CONNECTION - National Multiple Sclerosis Society · interest and resume to the chapter headquarters: Care of Governance Committee Chair, 1650 South Avenue, Suite 100, Rochester, New

In the SpotlightPage 7

New MS Research Approved in BuffaloPage 10

Orange Ya Glad the Word is Out?Page 4

Taking a Swing at MS Page 14

INSIDE This Issue

CONNECTIONM O V I N G T O W A R D A W O R L D F R E E O F M SSpring 2013 Upstate New York Chapter

Walk MS – A Child Can Lead Them

At just 14 years old, Jamie Huber doesn’t allow leadership to be defined by age.

She’s been participating in Walk MS since stroller, diaper and bottle days, and now – 13 years later – Jamie has asked to be named captain of her Walk MS Rochester team, Kat Walk. She’s tackling fundraising with gusto. “I set a personal goal of $300,” said Jamie, “but have since raised double that. I’m still asking for donations and hope to get even more.” Jamie started volunteering with the National MS Society Upstate New York Chapter because her mother, Kathy Huber, is living with MS. “After beginning to volunteer last summer at the chapter’s Rochester office, I saw how the money benefits people with MS,” said Jamie. “I thought if I tried raising more money on my own this year, people would be more willing to donate because I’m young, and I’m taking the time to do this.” Jamie is using tried and true ways to raise funds, as well as coming up with unique ideas on her own. WALK MS continued on page 9

Jamie Huber (top right) with her team, Kat Walk, at Walk MS 2012.

She started by simply asking nearby relatives to sponsor her walk, and then sent letters to out-of-town relatives asking for donations; some relatives she had never even met. “Ask friends and family first, because you are more comfortable with them,” suggests Jamie. “It

2 JOIN THE MOVEMENT: nationalMSsociety.org

Chapter OfficesAlbany Office421 New Karner Road, Suite 6Albany, NY 12205-3838

Binghamton Office457 State StreetBinghamton, NY 13901-2399

Buffalo Office4245 Union Road, Suite 108Buffalo, NY 14225

Rochester Office1650 South Avenue, Suite 100Rochester, NY 14620-3901

Syracuse OfficeP.O. Box 2173Syracuse, NY 13220

All offices can be reached by calling 1-800-344-4867 (1-800-FIGHT-MS)

Executive Management TeamStephanie Kunes-Mincer, LMSW

President and CEOBarbara J. Bennett, CPA - Vice President, Finance

Valerie King Hoak - Vice President, Chapter Resource Development

Shari Mazzella - Director, Programs & Services

2013 Chapter Board MembersOfficersThomas D. Muller .............................................. ChairChristine Sisto Mertes .............................Vice ChairJames J. Smith ............................................SecretaryCharles T. Cleary .......................................... Treasurer

Directors Kathy Birk, MD Mark BoucherAnthony CortinaKeith Edwards, MDNancy Tantillo HoltbyBryan Kenny, CPAJennifer McKenzie

Clinics/Health CentersVisit our website for a list of National MS Society affiliated clinics.

Upstate New York ChapterMSupstateny.orgnationalMSsociety.orgemail: [email protected]

Richard J. Mengel, CPASteven V. Modica, Esq.Mitch Pawluk, Esq.Susan RadzyminskiPamela Salisbury, MSN, NP-CJulie ShortKaren L. Waldron

TOLL FREE NUMBER 1 800 344 4867 3

Chapter NEWS

More than a quarter million people across the country will soon be gathering at various locations to participate in the National MS Society’s largest fundraising and awareness event: Walk MS. The Upstate New York Chapter boasts 19 walk sites across the state in May, with more than 10,000

walkers, truly defining this event as the rallying point for everyone affected by multiple sclerosis. This year, I’ve decided to give our Walk MS participants a little homework; nothing difficult, but definitely important. While you are walking, I want you to think about how the money you raised for this event has helped move research forward. Think about the progress that has been made. Think about the close to $3 million that has been awarded to researchers this year alone, right here in our chapter territory – researchers who are working to stop MS disease activity and progression, restore lost function, and one day end MS forever. Dr. Steven Goldman and Dr. Su Wang, and their team from the University of Rochester Medical Center, took mice with a disorder similar to MS that prevents them from growing myelin (the insulating material surrounding nerve fibers that is also dam-aged in MS), and transplanted stem cells from hu-man skin into the brains of those mice. They found that the transplanted cells developed into myelin, producing cells that formed new myelin quickly and efficiently. As exciting as this is, these are early findings and further research is necessary before this procedure

