataxiafact sheets, books, and other publications

Interact• Meet other individuals who share your ataxiadiagnosis, or who share the same role in the lifeof an individual with ataxia (such as parent,spouse, or caregiver) at our popular Birds of aFeather small group session• Interact with other attendees at a WelcomeReception and Banquet• Meet face-to-face with the individuals whovisit the NAF chatroom, bulletin board, andFacebook at our Internet Group session

Connect with NAF• Learn about the activities of the NationalAtaxia Foundation – including research funding,support group formation and fundraising• Hear a report from theNAF office about theorganization’s business activities and participatein board elections• Find out how NAF can help you connectwith others in the ataxia community

Q.) What do I need to do to attend?A.) Fill out the registration form on pages 30-32 and return it to the National Ataxia Founda-tion’s office. Youmay also find and complete thisform online at our website, www.ataxia.org.

Q.) What kind of travel arrangements am Iresponsible for? Will NAF make arrangementsfor my travel?A.) No. Meeting attendees are responsible forbooking their own travel and transportation toand from the meeting site. NAF does, however,have a room block at the hosting hotel, whichmeans that meeting attendees will receive adiscounted room rate for staying at the hotel aspart of the NAF meeting.Attendees do, however, need to mention thatthey are part of theNAF conference when book-ing their rooms in order to be eligible for thatroom rate.If attendees are in need of an ADA room theymust contact Lori Shogren of the NAF staff tobook their room. She can be reached at (763)553-0020 or by email at [email protected].


Gen_1004_25-32.qxp:Layout 1 12/14/10 6:09 PM Page 25


Q.) What is an ADA room?A.) An ADA room is a hotel room that com-plies with the requirements of the Americanswith Disabilities Act. Features may include largerdoorways and a roll-in shower to accommodatemobility devices such as wheelchairs.

Q.) Do I have to pay a fee to attend?A.) Yes. Attendees have to pay a registration feein order to attend themeeting. Registered atten-dees will be able to attend the Welcome Recep-tion which includes light appetizers, the Saturdayevening banquet, which includes a full plateddinner, and all the presentations and small groupevents.

Q.) Do I have to be a paid member of theNational Ataxia Foundation to attend?A.) No, you do not. However, if you are amember you will be able to register for theconference at a reduced rate.Members can checktheir membership status on the back cover of thisissue of Generations.

Q.) If I am currently not a member of NAF,can I become one when I register? And receivethe discounted member rate for registration?A.) Yes, you can become amember at the sametime you register, and you may sign up using themember rate.

Q.) If I bring my caregiver, friend, or spouse,

do they have to register for the meeting?A.) Yes, all attendees need to register for themeeting. If you are a member of NAF, both youand your additional attendee may register for themeeting using the discounted member rate.Members are only allowed to apply this rate toone individual. Any additional individualswill need to either become members to receivethe member registration rate, or pay the non-member registration fee.

Q.) I would like to go to the meeting, but donot know if I will be able to afford the costs oftravel. Does NAF offer any assistance?A.) Yes. NAF operates a Travel Grant programin which individuals can apply to receive amonetary grant to help cover the costs of travel toattend the meeting. NAF may not be able tofund all submitted applications, but if you areinterested in this program, you may visit ourwebsite, www.ataxia.org, and complete and sub-mit the application. If you would like a hard copyof the form, please contact Lori Shogren of theNAF staff at [email protected] or (763) 553-0020.The deadline for applications to be returned toNAF is January 26, 2011. Travel grant applica-tions are available for both adults and children.

Q.) If I am unable to attend the meeting, willI have the opportunity to learn about what waspresented?A.) Yes. NAF will provide materials on ourwebsite and in Generations after the meeting.The newsletter will contain select transcripts,articles, and photos. The website will includepresentation slides, handouts, and photos fromsome of the weekend’s activities.

Q.) I am a medical professional. Can I receiveContinuing Medical Education (CME) creditsfor attending this meeting?A.) No. This meeting does not meet CMErequirements.

If you have additional questions about the AnnualMembership Meeting, please contact the NAF officeat (763) 553-0020.

Frequently Asked Questions...Continued from page 25

Looking for that perfect gift or items foryour everyday needs? You can shop onlineat a variety of partnering stores for all yourhome, office, health & beauty, and clothingneeds through MarketAmerica’s NAF shop-ping website, www.ShopNAF.org.Each purchase you make through this

website will help support the NationalAtaxia Foundation. Thank you.

ShopNAF.org

�



Dates: March 17-20, 2011 Location: Hilton Los Angeles Airport5711 West Century BoulevardLos Angeles, CA 90045(810) 410-4000 or 1-800-445-8667

Advance Registration Fee for NAF members or Spouse/Caregiver:A low registration fee of $75 per person gains you complete access to General Sessions, aswell as participation in exhibits, breaks, the Thursday Night Reception, and the Saturday EveningBanquet. Sign up early to get this low advance rate!Advance Registration Family Rate:The family rate applies to family members living at the same address.$75 per person with a maximum fee of $300.Non-Member Advance Rates:If you are not a current paid member of NAF, the advance registration rate is $130 per personwith a $520 maximum for families.

Late Registration or Registration at the Door (NOT RECOMMENDED):The fee for registrations postmarked after February 15, 2011 is $100 per person for NAFMembers and $155 per person for non-members.

PLEASE NOTE: The Registration FeesDO NOT include hotel or transportation fees!

Instructions for Registration:1. Complete the enclosed registration form and mail, with your payment, to the NAF office.Please fill out the form completely. The requested information is necessary to completepreparations for the meeting.

2. Registration Fees. If you plan to attend either just the conference or just the banquet, the fullper person fee will still be charged. If you are bringing your children to the meeting, thefollowing fees will be charged: children two years and under are free; children three years andover will be charged the full meeting fee.

3. Childcare services will not be provided by NAF or its local volunteers.4. Complete and return both pages of the Registration form by February 15, 2011. Please fill outthe name portion of the registration exactly as you would like it to appear on your name badge.

The Board of Directors of the National Ataxia Foundation along withthe Los Angeles, Orange County and San Diego Ataxia Support Groups

Cordially Invite You to the 2011Annual MembershipMeeting

Registration Deadline is February15, 2011Please complete all three pages of the registration form and return to the following address:

National Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447-4752(763) 553-0020 Fax: (763) 553-0167 E-mail: [email protected]

For your convenience, a return envelope has been provided in this issue

“Bringing theAtaxiaWorld Together”



Birds of a FeatherBirds of a Feather Informal Groups will meet from 2:00 - 5:00 p.m. in various meeting rooms. Please check the hall signsfor your specific group’s location. Tentative room assignments are listed below.Session Location NotesAtaxiasSCA1 .................................................... Plaza Ballroom ASCA2 .................................................... Marina RoomSCA3 .................................................... Los Angeles Ballroom A & BSCA6 .................................................... Carmel RoomAll other SCAs ...................................... Plaza Ballroom B, C & D ....... Any SCA other than 1, 2, 3, or 6Sporadic/MSA ...................................... Century C & D RoomFriedreich’s Ataxia ................................ International Ballroom B ........ Panel of speakers for first hour of this sessionUnknown/Episodic/AOA 1 & 2 .............. International Ballroom A ........ Attend if you do not know your type of ataxia

Parents ..................................................... La Jolla BallroomCaregivers ............................................... Newport B Room ................... See below*Spouses ................................................... Los Angeles Ballroom C ........ See below*Siblings (Adults) ..................................... Newport C Room ................... See below**Due to the privacy of the issues talked about in these sessions, we encourage those with ataxia to attend the BOF sessions for ataxians.

Time Speaker Topic8:30 a.m. ............ Arnie Gruetzmacher, AMM Chair .......................... Welcome & Opening Remarks9:00 a.m. ............ Susan Perlman, MD ............................................. LA Experience & Ataxia Medical Update9:45 a.m. ............ Melinda Guttry, PT & Jacquelyn Glenn, OTR ....... OT/PT for Ataxia10:40 a.m. .......... Anne Lefton, CCC-SLP ......................................... Speech & Swallowing11:20 a.m. ........... Al LaSpada, MD, PhD, FACMG ............................ Poly Q SCAs/SCA711:45 a.m. ........... Q&A Panel12:15 p.m. .......... LUNCH

Friday General Sessions

View the latest information available about the Annual Membership Meeting on our Web site, www.ataxia.org.

2011NAF Annual Membership MeetingAgendaPlease Note: Due to circumstances beyond our control, this meeting agenda is subject to change.

THURSDAY, March 17Event Location TimeNAF Registration ...................................... Pacific Ballroom A ....................................................... 8:00 a.m. - 9:00 p.m.Exhibitors .................................................. International Ballroom Foyer ...................................... 10:00 a.m. - 9:00 p.m.Leadership Meeting .................................. Pacific Ballroom B ....................................................... 1:00 p.m. - 3:30 p.m.Fundraising Meeting ................................. Pacific Ballroom B ....................................................... 4:00 p.m. - 5:30 p.m.NEW St. Patty’s Day Reception ............... International Ballroom ................................................. 7:00 p.m.

FRIDAY, March 18Event Location TimeNAF Registration ...................................... Pacific Ballroom A ....................................................... 8:00 a.m. - 5:30 p.m.Exhibitors .................................................. International Ballroom Foyer ...................................... 8:00 a.m. - 5:30 p.m.General Sessions ..................................... International Ballroom ................................................. 8:30 a.m. - 12:15 p.m.Nintendo Wii Room .................................. Century A & B ............................................................. 10:00 a.m. - 2:00 p.m.Lunch ........................................................ On Your Own .............................................................. 12:15 p.m.Birds of a Feather ..................................... Various Meeting Rooms ............................................. 2:00 p.m. - 5:00 p.m.Internet Group .......................................... International Ballroom B ............................................. 6:00 p.m. - 8:00 p.m.



2011NAF Annual Membership MeetingAgendaPlease Note: Due to circumstances beyond our control, this meeting agenda is subject to change.

SATURDAY, March 19

Time Speaker Topic8:30 a.m. ............ Jamie Hoffman, CTRS ............................ Adaptive Recreation, What You CAN DO!8:55 a.m. ............ Richard Ivry, PhD .................................... How Cerebellar Dysfunction Affects Motor Control9:20 a.m. ............ Joel Gottesfeld, PhD ............................... HDAC Inhibitors in FRDA9:45 a.m. ............ Vikram Shakkottai, MD, PhD .................. Clinical Trials and Natural History Study10:10 a.m. .......... Theresa Zesiewicz, MD, FAAN ............... Analysis of Chantix Clinical Trial10:35 a.m. .......... Clive Svendsen, PhD .............................. Stem Cell Research for Ataxia11:00 a.m. .......... Henry Paulson, MD, PhD ........................ Research Update11:25 a.m. .......... Q&A PanelNoon ................... LUNCH2:00 p.m. ............ Christopher Gomez, MD, PhD ................ Medication for Ataxia Symptoms2:25 p.m. ............ S.H. Subramony, MD .............................. National Ataxia Registry2:50 p.m. ............ Ralph Miller .............................................. Wheelchair Yoga3:15 p.m. ............ Arnie Gruetzmacher, CFP ....................... Financial Planning4:00 p.m. ............ Q&A Panel

Saturday General Sessions

SUNDAY, March 20Event Location TimeNAF Registration ...................................... Pacific Ballroom A ....................................................... 8:00 a.m. - 11:00 a.m.Exhibitors .................................................. International Ballroom Foyer ...................................... 8:00 a.m. - NoonBusiness Meeting ..................................... International Ballroom ................................................. 8:30 a.m. - 8:55 a.m.General Sessions ..................................... International Ballroom ................................................. 9:00 a.m. - 12:30 p.m.