Letter from the PresidentStephanie Kunes-Mincer, LMSW

can be tested in people with MS. Dr. Murali Ramanathan, with The Research Foundation of SUNY Buffalo, is investigating the role of cholesterol and related substances to guide diet and lifestyle choices that will improve disease outcomes in people with MS. Think about this as you walk. And this: Dr. Ralph Benedict, of Buffalo Gen-eral Medical Center, is investigating changes in the brain that may lead to personality and behavior disorders in MS, and the impact of those disorders on disease course and quality of life. Dr. Matthew Bellizzi, from the University of Rochester Medical Center, is identifying processes that contribute to the loss of nerve function in MS, and seeking ways to protect the nervous system from damage. Think about how the dollars you are raising for Walk MS helped make this research pos-sible. Walk and think about how there are more po-tential MS therapies in various stages of develop-ment today than at any other time in history. In 2013 alone, the Society is investing $47.6 million to support more than 350 new and ongoing studies across the country to move us closer to a world free of MS. While you are walking to support finding a cure for MS, I want each of you to look around and celebrate not only what you’ve done individually, but what you have all done collectively to propel research forward, as we continue the work of so many brilliant minds across the country. Finally, I want each of you to have the best time ever! Only then will your homework be marked as complete. Thank you for participating!

Stephanie Kunes-Mincer

JOIN THE MOVEMENT: nationalMSsociety.org 4

Chapter NEWSMeet the Board Member

Karen Waldron is the Board Chair-Elect. Karen joined

the MS movement when she was diagnosed with the dis-ease in 1997. That year, she started Walk MS team, Wal-dron’s Walkers, and raised $1,000. Since then, Karen has

been active with the Society, attending programs, volunteering, raising funds and sitting on the Board of Directors. Each year, she grows her Walk MS team in participants and funds and, to date, has raised close to $100,000.

Karen Waldron

Annual Meeting Slated for October – Now Seeking Board Nominations

The National MS Society Upstate New York Chapter will hold its annual meeting in Syra-

cuse on October 17. The meeting will elect board members for fiscal year 2014 and report results for fiscal year 2013. If you would like to submit a can-didate for consideration for service, send a letter of interest and resume to the chapter headquarters: Care of Governance Committee Chair, 1650 South Avenue, Suite 100, Rochester, New York, 14620.

Orange Ya Glad that Together, We Raised Awareness?

Orange is the official color representing the National Multiple Sclerosis Society, and in

recognition of MS Awareness Week (March 11-17), the Upstate New York Chapter embarked on an initiative to get buildings and bridges lit orange across the 50 Upstate counties served by the chapter. Structures going orange for MS aware-ness during the week included historic landmarks from the Seventh Natural Wonder of the World, Niagara Falls, and the international bridge from Canada to the U.S., the Peace Bridge, to lesser-known buildings like Hawkins Hall on the SUNY Plattsburgh campus. During MS Awareness Week, the chapter of-fered programs to the public to help them learn more about MS and to identify sources of support for those who are in the process of being diag-nosed or are living with MS. MS Awareness Week’s main focus is to spread awareness and encourage people to Join the Movement® against MS. Here are a few of our chapter’s highlights:

A SUNY Plattsburgh student got Hawkins Hall on campus lit up orange.

5TOLL FREE NUMBER 1 800 344 4867

Chapter NEWS

The Peace Bridge goes orange for MS awareness.

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Upstate New York Chapter staff and volunteers got numerous structures, including Electric Tower in Buffalo (above), lit up orange in recognition of MS Awareness Week.