Time Speaker Topic9:00 a.m. ............ Sid Gilman, MD ....................................... Sporadic Ataxia and MSAResearch9:25 a.m. ............ Una Lee, MD ........................................... Management of Neurogenic Bladder9:50 a.m. ............ Joanna Jen, MD, PhD ............................. Management of Dizziness in Ataxia10:15 a.m. .......... Jon Rodis, MBA ....................................... Applying for Social Security Disability10:40 a.m. .......... Brent Fogel, MD, PhD ............................. Recessive & Paraneoplastic Ataxia11:05 a.m. .......... George Wilmot III, MD, PhD ................... What We Have Learned11:30 a.m. .......... Q&A PanelNoon ................... Arnie Gruetzmacher, AMM Chair ............ Closing Remarks

Sunday General Sessions

Event Location TimeNAF Registration ...................................... Pacific A Ballroom ....................................................... 8:00 a.m. - 5:00 p.m.Exhibitors .................................................. International Ballroom Foyer ...................................... 8:00 a.m. - 5:00 p.m.General Sessions ..................................... International Ballroom ................................................. 8:30 a.m. - NoonNintendo Wii Room .................................. Century A & B ............................................................. 10:00 a.m. - 2:00 p.m.Lunch ........................................................ On Your Own .............................................................. NoonGeneral Sessions ..................................... International Ballroom ................................................. 2:00 p.m. - 4:30 p.m.Silent Auction ............................................ Plaza Ballroom B ........................................................ 3:30 p.m. - 7:30 p.m.Catholic Service ........................................ La Jolla A B ................................................................. 6:00 p.m. - 6:45 p.m.Nondenominational Service ..................... Carmel ........................................................................ 6:00 p.m. - 6:45 p.m.NAF Banquet ............................................ International Ballroom ................................................. 7:00 p.m.

View the latest information available about the Annual Membership Meeting on our Web site, www.ataxia.org.



2011NAF AnnualMembership Meeting Registration1. *Full Name: ___________________________Name on Badge: _______________________*Address: _____________________________*City/State/Zip: ________________________Country: ________ *Phone: ______________E-mail: _______________________________Internet Chat Name: _____________________� Adult (18+) � Teen (13-17) �Child (0-12) � PCA

*Indicates required information. PCA = Personal Care Attendant. †Non-spouse caregiver.

*Please indicate the type of ataxia you have or thedistinct relationship you have with an individualaffected by ataxia. This designation will help usplan adequately for our Birds of a Feather sessions.� SCA1 � SCA3 � All other SCAs� SCA2 � SCA6 � Sporadic/MSA� Parent � Unknown/episodic/AOA� Spouse � Friedreich’s� Caregiver† � Sibling

Assist Dog Name:

2. *Full Name: ___________________________Name on Badge: _______________________*Address: _____________________________*City/State/Zip: ________________________Country: ________ *Phone: ______________E-mail: _______________________________Internet Chat Name: _____________________� Adult (18+) � Teen (13-17) �Child (0-12) � PCA


Assist Dog Name:



Assist Dog Name:



Assist Dog Name:



Assist Dog Name:



Please complete the following table for each person: #1 #2 #3 #4 #51. Is this your first NAF Annual Meeting? Y or N2. Are you attending the Saturday evening banquet?

(included with your registration fee) Y or N3. If you are attending the Banquet, you have the followingoptions: Main entreé (M), Vegetarian (V) or Vegan (VE)– all are gluten-free. Please indicate your preference. M, V or VE

4. Will you be using a Scooter (S), Manual Wheelchair (M),Electric Wheelchair (E), or a Walker (W)? Blank, S, M, E or W

5. Are you a current paid member of NAF? (If you areunsure of your membership status, contact NAF beforesubmitting your resigration form.) Y or N

By attending the 2011 NAF Annual Membership Meeting you give your consent, unless you notify us otherwise, to use yourimage captured during the conference through video, photographs, or digital imagery, to be used by the National Ataxia

Foundation in promotional materials, publications, and web site and waive any and all rights to these images.

2011NAF AnnualMembershipMeetingRegistrationNAF will send out all pre-registration materials and meeting handouts through e-mail. For those whodo not use e-mail, materials will be mailed and hard copy handouts will be provided at the meeting.

THINKING ABOUT GOING OUT TO DINNER FRIDAY NIGHT?The Hilton LAX is pleased to provide transportation to Rosecrans Blvd. for a fun and trendy dine-aroundexperience in El Segundo. Rosecrans Blvd. is only minutes from the hotel offering a wide variety and styleof dining options. Contact information for these restaurants is available at the Hilton Bell Desk.The shuttle to Rosecrans will run Friday, March 18 from 4:30 p.m. to 10:30 p.m. on a first-come/first-servebasis. If this non-NAF sponsored service is something you feel you will be participating in, please let thehotel know by checking “YES” in the following box. This information will be use to identify the level ofinterest in utilizing this service only and is not a reservation.� YES Approximately what time do you think you will be dining? __________

If you require accessible transportation with a lift to Rosecrans, please complete and return thefollowing information:Please indicate what time your party would like to depart the Hilton LAX __________Please indicate what time your party would like to return to the Hilton LAX __________Please indicate how many will be in your party __________Please indicate whose name this reservation should be made under ______________________________Please provide a phone number where this person can be reached __________How many in your party will need to use transportation with a lift? __________

TRAVEL INFORMATIONFlying? � Yes � No If no, how will you be traveling (i.e., driving, bus)? __________________________For parking arrangements at the hotel we need to know if you will be driving a van with a lift: � Yes � NoAir Carrier: _______________________________ Flight Number: _____________________________Arrival Date/Time:__________________________ Hotel Check-in Date:_________________________Departure Date/Time:_______________________ Hotel Check-out Date:________________________



PAYMENT INFORMATION: � Visa � MasterCard � Discover � Check enclosed

Name of Card Holder: ___________________________________________________________________________

Address: _____________________________________________________________________________________

City:__________________________________ State: __________ Zip: ____________ Country: _______________

Phone Number: _____________________________ E-mail: ___________________________________________

Credit Card Number:________________________________________ Expiration Date: ______________________

Signature of Card Holder: ____________________________________

TOTAL CHARGES:

Take advantage of the MEMBER RATE and JOIN TODAY! Quantity Total

Yes, I would like to be a member of NAF! Please add an ADDITIONAL� $35 (Annual Individual) � $55 (Annual Household)� $100+ (Annual Patron) � $500 (Lifetime) � $55 (Annual Professional)� $50 (Individual Outside U.S.) � $70 (Household and Professional Outside U.S.)You may register for the meeting as a member if you sign up today!

Yes, I’d like to help others attend an annual meeting in the future!Here is my sponsorship contribution!� $75 (Offset of Registration) � $400 (Travel Grant)� Other : _____________ (Any amount is helpful!)

Registration Deadline is February15, 2011Please complete all three pages of the registration form and return to the following address:

National Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447-4752(763) 553-0020 Fax: (763) 553-0167 E-mail: [email protected]

For your convenience, a return envelope has been provided in this issue

Payment Information for NAF MEMBERS Amount Quantity Total

EARLY BIRD: Registration Fee for INDIVIDUAL Members and for $75 ea.Spouse/Caregiver Note: Extended to one caregiver per member.

EARLY BIRD: HOUSEHOLD RATE (Applies to NAF members who $75 ea.have a Household, Patron, or Lifetime Membership. Includes or max. $300family members living at the same address.) Maximum: $300

LATE: Registration for NAF Members (Includes all registrations $100 ea.postmarked after Feb.15 and all registrations at the door )

Payment Information for NON-NAF MEMBERS Amount Quantity Total

Registration Fee for Non-NAF Members $130 ea.

HOUSEHOLD RATE for Non-NAF Members (Maximum family $130 ea.rate for individuals, their spouses and children under 18 who are or max. $520not members of NAF) Maximum: $520

Late Registration for Non-NAF Members (Includes all regis- $155 ea.trations postmarked after Feb.15 and all registrations at the door )

2011NAF AnnualMembership Meeting Registration



Coming to Terms with AtaxiaBy John Cernosek

The following article is an excerpted compilation of a speech given at the 2010 International Ataxia Aware-ness Day picnic hosted by the NAF Chesapeake Chapter and Johns Hopkins Ataxia Center.

We are all here at the Johns Hopkins AtaxiaPicnic because ataxia hurts the people it affects,in so many ways, and each of us is doing some-thing about it. If you just came for the food, acouple points you need to understand goingforward – ataxia is a medical thing, and it’s bad.And I have it.

Now that we’re all up to speed, I’m notgoing to spend my precious publicspeaking moments bad-mouthingataxia. I have too much respect forit. I will discuss some approachesto living with this thing and nothating it. I’ll talk about how thespeaker at last year’s picnic, Dr.Tom Clouse, changed my life byintroducing me to his methods offitness. And I’ll talk about myself.

About MeI had a wonderful childhood –

always the athlete – a great familyand friends and a lot going for me.Sometime in 8th grade, I started to notice thatwhere my friends were growing faster andstronger, I was slowly moving in the other direc-tion. I didn’t know why this was happening, orwhat I could do about it. My body was failingme. I quickly lost faith in myself.

I silently observed this decline throughout highschool – a stumble on the soccer field, a fall onsome steps. Increasingly embarrassing incidents.My friends also observed it, and had some fun atmy expense. My attitude became, “I am a livingjoke.” I like jokes, but I didn’t find this onehilarious.

I got through high school still wonderingwhat was going on, and went to college at SaintJoseph’s University in Philadelphia. One time

during my freshman year, I was on my way backfrom class in the middle of the afternoon and akid told me how awesome it was that I wasalways wasted. I just laughed.

I realized this issue was not fixing itself and afew months later saw the doctor who wouldeventually explain Friedreich’s ataxia (FA) to me.At this point, I was too scared to research it or

even talk about it with my family.I heard what the doctor said, andI felt what it was doing to me, andthat was enough ataxia for myliking. Two years later in mybiology class, FA was actuallymentioned as an example of a raregenetic disease. I couldn’t even say,“Hey teacher, I have that.” I wasstill trying to hide.

I graduated in four years withoutever uttering the word ataxia, andmoved back home.

I wasn’t confident in my abili-ties, and I didn’t have any real direction. And thisataxia thing was getting worse. Times weretough.Confronting Ataxia

About a year out of college I decided to beginfacing everything. I did the research. I startedtalking to my family. My family is my support.I told my friends about ataxia. The scariest mo-ment of my life was in my best friend’s basement,seconds before telling him about ataxia. I hadsuch a hard time getting those words out of mythroat. I had a hard time making the adjustment,accepting who I was, trusting others to acceptwho I was. I still have a hard time with the


John Cernosek



adjustments I have to make. It’s hard to change,and not be in control. It doesn’t matter howgradual the change is. It’s uncomfortable. But,confronting myself was a better option than hid-ing from myself, and from the world.