On the Move Luncheon emcee, Norma Holland, 13WHAM/CW, honoree Kerrie Giesen, and Upstate New York Chapter President and CEO, Stephanie Kunes-Mincer.

Honoree, Sandra Quiñones, enjoying hors d’oeuvres before the On the Move awards ceremony.

The 3rd Annual On the Move Luncheon on March 15 in Pittsford drew a crowd of nearly 200 people and generated more than $20,000 in funds for the Upstate New York Chapter.

Luncheon guests had the opportunity to win more than a dozen fabulous raffle prizes, with the grand prize of a 14k yellow gold pendant with rubies and diamonds donated by Ultra Diamonds.


Chapter NEWS

Stephanie Hoffert, of West Leyden (seated), is the winner of our Scooter Giveaway contest (pictured here with Upstate New York

Chapter President and CEO, Stephanie Kunes-Mincer, Hoffert’s husband, Francis, and Miguel Millan, Jr., owner of 101 Mobility, the

company which donated the Golden Buzzaround Lite Scooter).

Don, Julie, and Jenny were among panelists who shared their experiences of living with MS as part of The Many Faces of MS in Latham on March 14. The program, featuring Dr. James P. Wymer, from Albany Medical Center, drew more than 100 people.

Phil Geyer, Ron Stefanski, and Greg Harvey of the Bike MS Southtowns Shuffle Task Force inside Walden Galleria Mall during

MS Awareness Week, pedaling to promote our upcoming rides, collect donations and spread the word about this debilitating

disease that needs to be cured.

Steve Marsh and Mike Halstead of the Bike MS Hudson River Ramble Task Force pedaling away inside Colonie Center Mall.

Members of Walk MS Corning “Team Travelers Elmira” raise awareness

and funds for the chapter during MS Awareness Week, and try to recruit

members for their team.

Trisha Sarnowski (far right) talks about living with MS at a press conference at

Rochester City Hall during which Mayor Thomas Richards proclaimed it

MS Awareness Week.


VOLUNTEERINGAll Revolutions Start with Volunteers

April is Volunteer Appreciation Month, and we would like to thank all of our dedicated

volunteers who contribute their most valuable resources – time and energy – to the movement against MS. Volunteers are the force of this move-ment that will one day end MS forever. Within our volunteer force, we have graphic designers, law-yers, physicians, accountants, mothers, fathers, managers, laborers, and more. What do they have in common? They are volunteers who are passion-ate about seeing an end to MS. Nationally-renown volunteerism consultant, Susan Ellis, reminds us, “Paul Revere earned his living as a silversmith, but what do we remember him for? His volunteer work. All activism is volunteering in that it’s done above and beyond earning a living and deals with what people really care passionately about. All revolutions start with volunteers.” Volunteers in the MS movement are truly appreciated for all their contributions toward creating a world free of MS. Thank you!

Volunteer Spotlight

When Maria Torres sees a need, she fills it. After being diagnosed with multiple

sclerosis, Maria immediately went to work on Bufflao’s West Side, volunteering her time as an advocate for those affected by MS, and starting our chapter’s first bi-lingual support group. This is especially significant in inner-city Buffalo, where it can be difficult to find transportation to education programs in sub-urban areas. Maria is also an MS Ambassador, providing information about MS at events and helping people experience what it’s like to live with MS by having them use “Try on MS” kits. Maria is the captain of Walk MS team, CUREiously Walkers. In 2012, the 98-member team raised $1,646 in donations for the chap-ter. Maria’s passion for serving people and her community, and her commitment to educat-ing people with MS, are prime examples of a volunteer dedicated to making a difference in her community.

Maria Torres with Maria Batt, Upstate New York Chapter Senior Campaign Manager.

Get the 411 on Volunteering

Do you receive the Volunteer E-News? This bi-monthly emailed newsletter just for

volunteers features new and upcoming oppor-tunities to help you get more involved in the mission to create a world free of MS. To get on the e-newsletter mailing list, sign up online at VolunteerMSupstateny.org.


Chapter PROGRAMS

A DIY Fundraising Drive Anyone Can Do

Are you interested in DIY fundraising, but don’t have time to organize a full-scale

event? We have a solution: pin-ups. Have you ever been in the check-out line of a supermar-ket and the cashier asks if you want to give one dollar to a charity? Those are pin-ups, and we have the same program. The chapter will send you pinups (postcards which promote DIY Fun-draising for the National MS Society), and you sell them yourself, or collaborate with your lo-

VOLUNTEERING

cal store to have store employees sell them. The Upstate New York Chapter gets 100% of the pro-ceeds from pin-ups. It goes toward your fund-raising account and dramatically increases your donor network. If you would like us to send you a stack of DIY pin-ups, contact Ashley at 1-800-344-4867 or email [email protected]. We also have pin-ups to support Bike MS and Walk MS, and you can request some by emailing [email protected].

New Program Teaches Positive Thinking

Each of us envisions a way we want our life to go, but for those with multiple sclerosis, that

idea can change due to the challenges of living with a chronic, unpredictable and lifelong dis-ease. To address these challenges, the Society has developed a new, in-person program for people with MS, their support partners and fam-ily members. “Everyday Matters: Living Your Best Life with MS” teaches people how to incorporate principles of positive psychology into their lives. The Upstate New York Chapter has been award-ed grant money to pilot this five-week wellness program in Buffalo and Rochester later in the year. Participants will receive program materials, including Shawn Achor’s book, The Happiness Advantage. To learn more, contact Dee Mascari in Rochester, or Megan Vaughan in Buffalo, at 1-800-344-4867 (press 2).

Peer-to-Peer Helpline Expands

A telephone helpline that was exclusively for people with MS is being expanded to in-

clude similar peer support for those who are a friend, family member or caregiver to someone with MS. If someone living with MS calls the MSFriends helpline (1-866-MS FRIENDS) seek-ing support to meet the challenges MS may bring, the phone is answered by someone else who has MS and has “been there”. Now, with CareCall, a friend, family member or caregiver to someone with MS can call the same number looking for support and request a call back from someone else who does not have MS, but has a connection to it. CareCall is looking for volun-teers to answer the phones. They will need to complete a rigorous screening and training pro-gram. For information, contact Monica Aden at [email protected] or 303-698-6100, ext. 15169.


Chapter PROGRAMSApply Now for MS Service Day

Interested in helping people with MS remain independent and safe in their homes? On MS

Service Day, October 5, roll up your sleeves and get to work doing chores, light household re-pairs and yard work at the home of someone who may not be able to finish those tasks be-cause of the effects of MS. We’re accepting ap-plications now through June 26 for households that wish to be considered for MS Service Day. You can also apply to be a volunteer. We’re looking for sponsors, too, to donate funds or items such as tools or meals to feed our volun-teers. For more information, visit our website, MSupstateny.org, or call 1-800-344-4867.

DID YOUKNOW?Almost every National MS Society program in the Northeast is available to anyone affected by MS. To learn about programs available to you, visit www.MSupstateny.org and select “Events & Programs in the Northeast” from the left navigation menu.

will give you more confidence, making it easier to ask other people.” Raising awareness is an important component to Jamie, whose letters included a flyer about MS and what the money will go toward, and a personal, eye-catching opening line of, “As you know, my mother has MS…” “It’s important for people to know that MS is a serious disease with symptoms that can prevent a person from having a normal life,” said Jamie. “If they know someone with MS they can better understand how hard it is.” During MS Awareness Week, Jamie delivered flyers about MS throughout her neighborhood, along with a note asking neighbors to call her if they wanted her to pick up their cans and bottles to donate to her fundraising.