I had to establish a new identity; one thatmbraced ataxia. I bought a cane that I carry withme in public, mainly to say, “Hey man, I’m notdrunk. There are other things going on with mybody that you don’t especially need to worryabout.” The “HurriCane,” as I call it, achievesthat, and people are now super nice to me. Thecane evokes compassion. Everyone smiles andholds the door. I’d rather not be in this situation,but I’ve witnessed some genuine kindness fromunexpected places as a result of it. That’s all right.

I joined a support group, and involved myselfwith the community. At one of the meetings Imet a woman who set me up with an internshiphelping people to enroll in Medicaid, and it ledto the job I have today. I am a Community WorkIncentives Coordinator at a center for independ-ent living. What that means is, if you’re gettingSocial Security disability benefits and you wantto work, and you want to know how your

benefits will be affected by your income, youcall me. It is not my dream job, but it’s some-thing to try my best at; every day I learn moreabout what it means to be accountable; and I’vemade some great friends along the way too. It’sa lot of hard work, but it pays more than just acheck.

In terms of the ataxia, it’s no fun to deal with.I got the cane in 2006 and a wheelchair in 2008,just for distances. I used it more and more. In Julyof 2009 I broke a bone in my foot walking acrossthe room to plug my phone into the charger.With an unstable and declining condition, aweak foot, and six weeks of no activity so it couldheal, I thought my walking days were over.

A New Way to MoveThen, Dr. Tom Clouse came to town. We had

four sessions over two weeks last September. Hetaught me how to improve physically. He has amethod. He explained what needed to be doneto improve and showed me how to do it, and forthe last year I’ve been doing it. It is not easy. It’sextremely frustrating and difficult work. It’s likehaving another job that I don’t love – doing theseintense exercises every night and reading aboutbiomechanics. I’ve been improving, little by lit-tle, so it’s got to be done. I owe it to myself. Thismethod is treatment. I say that with the author-ity of a patient who is diligent with my exercise,diet, research and observations. My symptomscontinue to improve across the board, and thereare absolutely no negative side effects. I recentlyparticipated in a mile walk for Nick Markakis’charity for distressed children. He’s the rightfielder for the Baltimore Orioles, and my favoriteplayer. I finished in last place by a good halfhour, but I finished the mile with no help, andI got a picture with Nick and his autograph. Itwas awesome. And I have Dr. Clouse to thank.

I don’t know how to express the emotions thatI feel when I notice an improvement. There’s alittle party inside of my brain, a sensation of newindependence, then it’s back to work, becausethere’s still a ways to go.

Coming to Terms with AtaxiaContinued from page 33

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NAR is OnlineThe purpose of the National Ataxia

Registry (NAR) is to collect basic informa-tion on individuals with all types of ataxias.This information will be used to facilitateand expedite clinical trials and get us allcloser to treatments for ataxias, includingthe Spinocerebellar Ataxias (SCA’s).Go to www.NationalAtaxiaRegistry.org to

register. If you have questions or encounterproblems, please contact the ResearchCoordinator by e-mail at [email protected] or leave a voice-mail message with your name and phonenumber at (352) 273-9194.



After being misdiagnosed for quite a few yearswith symptoms of unbalance, clumsiness,fatigue, and some dizziness; I finally went to theMayo Clinic in Minnesota and received a diag-nosis of sporadic SCA (a neurological disease thatmight be hereditary). I was told I should considerintravenous drugs to possibly stop the progres-sion of this disease. I came home to Californiadevastated. I was unsure of how my life wouldbe from then on. I did know I wanted to tryother alternatives before I committed to takingprescription drugs. I saw takingdrugs as a last resort.

My first step was to try a gluten-free food plan. I began to see someresults and then wanted to experi-ment more with nutrition. Some-one told me that when others hadeliminated f lour, refined sugar andalcohol from their dietary habitsthat it helped alleviate symptoms oftheir disease. I thought it would beworth a try. I wasn’t sure how Iwould adjust to eliminating f louror refined sugar products. But, Iwas introduced to a new way of eating; nothingprocessed or prepared, no additives, and onlyfresh organic foods. I knew I could easily giveup f lour and alcohol, but sugar would be achallenge. Sugar is hidden in almost all processedfoods.

I joined a 12-step group that supports me ineliminating all f lour, refined sugar and alcohol. Itwas easy for me to avoid f lour since I’d alreadybeen off gluten. Alcohol was also easy because Inoticed the negative effects after a few sips. Itwould increase problems with my gait, slur myspeech and intensify my neurological symptoms.Sugar was more challenging. I went throughwithdrawals and never wanted to eat sugar again.

I had no idea just how bad it was for my body.With the help and understanding of my groupsponsor, I got through it.

After being off f lour and refined sugar for threedays I noticed that my mind became clearer, andcontinued to become clearer each day. I alsobegan to lose that bloated look, and started gain-ing more energy while losing excess weight. Thatgave me the incentive to continue because itseemed to be working.

Most of the symptoms have been gone for overtwo years. I attribute my improvedhealth and SCA remission to my12-step program and new eatinghabits. Now I listen to my bodyinstead of denying what it’stelling me. And I don’t pushthrough pain or make otherpeople’s needs more importantthan my own.

I have had two MRI’s to datethat do not show any more degen-eration. So I am hopeful that byliving a healthy lifestyle, I will beable to help keep most of my

symptoms at bay. But if it slowly progresses that’sOK too, because I’m presently living each daywith more energy. And, I’m grateful that I founda 12-step program that will help keep me ontrack.

I’ve been told by many doctors that it is notpossible to stop the progression of this degener-ative disease. But the lessening of my symptoms,and the energy gained has brought me suchrelief. Not having any f lour, refined sugar oralcohol; eating weighed and measured amountsof food that my body needs to be healthy; takingregular naps; getting rid of things that just don’t

My Ataxia DietBy Jeannie Smith Ball


Jeannie Smith Ball



enhance my life any longer and replacing themwith healthier things I can do for myself, hasgiven me more quality of life while I’m here.

I found my food plan and lifestyle has affectedthe people around me in many ways. People thatknow me see a huge change, not only in myweight, but my actions. I was an angry personbecause I had to deal with frustrating symptomsof a disease, but the serenity I have gained isworth so much.

I’m grateful to have found spiritual, mental andphysical discipline guided by something outsideof myself and it seems to be working for me. Youcould say I’m practicing self care daily. Theeffects are amazing!

If you are interested in learning more aboutJeannie’s food plan you may contact her [email protected].

My Ataxia DietContinued from page 35

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Society forNeuroscience

Annual MeetingHeld in San DiegoBy Earl McLaughlinDid you know a double-blind study was

being conducted in Peru to see if a leafyplant treats or cures ataxia? That was oneof the many interesting items learned at theSociety for Neuroscience Annual Meetingheld in November in San Diego.Members and friends of the San Diego

Ataxia Support Group staffed an exhibitbooth for the NAF. They handed out litera-ture and educated the over 32,000 atten-dees from around the world.The SFN Annual Meeting is a forum for

the education of physicians, researchers,teachers, and students in the art of neuro-science. In conjunction with this,many com-panies and nonprofit organizations haveexhibit booths. This is an effective way toeducate neurologists about ataxia ... a greatway to increase awareness.Volunteers staffing the booth were Donna

Corrado, Jennifer Molina, Dan Rose, LizSoragini, Jane and Larry Jaffe, Joel Carter,Nancy Ruiz, Carolyn Bertussi, Sue Hagen,and Earl McLaughlin.

NeurologistResource List

The National Ataxia Foundation needsyour help.NAF provides a list of neurologists who

are familiar with sporadic and hereditaryataxia and can provide good clinical care tothose with ataxia. The current lists havenames of doctors, movement disorderclinics or ataxia clinics located in the UnitedStates and Canada. The listings are locatedat www.ataxia.org/resources/neurological-resources.aspx on the NAF website.If you know of a doctor who has provided

excellent care as it relates to ataxia, pleasee-mail the doctor’s name, clinic, addressand phone number to Sue Hagen, PatientServices Director at [email protected] sothat neurologist can be added to thisimportant resource that NAF provides.

There’s StillTime to DonateThere is still time to donate to the 2010

NAF Annual Ataxia Research Drive. Checkspostmarked by December 31 or on-linedonations made on or before midnightDecember 31, 2010 will be eligible for a taxdeduction in 2010.Your 2010 research gift will help sup-

port promising ataxia research studies forfiscal year 2011. Thank you.



Investigate the DUB Activityof Ataxin-3 and its Effect onParkin Stability and ActivityBy Thomas M. Durcan, PhDMontreal Neurological Institute, Quebec, Canada

The following is a research summary of the Post-Doctoral Fellowship Award funded by NAF.

Machado-Joseph disease (MJD), or Spino-cerebellar Ataxia-3 (SCA3), is the most commondominant inherited spinocerebellar ataxia, andcases of SCA3 can often comprise 15-45%of SCA cases in many different countriesand ethnic populations. SCA3 is a progressiveneuro-degenerative disease and it is associatedwith neuronal loss within the cere-bellum and other brain regions.Symptoms of SCA3 present inearly to mid-adult life, with pa-tients developing gait and uncoor-dinated movement. Moreover,patients often develop symptomsthat are observed in Parkinson’sdisease (PD), including a pill-rolling rest tremor, and patientswith such symptoms often respondto L-DOPA, a common dopaminereplacement therapy commonlyused in PD.

In 1994, SCA-3 was linked to a mutationwithin the ataxin-3 gene and further studies havedemonstrated the mutant ataxin-3 to formaggregates within neurons in the affected brainregions of MJD patients. In our proposedresearch plan, we speculate that the mutantataxin-3 in SCA3 patients may interact with aPD-associated protein. Preliminary data inour proposal identifies parkin as the first PD-associated protein to interact with ataxin-3. Inneurons, parkin is neuroprotective and its activ-ity can protect neurons during periods of cellu-lar stress. Mutations in the parkin gene (PARK2)

account for ~50% of early onset PD cases caus-ing a loss of parkin function, ultimately resultingin progressive neurodegeneration in PD patients.

Remarkably, in our study, in both cells andtransgenic mice, we observe a decrease in parkinlevels when the mutant ataxin-3 is present. Overexpression or knockout of the normal ataxin-3

protein had no effect on parkinlevels, raising the intriguing possi-bility that decreased parkin expres-sion in SCA3 patients may be anovel risk factor, contributing tothe pathogenesis of the disease,and also explain why SCA3 pa-tients often develop parkinsoniansymptoms. Furthermore, theidentification of novel molecules/inhibitors to prevent mutantataxin-3-mediated clearance ofparkin may represent a noveltherapeutic approach for SCA3

patients. Thus, our findings demonstrate clearlythat mutant ataxin-3 promotes a decrease inparkin levels in MJD, yet the mechanism isunclear and further work is required to deter-mine if a reduction in parkin levels is critical inthe development of MJD. Presently, my researchis focused on elucidating this mechanism and myfindings during my tenure as an NAF-fundedresearcher helped me achieve success in attain-ing a Postdoctoral Fellowship award (2010-11)from the Parkinson’s Disease Foundation to fur-ther explore the functional relationship betweenataxin-3 and parkin in PD and SCA3.