“Every dollar counts!” said Jamie. “Donations help so many with MS and their families with research, programs and services.” Jamie is planning to run a benefit lemonade stand at her upcoming community yard sale, and plans to sell other items, including Society merchandise. She’s also approaching administrators at her school to try to involve classmates in a fundraiser, which may include raffling off a basket of goodies donated by local businesses. And if folks want to take their involvement beyond donating to Walk MS, Jamie suggests they join her on May 5 and raise money themselves – or walk and make a self-pledge. “It’s so much fun to me to get out there and walk with so many others,” she said. “Everyone has a good time, and it feels like you’re part of a community. It’s a great experience, and you’ll feel good helping others.” To make a pledge to a Walk MS team or to join the walk, visit MSupstateny.org. You can find a complete list of Upstate New York Walk MS locations and dates on page 18.

WALK MS continued from page 1


Chapter PROGRAMSMeeting the Financial Challenges of MS

“Money Matters with MS: Present and Fu-ture Issues,” in Geneseo on May 6, will

offer strategies for meeting the financial chal-lenges that often accompany life with MS, in-cluding information on managing credit cards, living trusts, employee benefits, estate plan-ning, and more. The program, at the United Methodist Church from 6:00 p.m. to 8:00 p.m., will feature Special Care Planner, Bruce Super-nault, ChFC, CCPS, and Bruce Goldstein, J.D. To register, call 1-800-344-4867 (press 1), or go online at MSupstateny.org and click on the Pro-gram and Events Calendar.

New Support Groups Lewiston: A new support group in Lewiston will meet on the first Thursday of each month at 6:30 p.m. Join us in the Education Center (room 249) at Mount St. Mary’s Hospital & Health Center on 5300 Military Road. If you have any questions, contact Megan Vaughan at 716-634-2573 x70502 or [email protected]. Cheektowaga: Are you a care partner in Erie County looking to join a support group? We’re hosting a Care Partner Support Group at 7:00 p.m. on the fourth Monday of each month, at the National MS Society office on 4252 Union Road (suite 100). For more information, contact Me-gan Vaughan at 716-634-2573 x70502 or [email protected].

RESEARCHFDA Approves Another Oral Medication for Relapsing MS

The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl

fumarate, Biogen Idec – formerly “BG-12”) as a first-line disease-modifying therapy for peo-ple with relapsing forms of MS. This makes the third oral therapy approved for relapsing MS, and the tenth disease-modifying treatment available in the U.S. For more information, visit MSupstateny.org, and click on “National News”.

Buffalo Researcher Studies Diet as it Impacts the Progression of MS

The National MS Society has awarded a three-year,

$704,784 grant to Murali Ra-manathan, Ph.D., with The Research Foundation of SUNY Buffalo, to study the role of cholesterol and related sub-stances to guide diet and life-style choices that will improve disease outcomes in people with multiple scle-rosis. The results of Dr. Ramanathan’s study, titled “Lipoprotein and Lipid Metabolism in MS Disease Progression”, may allow better management of MS and could be used to guide therapies, diet, exer-cise, and other lifestyle choices to reduce MS dis-

continued on next page

Murali Ramanathan, Ph.D.,


RESEARCHease progression. Approximately 25% of the body’s cholesterol is present in the brain, and most of this cholesterol is present in myelin, the substance that protects the nerve fibers in the brain and that is one of the tar-gets of destruction in MS. Cholesterol and related molecules are also important for immune respons-es. Dr. Ramanathan and colleagues are taking ad-vantage of large-scale, ongoing clinical trials to look at cholesterol and related molecules in people with MS. They are looking for a relationship between amounts of cholesterol and various cholesterol-related molecules found in blood and MS disease activity, disability progression, and brain integrity, which they are measuring with MRI scans and other techniques.

Participate in Research Studies

Dr. Ramanathan’s study is one of 51 new MS re-search projects the Society recently launched, with multiyear commitments of more than $25 million. This financial commitment is the latest in the So-ciety’s relentless research effort, investing an esti-mated $44 million in 2012 alone to support more than 350 new and ongoing studies to move closer to a world free of MS. Contributions to the Society’s NOW (No Opportunity Wasted) campaign are cru-cial to fueling these research initiatives. If you would like to donate to the NOW campaign, visit our web-site, MSupstateny.org, and click on the green box on the lower right side of the page. Dr. Ramanathan will be a featured speaker at “MS Research: The Progress, The Promise” in Buf-falo on April 23.

Albany: The MS Center of Northeastern New York, in Latham, under the direction of Keith Ed-wards, M.D., is starting a new treatment trial for disease modification in patients with secondary-progressive MS. The study will have participants taking siponimod (BAF312), or a placebo. The trial is sponsored by Novartis, the maker of BAF312, a daily oral medication that is in a class similar to Gilenya. To find out more, call Judy at 518-785-1000 and ask about the BAF or secondary-progressive MS treat-ment trial. The MS Center in Latham is also collaborating with UT Southwestern Medical Center at Dallas to develop a large scale sample and data repository to help researchers identify the causes of several demyelinating diseases such as MS. Study partici-pants will be asked to provide blood samples and background information that will be kept confiden-tial. For information on participating, call Vineetha at 518-785-1000.

Buffalo: DENT Neurologic Institute in Amherst is evaluating a new, investigational drug that may help reduce MS relapses. Qualified volunteers be-tween ages of 18-65 will receive study-related medical evaluations and the study drug at no cost, and be compensated for time and travel. The insti-tute is conducting another study to evaluate differ-ent medications that treat relapsing-remitting MS. If you are between the ages of 18-65, have been diagnosed with RRMS, or have five years or less of total lifetime exposure to one class of Disease Modifying Therapy (DMT), you may qualify to par-ticipate. For information on either of these studies, contact DENT Neurologic Institute at 716-250-2038 or 716-819-4117. The Pediatric MS and Demyelinating Disorders Center at Women and Children’s Hospital of Buffa-lo is currently recruiting healthy, typically develop-ing children ages 3 to 19 to take part in a research



RESEARCHstudy. Participants will be phone screened prior to the first visit and will be compensated. The study includes a questionnaire for participants, who will also have a blood sample drawn. This study is also looking for Pediatric MS patients ages 3 to 18 who will not be compensated, but will be eligible for a full clinic visit with an MS specialist. For more infor-mation, call Mary Karpinski at 716-859-1792. Dr. Ralph Benedict, of the University at Buffalo, is conducting an online longitudinal survey of indi-viduals who have MS and are currently working. The goal of this research is to help patients identify pos-sible vulnerabilities that may create employment problems. Participants will be asked about their work activities and problems they have encoun-tered. The entire survey will take less than 15 min-utes. You will be asked to complete the survey every few months so that any changes in your employ-ment status can be confidentially identified. There is no direct compensation for this study. To take the survey, go to Thejni.org and click Online Research Survey, and then Vocational Accommodations and MS. If you have questions, or difficulty accessing the survey, contact [email protected]. Rochester: The Rochester MS Center is recruit-ing subjects for a study that will look at whether vitamin D is effective in reducing relapses and new MRI lesions in people with MS. Previous studies of vitamin D levels in people with MS show that those with lower vitamin D levels are more likely to have MS attacks and new MS lesions develop on brain MRI, but it is not known if giving vitamin D supple-ments reduces the amount of MS activity. Study participants will receive high-dose or low-dose vi-tamin D for two years. To be considered, you need to be newly starting Copaxone. All participants will be given glatiramer acetate (Copaxone) for free during the study. To find out if you are eligible to

participate, call Cynthia Irish, RN, MSCN, CCRC, at 585-275-6120. The Rochester MS Center is currently recruiting subjects for a study that will assess the safety of a new medication called VX15/2503 in patients with MS. The purpose of the study is to find the high-est safe dose of VX15/2503, which will be given by intravenous infusion. In laboratory experiments, VX15/2503 interfered with a protein called SEM4D, which is believed to play a role in MS progression. The study is being sponsored by the pharmaceuti-cal company Vaccinex, Inc., and is being conduct-ed by Dr. Lawrence Samkoff from the University of Rochester. Participation will require about 10-16 weeks, including one overnight stay the day of the infusion. Subjects need to be between the ages of 18 and 60 and willing to undergo MRI exams. They will receive a stipend to offset travel expenses. For more information, call the coordinator, Cynthia Irish, at 585-275-6120. Novartis is sponsoring a clinical research study at the University of Rochester MS Center to com-pare two doses of fingolimod with glatiramer ac-etate, and to evaluate the effectiveness and safety of fingolimod for people with relapsing-remitting MS. Participants will be randomly assigned one of three treatments, two with fingolimod (a daily pill), and one with glatiramer (a daily injection). Please contact Eileen Scheid, RN, MSN at 585-275-6673, for more information. If you have MS and are suffering from chronic pain, you may qualify for a research study. Partici-pants must suffer from nerve (neuropathic) pain (e.g. burning, pricking, numbness) and be between the ages of 18-85. Qualified volunteers may receive study related medical evaluations and the study drug at no cost. To learn more, call Eileen Scheid RN, at the University of Rochester, at (585) 275 6673.