Dr. Thomas M. Durcan

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As ataxia research moves towards more andmore clinical drug trials, it will be important tohave gender, race and ethnicity information forthose affected with ataxia. This information isbeing gathered in response to ataxia researchersneeding to demonstrate that they are recruitingpatients for their clinical trials from all the racialand ethnic groups and to help better identifyNAF’s efforts in providing programs and serv-ices to all racial and ethnic groups. The NationalAtaxia Foundation is a great source for recruitingthose with ataxia to participate in research and sowe will begin collecting this data. Providing thisinformation to the Foundation is completelyvoluntary and optional.

To provide some background, in 1993, theNational Institutes of Health (NIH) Revitaliza-tion Act directed NIH to establish guidelinesfor including women and minorities in NIH-sponsored clinical research. NIH was directed toensure that women and minorities were includedas subjects, unless their exclusion was justifieddue to circumstances specified by NIH guide-lines. Furthermore, clinical trials were to bedesigned and carried out in a manner that wouldelicit information about individuals of bothgenders and diverse racial and ethnic groups toexamine differential effects on such groups.

The standards have been developed to providea common language for uniformity and compa-rability in the collection and use of data on raceand ethnicity by Federal agencies.

For ethnicity, the FDA recommends thefollowing choices:

• Hispanic or Latino• Not Hispanic or LatinoFor race, the FDA recommends the following

choices:• American Indian or Alaska Native• Asian• Black or African American

• Native Hawaiian or Other Pacific Islander• WhiteThe Office of Management and Budget Stan-

dards for Maintaining, Collecting, and Present-ing Federal Data on Race and Ethnicity (adoptedon October 30, 1997) provided these standardsfor categories and definitions:American Indian or Alaska Native. A person

having origins in any of the original peoples ofNorth and South America (including CentralAmerica), and who maintains tribal affiliation orcommunity attachment.Asian. A person having origins in any of the

original peoples of the Far East, Southeast Asia,or the Indian subcontinent, including, for exam-ple, Cambodia, China, India, Japan, Korea,Malaysia, Pakistan, the Philippine Islands, Thai-land, and Vietnam.Black or African American. A person having ori-

gins in any of the black racial groups of Africa.Terms such as “Haitian” or “Negro” can be usedin addition to “Black or African American.”Hispanic or Latino. A person of Cuban, Mexi-

can, Puerto Rican, South or Central American,or other Spanish culture or origin, regardless ofrace. The term, “Spanish origin,” can be used inaddition to “Hispanic or Latino.”Native Hawaiian or Other Pacific Islander. A

person having origins in any of the original peo-ples of Hawaii, Guam, Samoa, or other PacificIslands.White. A person having origins in any of the

original peoples of Europe, the Middle East, orNorth Africa.

Providing this information to the NationalAtaxia Foundation is optional and will be keptconfidential. If you have any questions about thisrequest for information, please send an e-mailto [email protected] or you may call the office at(763) 553-0020.

Race and Ethnicity Information Needed

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Please complete the form below and mail it using the return envelope provided in this issue,fax it to (763) 553-0167, or e-mail your responses directly to [email protected]. Please makecopies of this form for each person for whom you would like to report this information.

Name: _______________________________Address: _____________________________City ________________________________State ______________ Zip Code: ________Home Phone: ________________________Cell Phone: __________________________E-mail: ______________________________

Ataxia status:____ I am affected

Type of ataxia: ___________________

____ I am at risk for ataxiaType of ataxia: ___________________

Birthdate:Month _______ Day _______ Year _______

Gender: Male ____ Female ____

Ethnic category:____ Hispanic or Latino____ Not Hispanic or Latino

Racial category:____ American Indian or Alaska Native____ Asian____ Black or African American____ Native Hawaiian or Other Pacific

Islander____ White

The National Ataxia Foundation’sNew ‘Regional Concept’

The National Ataxia Foundation offers to itsmembers an annual membership meeting inorder to provide the latest information on ataxiaresearch and topics of concern and interestwithin the ataxia community. These meetingsalso provide a setting for sharing, learning, andnetworking.The conferences are hosted each year by an

NAF chapter or support group(s) who help in theplanning, provides volunteers, acquires donateditems, and helps in raising funds in support ofthe meeting.These conferences over the years have seen

continued growth in terms of expanded pro-grams, exceptional speakers, and number ofattendees. Much credit is given to the Founda-tion’s Annual Membership Meeting Chair, ArnieGruetzmacher, for the continued success and in-novations of these meetings. Arnie has chairedmore than 30 very successful annual member-

ship meetings and is looking forward in chairingfuture meetings.To help address the continued expansion and

costs of these meetings, a new concept hasbeen developed called “The Regional Concept”to help bring in additional support groups andchapters in co-hosting these meetings. Addi-tionally, these groups will have a larger windowto assist in raising funds to help underwrite partof the costs of these conferences to helpensure continued quality programs and afford-ability to our attendees. A further enhancementof this program is to provide more participationopportunities to potential attendees by diversi-fying the location of these conferences.If you are an NAF Chapter President, Support

Group Leader, or Ambassador please plan onattending the Leadership Meeting at the 2011Annual Membership Meeting for future plans onthe “Regional Concept.”



look forward to having it return to Atlanta.

DE/PA Ataxia Support GroupBy Christina Rakshys

The DE/PA Support and Information Group’smeeting on Oct. 23 at the University ofDelaware in Newark was quite a success. Therewere 22 guests (11 ataxians) in attendance,including several first-timers.

Dr. Rob Wilson’s presentation, “TherapeuticDevelopment for Ataxias: The Friedreich’sAtaxia Paradigm” was excellent. Through theuse of showing us many slides pertaining to theresearch and development for FRDA treatment,he relayed his message that therapeutics and drugdevelopment are very complex, time-consum-ing, rule-restrictive and labor-intensive applica-tions. He definitely wowed the audience withhis research know-how. Additionally, he could-n’t speak more highly of the NAF’s research,support and activities, such as the ataxia registry.He encouraged ambassadorship of ataxia �

Greater AtlantaAtaxia Support Group UpdateBy Dave Zilles

On Nov. 6 the Greater Atlanta Ataxia Supportgroup held their meeting at the Emory Rehabil-itation Center. There were 15 members in at-tendance, including families from Chattanooga,TN and Charlotte, NC. Our speaker was DavidPollen, an attorney who serves both the elderlyand disabled communities. David presented anupdate on the status of Georgia regarding Med-icaid Waivers as well as things to consider forspecial needs planning and long-term care.

Elections for officers were held and DaveZilles, Lynn Robinette and Greg Rooks wereelected to serve as co-directors. We discussedour 2011 meeting schedule as well as talkedabout doing a Walk and Roll Event next year forInternational Ataxia Awareness Day. Several ofthe support group members volunteered at theNAF Booth at the Atlanta Abilities Expo inOctober. This event was very successful and we

Members of the Greater Atlanta Ataxia Support Group at their Nov. 6 meeting.



and participation of clinical research (enrollmentof the registry, for starters). (See pages 10-11.)

Our physical therapist presentation by GraceKeenan was also excellent. In addition to givingus helpful hints about destabilizing, improvingstability and cardiovascular exercise, she alsomentioned the study at JHH – part of a nation-wide study that includes balance issues. One ofthe co-leaders, Joe DeCrescenzo, let the audi-ence know that he is a participant in Dr. SarahYing’s SCA2 Natural History Study at JohnsHopkins. He also informed us that they are stillrecruiting for this study. (See page 8.)

We plan to meet again in the Spring of 2011,and the location of the meeting will most likelybe Hershey Medical Center, Hershey, PA.

Orange CountyAtaxia Support Group UpdateBy Theresa Gonzales and Daniel Navar

The Orange County Ataxia Support Groupmeets every other month on the third Saturdayof the month from 1:30 – 4 p.m. at the OrangeCoast Memorial Medical Center.

At all of our meetings this year, massage ther-apist Terry Solomon and various massage ther-apy students provided therapeutic massages to allattendees. On June 19, Rev. Paula Swavely wasour guest speaker. She conducted meditationexercises with the group to achieve relaxationand mental fortitude. On Aug. 14, leaders andsome members of OCASG and LAASG metwith NAF representative Lori Shogren to dis-cuss the Annual Membership Meeting (AMM).The AMM will be held at the Los Angeles(LAX) Hilton.

On Sept. 25, the Orange County SupportGroup collaborated with the Los AngelesSupport Group to host The second annual Walkn’ Roll for Ataxia Awareness event. This year’sevent was held in honor of Sherri Alexander(former LAASG member). The event was atremendous success: we raised over $38,000in donations. For more information about the

Orange County Ataxia Support Group, visitwww.ataxia.org/chapters/OrangeCounty/default.aspx.

Alabama Ataxia Support Group UpdateBy Becky Donnelly

The Alabama Ataxia Support Group met Oct.23 at Covenant Presbyterian Church in Home-wood, AL. Our speaker was Dr. Tom Clouse,a consultant, speaker, and founder of The Voicefor the Impaired at TLC Endeavors, Inc., ofPensacola, FL. Dr. Clouse presented on howhe has managed his struggles with ataxia formany years and still walks and continues to playgolf.

He shared with the group his techniques oncontinuing a normal routine of daily living andchallenged the group to not be resigned to theirpathology but to be proactive in learning toadapt better ways to keep active and productive.

The group expressed much interest in Dr.Clouse’s presentation and his demonstrations.Dr. Clouse offered private sessions at a later dateto those who were interested.

After the program, the group enjoyed lunchand fellowship together. The first meeting of2011 will be Jan. 29.

Denver Ataxia Support Group UpdateBy Charlotte DePew

Our July meeting had over 20 attendees andfive new members, two of which came fromAlbuquerque, NM and Larimer, WY. Thespeaker for this meeting was a Financial Advisorspecializing in finance issues for individuals withdisabilities and their families.

The October meeting was attended by 19ataxians and their family and friends. One mem-ber introduced her new service dog which led toa brief discussion of the resources and process ofgetting a service dog. Another member reported




his experience in being part of an SCA2 study inSalt Lake City.

Our speaker was a group member withFriedreich’s ataxia, Natha. She shared her expe-riences of going to China for four weeks of stemcell therapy in August. She discussed differencesin cultures, living environments, medicalphilosophy, and health care. Natha shared herknowledge of stem cell therapy and presentedsome disadvantages to the program such as cost(the program had more than $25,000 ofup-front costs), unpredictable outcomes, lack offollow-up, and more. Two months after hertreatment, Natha has observed subtle improve-ments, especially in her speech. Since improve-ment occurs three to six months after treatment,she will keep us informed of further changes inher symptoms.

During the October meeting, a volunteeroffered to make an electronic tri-fold informa-tional brochure about the Denver Ataxia Sup-port. It will be presented to NAF for approvalbefore printing. Several people volunteered towork on a committee for the first Denver Walkn’ Roll in 2011.

Member Benetta Price is publishing her sec-ond book: “Love, Tea & Advice from a DyingMother.” Her first book, “Life Really Does GoOn,” is about her grieving process for the love ofher life – her late husband. Also, Mike Williams(who has SCA 3) and a media associate produceda DVD titled “Stop Motion.” The DVD focuseson Mike’s coping abilities and how his diseasehas impacted his father and their relationship.

Our next meeting is Jan. 15. For the speaker,the group asked that we have a neurologist whois knowledgeable on ataxia address what is newin research and answer questions.