ADVOCACYMS Advocates Weigh in at the Capital District and on Capitol Hill

More than a dozen state lawmakers heard from MS advocates and Upstate New York Chapter

staff on State Activism Day on February 27 in Alba-ny. Members of the New York State Legislative MS Alliance, including Senator Mark Grisanti and As-sembly members Mark Johns, Donna Lupardo, Ste-ven McLaughlin, and Crystal Peoples-Stokes, were among legislators who exchanged ideas with vol-unteers, talked about pressing state budget issues, and listened as volunteers shared their stories of living with MS. Volunteers hoped lawmakers would walk away with a better understanding of how leg-islation they craft and pass affects those with MS. For three days in March, hundreds of MS advo-cates and activists converged in Arlington, Virginia, at the Society’s Public Policy Conference, sharing

ideas, exchanging good wish-es, and generating enthusiasm for the MS movement. Among them, Albany-area members of the Government Relations Committee (GRC), Frank Ridzi and Randy Stein, learned learn ways to enhance advocacy and connected with lawmakers on Capitol Hill. Up-state New York Chapter President and CEO, Stepha-nie Mincer, Advocacy and Program Manager, Aaron Ward, and Senior Programs and Services Manager, Lori Rhodes, were there, too, sharing ideas with vol-unteers and staff from other chapters. The chapter is looking for more volunteers to join its GRCs in Albany, Rochester, and Buffalo. There are other ways to get involved with advocacy, including meeting with lawmakers, writing letters, making phone calls, or staffing an advocacy booth at Walk MS or Bike MS. To get started, contact Ad-vocacy and Program Manager, Aaron Ward, at 518-464-0910 or [email protected].

[L-R] Upstate New York Chapter board member, Mitch Pawluk, chapter Director of Programs and Services, Shari Mazzella, Senator Michael Nozzolio, and GRC members Doug Kaleta and Frank Ridzi.

[L to R] GRC member, Doug Kaleta, Assemblywoman Crystal Peoples-Stokes (member of the NYS MS Legislative Alliance), GRC member, Frank Ridzi, and chapter Advocacy and Program Manager, Aaron Ward.

[L-R] Chapter Advocacy Manager, Aaron Ward, and Senior Programs and Services Manager, Lori Rhodes, with staff from other chapters.

Albany-area GRC member, Randy Stein.

Approximately 300 MS activists attended the Public Policy Conference on March 4-6.


Couple Takes a Swing at MS by Creating Golfer’s Dream Auction

Hitting the links with Golf Channel per-sonality and former PGA player, Charlie

Rymer, sounds like a flight of fancy to most golf enthusiasts, but a restaurateur in Rhine-beck is making it someone’s dream come true. Tony Balassone, along with his wife, Les-lie, owners of the Calico Restaurant and Patis-serie, latched onto the concept of DIY fund-raising in memory of a close relative who had lived with multiple sclerosis. They’ve been long-time supporters of the National MS So-ciety Upstate New York Chapter, holding vari-ous successful fundraisers at their restaurant, but decided that finding a cure for MS com-mands a bigger fundraising goal – $45,000 to start. “We wanted to fundraise in a way that was also fun for us,” said Balassone. “As a couple, we love to golf, so we started brainstorming ways we could incorporate golfing, but in a non-traditional way.” Tony made more than a few phone calls, and his persistence paid off with a hole in one. He was able to secure donations from golf pros and course managers to put to-gether a golfer’s dream package for an eBay auction that will run the entire month of July. The auction prize will go to the three top bidders who will enjoy a group lesson on September 23 with Fred Griffin, a top 100 golf instructor, followed by a round of golf at Grand Cypress Golf Resort in Orlando, Florida.