Chicago AreaAtaxia Support Group UpdateBy Richard Carr

There were at least 43 attending the Sept. 19meeting of CAASG. The attendance was twicethat of the typical CAASG bi-monthly meet-ings. The reason for the extraordinary atten-dance was a presentation by Dr. ChristopherGomez, Chairman of the Department of Neu-rology at the University of Chicago. Dr. Gomezis known world-wide for ataxia research and alsofor his clinical practice of ataxia patients.

Dr. Gomez provided a two-hour question �

Chapter and Support Group NewsContinued from page 41

Members of the Denver Ataxia Support Group at their October meeting.



and answer session in which questions onsubjects ranging from “how to live better” to“what’s new in ataxia research” were covered.We thank Dr. Gomez for addressing our manythoughts and concerns.

Jonas Cepkauskas also gets a big “thank you”for his efforts to publicize Dr. Gomez’s presen-tation. Individuals came from as far away as St.Louis to attend. Mary Donahue was the volun-teer leader of the September meeting. We aresorry to have to report that one of our members,Penny Golminas, passed away on Nov. 4. Pennyand her husband, Don, were active members ofthe CAASG for many years.

Northern CaliforniaAtaxia Support Group UpdateBy Rebecca Douglass

At our Oct. 9 meeting, Support Group leaderMike Fernandes opened our quarterly meetingafter our “mix and mingle” time. Announce-ments were made and lunch was served.

Joanne Loveland was recognized for hertremendous effort with the Walk n’ Roll, whichwe held in September for Ataxia Awareness Day.She reported that $6,000 was raised for ataxiaresearch.

Our program for the day was on preventingfalls, a very appropriate subject for all of us. Wewere given helpful handouts and a very goodpresentation by Alayne Balke from SeniorOutreach Services of Contra Costa County.

Mike announced the upcoming eighth annualAll California Ataxia Research Meeting(ACARM) will be held on Dec. 12 in Sacra-mento at the Holliday Inn at 5321 Date Ave. OnDec. 11 there is a no-host dinner for meetingattendees. Rooms are available for those wishingto spend Saturday night. Lunch is includedin the registration fee. Registration forms canbe found in the previous two (Summer and Fall)issues of Generations. For more informationplease contact Joanne Loveland at (925) 735-7037 or [email protected].

The group’s next meeting is scheduled for11:30 a.m., Jan. 8, 2011 at Our Savior’s LutheranChurch, 1035 Carol Lane, Lafayette, CA. Lunchand program is $7; there is no cost for program-only. Reservations for lunch are required. Pleasecontact Mike Fernandes for details at (925) 516-6906 or [email protected].

West Central FloridaAtaxia Support Group UpdateBy Cindy Steever-Ziegler

May meeting – On May 22 Cathy Kirchnermade a phenomenal presentation to the groupon resiliency. Resiliency is the ability to recoverrapidly from an illness, change, and misfortune.As a wife of an ataxia patient, she had some greatinsight for those dealing with ataxia as well as thecaregivers and those associated with individualswith ataxia. The membership thoroughly en-joyed her presentation and wish for her to speakagain. Our group would like to thank Cathy forbeing so willing to bring us all information thatwe can use in our daily lives.

We also had a presentation from Jill Jared onthe MOTOmed, a movement therapy system.This system can be used by individuals who areconfined to a bed, wheelchair, or people withwalking disabilities. The MOTOmed Move-ment Therapy System – with motor and softwareassistance gently moves and loosens your armsand legs from the comfort of your own wheel-chair or bed, anytime that is convenient for you.

One of our members tried this piece of equip-ment and in only a few minutes could feel howthe therapy assisted in stretching her muscles.The main thought here is that a little exercise ismuch, much better than nothing.July meeting – During our July meeting, we

were fortunate to have Jeannie Stephenson, P.T.,M.S., N.C.S., and a Board Certified Specialist inNeurological Physical Therapy from USF. Shespoke about physical therapy and the importance




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of continuing to use our muscles. One of herassistants, Jillian Sadhi, was also present and theyboth stressed the importance of how physicaltherapy goes beyond the physical capabilities, itgoes beyond into the function of everyday living.Jeannie and Jillian are true advocates for peoplewith ataxia and want to do what they can to help.They reminded us that physical therapy involvesstrength, motor control, spasticity, muscle tone,balance, and gait. Finding what works for eachindividual is of high concern and the mainobjective of physical therapists.

We were also fortunate to have a representa-tive, Patty, from New Horizon, a service dogorganization, along with Charlie and his servicedog. Charlie showed a slide presentation of howhe utilizes his service dog to have a better qualityof life.

September meeting: After lunch at the USFMorsani Center on Sept. 11 the support groupmet to discuss ideas for the upcoming year. Sincesome of our members live in the middle of thestate, we discussed having our meetings on thefirst Saturday of every other month to avoid pos-sible conf lict with the Northeast Ataxia SupportGroup meetings. Members will benefit with theoption to attend the meeting that best fits their

schedule — allowing them to share more timewith other individuals with ataxia.

Charlie Kirchner was able to solidify a repre-sentative from Dragon Naturally to attend ourJan. 11 meeting. We are asking our membersto invite anyone that may be interested in thissoftware to attend.

Dr. Theresa Zesiewicz, Director of Researchat USF reported on the success of the Energy Ballthat USF sponsored with FARA on Aug. 26-28.She was very pleased with the turnout and re-ported that Lynn Walker was doing some studiesand was very positive about finding a possibletreatment in the near future. Currently, Dr.Zesiewicz is travelling every weekend to follow-

up with individuals partic-ipating in the clinical studythat is currently underway.She has a busy scheduleand is excited and positiveabout the potential resultsof the study. Our groupsent a memorial donationto the Frances ZesiewiczMemorial Fund at USFto honor Dr. TheresaZesiewicz’s mother, whopassed away after a longbattle with Parkinson’sdisease.

Iowa Ataxia Support Group UpdateBy Emily Medina

This summer we welcomed Dr. Clouse to DesMoines to help us walk and move better – andeven to dance! He was here for almost two weeksbefore heading on to his next destination. Manypeople from our support group took advantageof this wonderful opportunity, and even thoughit was hard (and at times frustrating work), funwas had by all. We waltzed, two-stepped, anddanced our way into the evening. We hosted anoutdoor picnic to say a fond farewell to Dr.Clouse.

Chapter and Support Group NewsContinued from page 43

Members of the Iowa Ataxia Support Group at their summer picnic.



The National Ataxia Foundation has a large network of volunteers who serve as support group leaders,chapter presidents, and ambassadors for our organization. These volunteers help identify important localresources and professional care for people with ataxia and their families.If you or a loved one has been newly diagnosed with ataxia, please contact the NAF leader nearest you. Ifthere is not a group in your area, we encourage you to visit our online social networks. You may also consid-er starting a support group in your area or becoming an NAF ambassador. If you are interested in thesevolunteer positions please contact Lori Shogren of the NAF staff at [email protected] or (763) 553-0020.The use of these names and contact information for any purpose other than requesting information regardingNAF or joining a chapter or support group is strictly prohibited.

NAF Directoryof Chapters,Support Groups and Ambassadors

Social NetworksNAF BULLETIN BOARDModerator – Atillaww.ataxia.org/forum/toast.aspNAF CHAT ROOMModerator – Della ([email protected])www.ataxia.org/connect/chat-rooms.aspxNAF FACEBOOK GROUPwww.facebook.com/group.php?gid=93226257641NAF FACEBOOK CAUSESwww.causes.com/causes/368602?m=71bb3202&recruiter_id=52877151NAF FACEBOOK FANSwww.facebook.com/lshogren?ref=profile#!/pages/National-Ataxia-Foundation/227766109304

Chapters, Support Groupsand Ambassadors

— ALABAMA —ALABAMA SUPPORT GROUP LEADERBecky DonnellyHoover, AL(205) 987-2883E-mail: [email protected]/chapters/Birmingham/default.aspxAMBASSADORSMillard H. McWhorter IIIAndalusia, AL(334) 222-3423E-mail: [email protected]/chapters/MillardMcWhorter/default.aspxDianne Blain WilliamsonHazel Green, AL(256) 828-4858E-mail: [email protected]/chapters/DianneWilliamson/default.aspx

— ARKANSAS —AMBASSADORSJudy and David King

Hot Springs Village, ARE-mail: [email protected]/chapters/JudyKing/default.aspx

— ARIZONA —PHOENIX AREA SUPPORT GROUP LEADERSRita GarciaChandler, AZ(480) 726-3579E-mail: [email protected]/chapters/Phoenix/default.aspxMary FuchsSun Lakes, AZ(480) 883-7633E-mail: [email protected]/chapters/Phoenix/default.aspxTUCSON AREA SUPPORT GROUP LEADERBart BeckTucson, AZ(520) 885-8326E-mail: [email protected]/chapters/Tucson/default.aspx

— CALIFORNIA —LOS ANGELES AREA SUPPORT GROUP LEADERSherry McLaughlinAltadena, CA(626) 791-1558E-mail: [email protected] Web: http://laasg-ca.infowww.ataxia.org/chapters/LosAngeles/default.aspxN. CALIFORNIA AREA SUPPORT GROUP LEADERMike FernandesBrentwood, CA(925) 516-6906E-mail: [email protected]/chapters/NorthernCalifornia/default.aspxORANGE COUNTY AREA SUPPORT GROUP LEADERDaniel NavarMontebello, CA(323) 788-7751E-mail: [email protected]



www.ataxia.org/chapters/OrangeCounty/default.aspxSAN DIEGO AREA SUPPORT GROUP LEADEREarl McLaughlinEl Cajon, CA(619) 447-3753E-mail: [email protected] (Earl: [email protected])www.ataxia.org/chapters/SanDiego/default.aspxAMBASSADORSMike BetchelClovis, CA(559) 281-9188E-mail: [email protected]/chapters/mike/default.aspxBarbara BynumMerced, CA(209) 383-1275E-mail: [email protected]/chapters/BarbaraBynum/default.aspxDeborah OmictinHayward, CA(510) 783-3190E-mail: [email protected]/chapters/DeborahO/default.aspx

— COLORADO —DENVER AREA SUPPORT GROUP LEADERCharlotte DePewAurora, CO(720) 379- 6887E-mail: [email protected]/chapters/Denver/default.aspx

— CONNECTICUT —TRI-STATE SUPPORT GROUP LEADERDenise Mitchell(212) 844-8711E-mail: [email protected]/chapters/Tri-State/default.aspxAMBASSADORTerre Di PlacitoTorrington, CT(860) 489-5092www.ataxia.org/chapters/TerreDiPlacito/default.aspx

— DELAWARE —DE AND PA SUPPORT GROUP LEADERSJoseph DeCrescenzoNewark, DE(302) 369-9287E-mail: [email protected]/chapters/Rakshys/default.aspxChristina RakshysAllentown, PA(610) 395-6905E-mail: [email protected]/chapters/Rakshys/default.aspx

— FLORIDA —

NORTHEAST FLORIDA SUPPORT GROUP LEADERSSteve & Carole BrownOcala, FL(352) 591-5095E-mail: [email protected] & Ann MayoSt. Augustine, FL(904) 471-4579E-mail: [email protected] & Sherri RichwineJacksonville, FL(904) 996-0699E-mail: [email protected]/chapters/NortheastFlorida/default.aspxWEST CENTRAL FLORIDA SUPPORT GROUP LEADERCindy Steever-ZieglerBonita Springs, FL(239) 878-3092E-mail: [email protected]/chapters/TampaBay/default.aspxAMBASSADORSEleanor DalyDelray Beach, FL(561) 272-9615E-mail: [email protected] HendersonOrlando, FL(407) 568-9092E-mail: [email protected]/chapters/JimHenderson/default.aspxMeghan McBreartyTallahassee, FL(850) 656-9597E-mail: [email protected]/chapters/McBrearty/default.aspx

— GEORGIA —GREATER ATLANTA SUPPORT GROUP LEADERSLynn RobinetteLawrenceville, GA(770) 982-0275E-mail: [email protected]/chapters/Atlanta/default.aspxGreg RooksAtlanta, GA(404) 822-7451E-mail: [email protected] ZillesAtlanta, GA(770) 399-6710E-mail: [email protected] AdamsSavannah, GAE-mail: [email protected]/chapters/KristieAdams/default.aspx

— ILLINOIS —GREATER CHICAGO AREA SUPPORT GROUP LEADERRichard CarrMount Prospect, IL


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NAF DirectoryContinued from page 45


(847) 253-2920E-mail: [email protected]/chapters/Chicago/default.aspxMETRO AREA CHICAGO SUPPORT GROUP LEADERChristopher MarshChicago, IL(773) 334-1667E-mail: [email protected]://health.groups.yahoo.com/group/u_r_notalone/www.ataxia.org/chapters/ChrisMarsh/default.aspxAMBASSADORElaine DarteBelleville, IL(618) 397-3259E-mail: [email protected]/chapters/SouthernIllinois/default.aspx

— IOWA —IOWA SUPPORT GROUP LEADEREmily MedinaUrbandale, IA(515) 727-8713E-mail: [email protected]/chapters/EmilyMedina/default.aspx

— KENTUCKY —AMBASSADORJanice JohnsonBrownsville, KY(270) 597-3854www.ataxia.org/chapters/JaniceJohnson/default.aspx

— LOUISIANA —LOUISIANA CHAPTER PRESIDENTCarla HaglerSlidell, LA(985) 643-0783E-mail: [email protected]: www.angelfire.com/la/ataxiachapterwww.ataxia.org/chapters/Louisiana/default.aspx

— MAINE —MAINE SUPPORT GROUP LEADERKelley RollinsBowdoinham, MEE-mail: [email protected]/chapters/Maine/default.aspx

— MARYLAND —CHESAPEAKE CHAPTER PRESIDENTCarolyn DavisVienna, VA(703) 759-2008E-mail: [email protected]/chapters/Chesapeake/default.aspxJOHNS HOPKINS ATAXIA SUPPORT GROUP LEADERJill DetherageBaltimore MD(410) 614-6577E-mail: [email protected]/chapters/JHASG/default.aspxAMBASSADOR

Karen RosenbergerFrederick, MD(301) 682-5386E-mail: [email protected]/chapters/KarenRosenberger/default.aspx

— MASSACHUSETTS —NEW ENGLAND SUPPORT GROUP LEADERSDonna and Richard GorzelaAndover, MA(978) 475-8072www.ataxia.org/chapters/NewEngland/default.aspx

— MICHIGAN —Detroit Area Support Group LeaderTanya TunstullDetroit, MI(313) 736-2827E-mail: [email protected]/chapters/Detroit/default.aspxWESTERN MICHIGAN SUPPORT GROUP LEADERLynn K. BallGrand Rapids, MI(616) 735-2303E-mail: [email protected]/chapters/LynnBall/default.aspx

— MINNESOTA —TWIN CITIES AREA SUPPORT GROUP LEADERLenore Healey SchultzMinneapolis, MN(612) 724-3784E-mail: [email protected]/chapters/TwinCities/default.aspxAMBASSADORSLori GoetzmanRochester, MN(507) 282-7127E-mail: [email protected]/chapters/LoriGoetzman/default.aspxJULIE SCHUURLuverne, MN(507) 283-2555E-mail: [email protected]/chapters/JulieSchuur/default.aspx

— MISSISSIPPI —MISSISSIPPI CHAPTER PRESIDENTCamille DaglioHattiesburg, MSE-mail: [email protected]/chapters/Mississippi/default.aspx

— MISSOURI —KANSAS CITY SUPPORT GROUP LEADERSJim ClarkGladstone, MO(816) 468-7260E-mail: [email protected]/chapters/KansasCity/default.aspx




Lois GoodmanIndependence, MO(816) 257-2428www.ataxia.org/chapters/KansasCity/default.aspxAMBASSADORSRoger CooleyColumbia, MO(573) 474-7232 before noonE-mail: [email protected]/chapters/RogerCooley/default.aspxSusan L. Strode, PhDJefferson City, MO(573) 659-4759E-mail: [email protected]: www.dr-susie.com

— NEW JERSEY —TRI-STATE SUPPORT GROUP LEADERDenise Mitchell(212) 844-8711E-mail: [email protected]/chapters/Tri-State/default.aspx

— NEW YORK —CENTRAL NEW YORK SUPPORT GROUP LEADERLinda JohnsonCazenovia, NYE-mail: [email protected]/chapters/CentralNewYork/default.aspxTRI-STATE SUPPORT GROUP LEADERDenise Mitchell(212) 844-8711E-mail: [email protected]/chapters/Tri-State/default.aspxAMBASSADORValerie RuggieroFishkill, NY(845) 897-5632E-mail: [email protected]/chapters/ValerieRuggiero/default.aspx

— NORTH CAROLINA —AMBASSADORNorma BryantCary, NC(513) 543-9563E-mail: [email protected]/chapters/Norma/default.aspx

— OHIO —AMBASSADORSJoe MillerMesopotamia, OH(440) 693-4454E-mail: [email protected]/chapters/JoeMiller/default.aspxJennifer MuellerCincinnati, OH

(513) 834-7002E-mail: [email protected]/chapters/JenniferM/default.aspxCecelia UrbanskiMentor, OH(440) 255-8284E-mail: [email protected]/chapters/CentralOhio/default.aspx

— OKLAHOMA —OKLAHOMA SUPPORT GROUP LEADERDarrell OwensBartlesville, OK(918) 331-9530E-mail: [email protected]/chapters/DarrellOwens/default.aspxAMBASSADORMark DvorakNorman, OK(405) 447-6085E-mail: [email protected]/chapters/Ambassador/default.aspx

— OREGON —WILLAMETTE VALLEY SUPPORT GROUP LEADERIvy Stilwell, CCC-SLPAlbany, OR(541) 812-4162 Fax: (541) 812-4614E-mail: [email protected]/chapters/Willamette/default.aspx

— PENNSYLVANIA —SOUTHEAST PENNSYLVANIA SUPPORT GROUP LEADERLiz Nussear(610) 272-1502E-mail: [email protected]/chapters/SEPennsylvania/default.aspxPA AND DE SUPPORT GROUP LEADERSJoseph DeCrescenzoNewark, DE(302) 369-9287E-mail: [email protected]/chapters/Rakshys/default.aspxChristina RakshysAllentown, PA(610) 395-6905E-mail: [email protected]/chapters/Rakshys/default.aspxAMBASSADORDale RummelGlenshaw, PA(412) 487-7312E-mail: [email protected] [email protected]/chapters/Dale/default.aspx

— SOUTH CAROLINA —AMBASSADORCece RussellEasley, SC(864) 220-3395E-mail: [email protected]


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NAF DirectoryContinued from page 47


www.ataxia.org/chapters/Carolinas/default.aspx

— TENNESSEE —NASHVILLE AREA SUPPORT GROUP LEADERVicki TylerNashville, TN(615) 646-3024E-mail: [email protected]/chapters/VickiTyler/default.aspx

— TEXAS —CENTRAL TEXAS SUPPORT GROUP LEADERLinda CrawleyLiberty Hill, TX(512) 635-9478E-mail: [email protected] or [email protected]/chapters/Linda/default.aspxHOUSTON AREA SUPPORT GROUP LEADERAngela CloudHouston, TX(281) 693-1826E-mail: [email protected]/chapters/Houston/default.aspxNORTH TEXAS SUPPORT GROUP LEADERDavid Henry Jr.Trophy Club, TXE-mail: [email protected](817) 491-4573www.ataxia.org/chapters/NorthTexas/default.aspxAMBASSADORDana LeBlancOrange, TX(409) 883-5570E-mail: [email protected]: http://ladyd1973.tripod.com/index.htmlwww.ataxia.org/chapters/GoldenTriangle/default.aspx

— UTAH —UTAH SUPPORT GROUP LEADERDr. Julia KleinschmidtSalt Lake City, UT(801) 585-2213E-mail: [email protected]/chapters/Utah/default.aspx

— VIRGINIA —CHESAPEAKE CHAPTER PRESIDENTCarolyn DavisVienna, VA(703) 759-2008E-mail: [email protected]/chapters/Chesapeake/default.aspxAMBASSADORSDonna RingSt. Stephens Church, VA(804) 769-3983E-mail: [email protected]/chapters/Ring/default.aspxDick SargentSpringfield, VA(703) 321-9143

E-mail: [email protected]/chapters/DickSargent/default.aspx

— WASHINGTON —SEATTLE AREA SUPPORT GROUP LEADERMilly LewendonKirkland, WA(425) 823-6239E-mail: [email protected]/chapters/Seattle/default.aspxAMBASSADORLinda JacoySpokane, WA(509) 482-8501E-mail: [email protected]/chapters/Spokane/default.aspx

InternationalSupport Groups and Ambassadors

— AUSTRALIA —AMBASSADORRenee Moore (Nee McCallum)Hocking, W. Australia61-8-9404-7052E-mail: [email protected]/chapters/ReneeMoore/default.aspx

— CANADA —AMBASSADORSSusan M. DuncanOttawa, Ontario(613) 820-7990E-mail: [email protected]/chapters/SusanDuncan/default.aspxPrentis ClairmontOttawa, Ontario(613) 864-8545E-mail: [email protected]/chapters/PrentisClairmont/default.aspxTerry GreenwoodWinnipeg, Manitoba(204) 488-4155E-mail: [email protected]/chapters/TerryGreenwood/default.aspx

— INDIA —INDIA ATAXIA SUPPORT GROUP LEADERChandu Prasad George. CH,Secunderabad, IndiaPhone: 0091-040-27961269Mobile: 0091-9949019410 Fax: 091-040-27971043E-mail: [email protected]/chapters/Chandu/default.aspxAMBASSADORAbhinav KediaHaryana, IndiaPhone: 0091-0180-2681157Mobile: 0091-0-9466355238E-mail: [email protected]/chapters/AbhinavKedia/default.aspx


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Calendar of EventsSaturday, January 8, 2011Central Texas Ataxia Support Group MeetingMeets the first Saturday of every other monthfrom 11 a.m. to 1:30 p.m. at the Dell Children’sMedical Center of Central TX, 4900 Mueller Blvd.,Austin, TX. We will meet in Central ConferenceRoom 4E 031 A&B (located between 4N&4C) onthe 4th floor. The medical Center’s main numberis (512) 324-0000. For more information pleasecontact Linda Crawley at (512) 635-9478 or [email protected]. www.ataxia.org/chapters/Linda/default.aspx

Los Angeles Area Ataxia Support Group Meeting2 – 4 p.m. Annual Planning Meeting. We meet thesecond Saturday of every other month. For meet-ing location and general information, contactSherry McLaughlin at (626) 791-1558 or [email protected]. www.ataxia.org/chapters/LosAngeles/default.aspx

North Texas Ataxia Support Group MeetingThe group meets the second Saturday of everymonth from 10 a.m. to noon at the Las ColinasCancer Center located at 7415 Las Colinas Blvd.,Irving TX. Parking is free and the building is hand-icap accessible. We meet in the front lobby of theLas Colinas Cancer Center; it is a one-story build-ing behind the Regions Bank. For additionalinformation please contact David Henry Jr. [email protected]. Please check the group’sweb page for updates. www.ataxia.org/chapters/NorthTexas/default.aspx

Northern CaliforniaAtaxia Support Group MeetingThe Northern California Ataxia Support Group,(NCASG) meets quarterly on the second Saturdayof the month from 11:30 a.m. to 3:30 p.m. at OurSavior’s Lutheran Church in Lafayette, CA. Formore information contact Mike Fernandes at(925) 516-6906 or [email protected]/chapters/NorthernCalifornia/default.aspx

San Diego Ataxia Support Group Meeting1 p.m. – 3 p.m. at Sharp Rehabilitation Center,2999 Health Center Dr. on the East side of Hwy163 between Genessee Ave. and Mesa CollegeDr. behind Sharp Memorial Hospital. Plenty of freeparking. For more information contact EarlMcLaughlin at (619) 447-3753 or [email protected].

www.ataxia.org/chapters/SanDiego/default.aspx

Southeast PA Ataxia Support Group Meeting10 a.m. – 11:30 a.m. on the second Saturday atMercy Suburban Hospital, Walkup Room 2nd floorfollowed by lunch at Applebee’s across the street.ATTENDEES MUST RSVP to Liz Nussear by theFriday before the meeting at (610) 272-1502 [email protected]. www.ataxia.org/chapters/SEPennsylvania/default.aspx

West Central FL Ataxia Support Group MeetingNoon – 3 p.m. at the USF Morsani Center, 3000Medical Park Dr. (MDC 25) Tampa, FL. Presenta-tion from Dragon Naturally Speaking. Bringanybody you know that may be interested in thisproduct! For more information please contactCindy Steever-Ziegler at (239) 878-3092 [email protected]. www.ataxia.org/chapters/TampaBay/default.aspx

Wednesday, January 12, 2011Willamette Valley Ataxia Support Group Meeting11:30 a.m. – 1 p.m. on the second Wednesday ofevery month at Albany General Hospital, 10466th Ave. SW, Albany, OR. For more informationplease contact Ivy Stilwell at (541) 812-4162 [email protected]. www.ataxia.org/chapters/Willamette/default.aspx

Thursday, January 13, 2011Tri-State Ataxia Support Group Meeting6 p.m. – 8 p.m. at Beth Israel, Phillips Ambula-tory Care Center (PACC), usually 5th floor confer-ence rooms, 10 Union Square, New York, NY.For more information contact Denise Mitchell at(212) 844-8711 or [email protected]. www.ataxia.org/chapters/Tri-State/default.aspx

Saturday, January 15, 2011Denver Area Ataxia Support Group Meeting1 p.m. – 4 p.m. at Swedish Medical Center, 501E. Hampden Ave., Englewood, CO in meeting roomSpruce A & B. For more information pleasecontact Charlotte Depew at (720) 379-6887 [email protected]. www.ataxia.org/chapters/Denver/default.aspx

Twin Cities Ataxia Support Group Meeting10 a.m. every third Saturday of the month at thePresbyterian Homes of Roseville at 1910 WestCounty Road D, Roseville, MN 55112. For more �

The most current event information is available on the NAF website, www.ataxia.org.


information contact Lenore Healey Schultz [email protected]/chapters/TwinCities/default.aspx

Saturday, January 22, 2011First Annual Rock n’ Roll Benefit for Ataxia8 p.m. – 1 a.m. at the Canal Club, 1545 EastCary St., Richmond, VA. Join us for music, raffleprizes, and family fun! Featuring LIVE local bandfavorites: Reverend D-Ray and The Shockers,3 Bad Men and Before the Machine. For moreinformation contact Tracy Holcombe at (804) 921-3724 or [email protected]. To purchase ticketsin advance, please visit www.thecanalclub.com.Maine Ataxia Support Group Holiday GatheringNoon – 3 p.m. at Captain Newicks in South Port-land. For more information contact Kelley Rollinsat [email protected]. www.ataxia.org/chapters/Maine/default.aspx

Nashville Area Support Group Meeting2 p.m. at Amerigo’s Restaurant –Coolsprings,1656 Westgate Circle, Brentwood, TN. For moreinformation contact Vicki Tyler at (615) 646-3024or [email protected]. www.ataxia.org/chapters/VickiTyler/default.aspx

Saturday, January 29, 2011Alabama Ataxia Support Group Meeting10 a.m. – 2 p.m. at Covenant Presbyterian Churchin Homewood, AL. For more information pleasecontact Becky Donnelly at (205) 987-2883 [email protected]. www.ataxia.org/chapters/Birmingham/default.aspx

Saturday, February 5, 2011Greater Atlanta Ataxia Support Group Meeting1 p.m. at Emory Center for Rehabilitation Medi-cine, 1441 Clifton Rd., Rm 101, Atlanta, GA. Formore information contact Dave Zilles at (770)399-6710 or [email protected]. www.ataxia.org/chapters/Atlanta/default.aspx

Wednesday, February 9, 2011Willamette Valley Ataxia Support Group Meeting11:30 a.m. – 1 p.m. on the second Wednesday ofevery month at Albany General Hospital, 10466th Ave. SW, Albany, OR. For more informationplease contact Ivy Stilwell at (541) 812-4162 [email protected]. www.ataxia.org/chapters/Willamette/default.aspx

Saturday, February 12, 2011Arizona Ataxia Support Group Meeting

1 p.m. at the Arizona Bridge to IndependentLiving & Disability Empowerment Center (ABIL-DEC) Conference Room with speaker Dr. LarrySchut. For more information and directionscontact Rita Garcia (480) 726-3579 or MaryFuchs (480) 883-7633. www.ataxia.org/chapters/Phoenix/default.aspx

Kansas City Area Ataxia Support Group Meeting2 p.m. – 4 p.m. the second Saturday every othermonth at the Northeast Library, 6000 Wilson Rd.,Kansas City, MO. For more information contactLois Goodman at (816) 257-2428 or Jim Clark at(816) 468-7260 or [email protected]/chapters/KansasCity/default.aspx


Northeast Florida Ataxia Support Group Meeting1:30 p.m. at Baptist Hospital South. Directions:From I -95, take exit 335 which is Old St. Augus-tine Rd. Go East. Follow the signs to the hospital.We are less than a 1/2 mile off of the interstate.Directions to the conference rooms from the mainentrance: Come in the main entrance and makea right. Go past the first hallway on the left andthe Azalea, Begonia and Camellia conferencerooms will be the next doors. All meetings will bein the Azalea and Begonia rooms. For more infor-mation contact Ann Mayo at [email protected] or (904) 471-4579. www.ataxia.org/chapters/NortheastFlorida/default.aspx

Seattle Area Ataxia Support Group MeetingWalk n’ Roll Planning Meeting – Meeting will beheld in Kirkland, WA. For more information con-tact Milly Lewendon at (425) 823-6239 or [email protected]. www.ataxia.org/chapters/Seattle/default.aspx

Saturday, February 19, 2011Orange County Ataxia Support Group MeetingMeets on the third Saturday of every other month




from 1:30 p.m. to 4 p.m. at the Orange CoastMemorial Medical Center (Breast Center Blg.,Room 1A), 9900 Talbert Ave., Fountain Valley, CA.For more information contact Daniel Navar [email protected]. www.ataxia.org/chapters/OrangeCounty/default.aspx

Twin Cities Ataxia Support Group Meeting10 a.m. every third Saturday of the month at thePresbyterian Homes of Roseville at 1910 WestCounty Road D, Roseville, MN 55112. For moreinformation contact Lenore Healey Schultz [email protected]/chapters/TwinCities/default.aspx

Saturday, March 5, 2011Central Texas Ataxia Support Group MeetingMeets the first Saturday of every other monthfrom 11 a.m. to 1:30 p.m. at the Dell Children’sMedical Center of Central TX, 4900 Mueller Blvd.,Austin, TX. We will meet in Central ConferenceRoom 4E 031 A&B (located between 4N&4C) onthe 4th floor. The medical Center’s main numberis (512) 324-0000. For more information pleasecontact Linda Crawley at (512) 635-9478 or [email protected]. www.ataxia.org/chapters/Linda/default.aspx

Sunday, March 6, 2011San Diego Ataxia Support Group Pizza Party4 p.m. – 7 p.m. at Round Table. For more infor-mation contact Earl McLaughlin at (619) 447-3753 or [email protected]. www.ataxia.org/chapters/SanDiego/default.aspx

Wednesday, March 9, 2011Willamette Valley Ataxia Support Group Meeting11:30 a.m. – 1 p.m. on the second Wednesday of

every month at Albany General Hospital, 10466th Ave. SW, Albany, OR. For more informationplease contact Ivy Stilwell at (541) 812-4162 [email protected]. www.ataxia.org/chapters/Willamette/default.aspx

Thursday, March 10, 2011Tri-State Ataxia Support Group Meeting6 p.m. – 8 p.m. at Beth Israel, Phillips Ambula-tory Care Center (PACC), usually 5th floor confer-ence rooms, 10 Union Square, New York, NY.For more information contact Denise Mitchell at(212) 844-8711 or [email protected]. www.ataxia.org/chapters/Tri-State/default.aspx

Saturday, March 12, 2011Los Angeles Area Ataxia Support Group Meeting2 p.m. – 4 p.m. Pre-AMM Meeting. We meet thesecond Saturday of every other month. For meet-ing location and general information, contactSherry McLaughlin at (626) 791-1558 or [email protected]. www.ataxia.org/chapters/LosAngeles/default.aspx


Southeast PA Ataxia Support Group Meeting10 a.m. – 11:30 a.m. on the second Saturday atMercy Suburban Hospital, Walkup Room 2nd floorfollowed by lunch at Applebee’s across the street.ATTENDEES MUST RSVP to Liz Nussear by theFriday before the meeting at (610) 272-1502 [email protected]. www.ataxia.org/chapters/SEPennsylvania/default.aspx

West Central FLAtaxia Support Group Annual PicnicNoon – 4 p.m. Location to be determined. Formore information please contact Cindy Steever-Ziegler at (239) 878-3092 or [email protected]/chapters/TampaBay/default.aspx

Thursday, March 17, 2011The 54th NAF Annual Membership MeetingMarch 17-20 at Hilton LAX, Los Angeles, �


Calendar of EventsContinued from page 51

CFC NumberThe National Ataxia Foundation’s Com-

bined Federal Campaign (CFC) number is10752.

This program provides a convenient wayto donate to the Foundation, and provides agreat benefit to those with ataxia. Pleasegive as generously as you can.


CA. www.ataxia.org/pdf/2011_AMM_Information.pdf

Saturday, March 19, 2011Twin Cities Ataxia Support Group Meeting10 a.m. every third Saturday of the month at thePresbyterian Homes of Roseville at 1910 WestCounty Road D, Roseville, MN 55112. For moreinformation contact Lenore Healey Schultz [email protected]/chapters/TwinCities/default.aspx

Sunday, March 20, 2011Chicago Area Ataxia Support Group Meeting1 p.m. at the Good Samaritan Hospital – WhiteOak Room, 3815 Highland Ave., Downers Grove,IL. For more information contact Richard Carr at(847) 253-2920 or [email protected]. www.ataxia.org/chapters/Chicago/default.aspx

Saturday, March 26, 201128th Annual NAFChesapeake Chapter Medical MeetingTheatre-Arts Auditorium, Montgomery College,51 Mannakee Street, Rockville, MD. Keynotespeaker: Dr. Henry Paulson. For more information,contact Carolyn Davis at [email protected] or(703) 759-2008. www.ataxia.org/chapters/Chesapeake/default.aspx

Detroit Area Support Group Meeting11 a.m. – 3 p.m. at the Muscular Dystrophy As-sociation, 6223 Canton Center Dr., Suite 201,Canton, MI. For more information contact TanyaTunstull at (313) 736-2827 or [email protected]. www.ataxia.org/chapters/Detroit/default.aspx

Saturday, April 9, 2011Kansas City Area Ataxia Support Group Meeting2 p.m. – 4 p.m. the second Saturday every othermonth at the Northeast Library, 6000 Wilson Rd.,Kansas City, MO. For more information contactLois Goodman at (816) 257-2428 or Jim Clark at(816) 468-7260 or [email protected]/chapters/KansasCity/default.aspx

North Texas Ataxia Support Group MeetingThe group meets the second Saturday of everymonth from 10 a.m. to noon at the Las ColinasCancer Center located at 7415 Las Colinas Blvd.,Irving TX. Parking is free and the building is hand-icap accessible. We meet in the front lobby of theLas Colinas Cancer Center; it is a one-story build-ing behind the Regions Bank. For additionalinformation please contact David Henry Jr. [email protected]. Please check the group’s

web page for updates. www.ataxia.org/chapters/NorthTexas/default.aspx

San Diego Ataxia Support Group Meeting1 p.m. – 3 p.m. at Sharp Rehabilitation Center,2999 Health Center Dr. on the East side of Hwy163 between Genessee Ave. and Mesa CollegeDr. behind Sharp Memorial Hospital. Plenty of freeparking. For more information contact EarlMcLaughlin at (619) 447-3753 or [email protected]/chapters/SanDiego/default.aspx

Wednesday, April 13, 2011Willamette Valley Ataxia Support Group Meeting11:30 a.m. – 1 p.m. on the second Wednesday ofevery month at Albany General Hospital, 10466th Ave. SW, Albany, OR. For more informationplease contact Ivy Stilwell at (541) 812-4162 [email protected]. www.ataxia.org/chapters/Willamette/default.aspx

Friday, April 15, 2011Abilities Expo – Los AngelesApril 15 -17 at Los Angeles Convention Center.www.abilitiesexpo.com


If you are interested inhelping ataxia research bydonation of tissue afterdeath, please contactDr. Arnulf Koeppenfor informationand details.

Arnulf Koeppen, MDProfessor of NeurologyVA Medical Center113 Holland Ave.Albany, NY 12208

Phone: 518.626.6377Fax:518.626.6369

E-mail: [email protected]

TISSUEDONATION

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Peter AgostiniCrystal AllsoppLinda AndersonLeroy AtwellErica BaldwinPatrick BarkerMichael BaronSharon BaggettBill BassettLani BassettDean BastionTereess BastionAngela BrownDavid BrunkeCletus BrunnertDoug BrunnertKim BrunnertBob BurmanEdward BurmanJim BurmanJ.C. CoylerEric CanterCourtney CardinalPamba CarolanRichard ChinMilan Cloud

Patricia CooperElsa CopadoBarbara CorneliusKenneth CounardElizabeth CoxRalph CullenBetty DampBill DavisCathy DavisJeannette DavisCindy DeMintTim DeMintCarter DenisonMarika DevanLinda DonaldsonRick DonnellyFrederick Donnelly, Jr.Barbara DooganOlivia DouglassAlice DrydenJoel DrydenAaron DuqueRonald EakinsShirley EvenJoseph FalconKatherine Falcon

Trinity FalkKevin FambroughLarry FederspielDoris FormanAnn FosterLisa FountainJulie FrenzPeggy FurtonRoger FurtonJohn GannonDana GarciaJesus GarciaDavid GladdenCarla GnitzcavichChristopher GoldenTanya GoldmanJoseph GolminasGolminas FamilyPenny GolminasTheresa GonzalesRobin GoyerTerrence GranahanPaschal GuercioJoy HairJack HalsteadMichael Halderman

James HankinsJim HankinsShirley HanksCindy HarperDave HarperCarolyn HarrisBarbara HartmanCarl HaukosJoan HayJesse HayesSandra HaynesLenore Healey-SchultzJeffrey HelmanMichael HelmanDavid Henry, Jr.John HessSophi HessRichard HinmanAva HirschsohnSherry HongCorky HowellSidney HowellJordan HubbardSydney HubbardHoward HunniusJohn J. Underwood

Memorials and InYour HonorThe National Ataxia Foundation is grateful to those who have made contributions in memory or in

honor of their friends and families whose names are listed below. This list reflects contributions madefrom September 2010 through October 2010. We are sorry that we cannot separate the memorial con-tributions from those made in honor of someone, as sometimes the person making the contribution doesnot let us know if the contribution is a memorial or in honor of their friend or family member.


Remembering NAF in Your WillThere have been a number of true heroes over

the years that have quietly made a significantimpact on the National Ataxia Foundation andthe ataxia families it serves. These are peoplewho have named NAF as a beneficiary in theirwill.

Most of the time the Foundation is unaware ofthe kind acts of these champions until after theyare gone, but each time we are deeply touchedand honored by their selfless commitment inhelping others.

Over the years these individuals have givenanywhere from a few thousand dollars to nearly

one million dollars. Their forethought and benev-olence has enabled the Foundation to supportpromising ataxia research and provide mean-ingful programs and services to ataxia families.It is because of these quiet heroes that manyresearch studies and programs have beenfunded. Their kindness impacts ataxia familiestoday and will be felt for years to come.

We are truly thankful for their humanitarianand compassionate acts and we will be eternallygrateful for the impact they have made in help-ing ataxia families. Their legacy lives on in thehope they have given ataxia families.

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Paul J. CirilloAlejandra JacoboJane JaffeLisa JaffeEverett JohnsonClarence JonesRandall JurasekBarbara KaffkeKeiko KainMary KimeIan KinsmanCharlie KirschnerPatricia KochanekAllen KoesterSherrie KowatchAmy LaPorteTiffany LassinJohna LeidholtCharlotte LevinMilly LewendonTony LewendonNicola LombardoJoanne LovelandDavid P. LowsleyDavid W. LowsleyScott QuinnWilliam MadridHelen MagnusonClarence MarshGeorgia MartinBrent MasserantFiona MayShay McAvoySuzanne McAvoy

Charley McLaughlinCherilyn McLaughlinEarl McLaughlin, Jr.Frederick McNeillyLinda MeierReggie MellonPaul MillerRabon MillerTiffany MillerEllen MoetschAlfredo MoranDolores MorelloLora MornWilliam MorrisonChristen MunnLisa NaaktgeborenTribute NameDaniel NavarJennifer NelsonLinda NicholsonJohn NortonJohn OberDeborah OmictinJohn OndracekIrene OphovenChad OrcuttAprille OstertLaura OwensCatherine PartillaGinger PeetGabriella PenalozaRaquel PetersJeanette PinkneyJay Pledger

Eric PogulisIkue PollakRita Powell-LobascioKeiko QuanScott QuinnRolando RamosBill RamseyRonald RandolCharity RangerDarryn RayRobert ReedSharon RegaladoSherri RichwineJanet RileySue RobertsSuzanne RobertsDavid RobinsonJames RussettLeo RyanSheryl SadKerstin SafariDonald Santa CroceKenneth SaundersJosephina

Schembre-McCabeMary SchmidtJohn SchnobrichKathleen SchnobrichClara SchultzCraig SchwartzLaura SchwartzMelissa SealyDerek SemlerCheryl Serge

Rebecca SernickKevin ShannonLori ShogrenHenry Skala, Jr.Apryl SmithWilla SnyderLeon SpearsGrant StahlRachel SuttonJoe SweeneyMike SweeneyTom SweeneyWendy SweeneyWilliam SweeneyPamela TaylorJoe ThellDarlene ThellJennifer ThigpenHomer ThomasPatricia TobiasBonnie TuckerTanya TunstullKim TyrrellJohn UnderwoodMildred

Underwood-ClementsJanet VealLisa VihnanekThea WalkerEmily WelchDavid WestrickMike WilliamsBarbara WinterFernando WuRocy WuJessica Young �

Happy New Yearfrom everyone atthe NAF Office!Julie Braun, Sue Hagen,

Mike Parent, Lori Shogren,Jan Stewart and Liz Werner


Non-ProfitOrganizationU.S. PostagePAID

Madison, SDPermit No. 32

National Ataxia Foundation2600 Fernbrook Lane, Suite119Minneapolis, MN 55447-4752(763) 553-0020

GIFT – HONOR – MEMORIALA contribution given in memory of a friend orrelative is a thoughtful and lasting tribute, asare gifts to honor your friends or family. AGift Membership is a wonderful gift to a friendor relative for special occasions like birthdays,graduations, anniversaries, and holidays. NAFwill acknowledge your gift without reference tothe amount.Simply fill out this form and mail with your checkor credit card information to the National AtaxiaFoundation.Honor/Memorial envelopes are available free ofcharge by writing or calling NAF.My contribution is:� In Memory � In Honor � Gift Membership

Name ________________________________Occasion _____________________________

Send Acknowledgment Card to:Name ________________________________Address ______________________________City/State/Zip __________________________

From:Name ________________________________Address ______________________________City/State/Zip __________________________

MEMBERSHIPYes, I want to help fight ataxia! Enclosed is mymembership donation. (Gifts in US Dollars)� Lifetime membership $500Annual memberships:� Patron membership $100-$499� Professional membership $55� Individual $35� Household $55� Addresses outside the U.S. please add $15Name ________________________________Address ______________________________City/State/Zip __________________________Phone ________________________________E-Mail ________________________________

� Yes, sign me up for NAF e-mails

Is your address correct?Are you receiving more than one issue ofGenerations? If there are any changesthat need to be made, please call NAF at (763) 553-0020 or e-mail [email protected]. Thank you!

PAYMENT INFORMATIONGifts are tax deductible under the fullest extent of the law.� Check. Please make payable to the

National Ataxia Foundation.Total Amount Enclosed $ ________________Credit Card: � Visa �MasterCard �DiscoverName on Card ________________________Card #_______________________________Exp. Date ____________________________Signature ____________________________Phone Number ________________________


Celebrating International Ataxia Awareness Day

Documents