The next day, the auction winners will play 18 holes of golf with Rymer on Arnold Palmer’s championship course at Orlando’s Bay Hill Resort and Lodge. The couple got another ace when they dreamt up the idea of a Golf Marathon. In the fall, Tony will be at the Trump National Golf Course Hudson Valley in Stormville, playing golf starting at dawn and ending when he can no longer swing. “I’m most excited about this part of our fundraising plan because I see it as a personal challenge,” said Tony. He’ll be collecting pledges for each mile walked, for each birdie, and flat donations. “We don’t just want to raise this money for the National MS Society, we need to do it,” said Tony. “My uncle was living with MS for as far back as I could remember, and I have seen the devastating effects of this disease first hand. The time for finding a cure for MS

DEVELOPMENT

The Millbrook Vinyards custom

wine label featuring Tony

Balassone.



DEVELOPMENT

There is still time to be a part of the crowd! Register for Walk MS today.

May 5: 16 locations near you

May 4: Buffalo

May 19: Mohawk Valley and Northern Chautauqua

www.walkMSupstateny.org *a complete list of Walk MS sites can be found at our website

1-800-344-4867 (1-800-FIGHT MS) (press 2)



May 4: Buffalo



1-800-344-4867 (1-800-FIGHT MS) (press 2)



May 4: Buffalo



1-800-344-4867 (1-800-FIGHT MS) (press 2)



May 4: Buffalo



1-800-344-4867 (1-800-FIGHT MS) (press 2)



May 4: Buffalo



1-800-344-4867 (1-800-FIGHT MS) (press 2)



May 4: Buffalo



1-800-344-4867 (1-800-FIGHT MS) (press 2)



May 4: Buffalo



1-800-344-4867 (1-800-FIGHT MS) (press 2)



May 4: Buffalo



1-800-344-4867 (1-800-FIGHT MS) (press 2)



May 4: Buffalo



1-800-344-4867 (1-800-FIGHT MS) (press 2)

is long past due. So, Father Keith Mahoney – this one’s for you.” Tony and Leslie plan to continue their reg-ular fundraising, too, at the restaurant. They partnered with local winery, Millbrook Vine-yards, to produce a special wine label, and $2 of each bottle sold will be donated to the Up-state New York Chapter. Those interested in bidding on the golf-er’s dream package will be able to find a di-rect link to the eBay auction from the chap-ter’s website, MSupstateny.org, during July. Now that’s a “sweet spot”!

Interested in Volunteering for Bike MS?

There are a number of opportunities for volunteers during the rides, including

registration, supply truck driving, supply team, support vehicle drivers and rest stop volunteers. If you’re joining us on the ride, consider inviting your family and friends to volunteer. You can volunteer by registering online at BikeMSupstateny.org, or by calling Ashley Greenman, Volunteer Coordinator, at 1-800-344-4867 (press 2).


DEVELOPMENTNot Just Spinning His Wheels

Jim Andolina is one serious cyclist when it comes to pedaling his way through the

MS movement. For almost two decades, he has participated in Bike MS, the premier cycling series in the nation – a fundraising event for the National MS Society. His family has planned a baby shower, a bridal shower, two weddings, and countless personal activi-ties around this annual ride. Three years ago, Andolina had a major heart attack. Before he left the hospital, he assured everyone that he would still be riding in Bike MS the following August – a promise that he kept. “In August of 2010,” said Andolina, “I found myself at Bike MS Finger Lakes Challenge sur-rounded by friends, family, and all the selfless people that make this event special. “ Andolina got involved with the Society soon after one of his closest friends was di-agnosed with multiple sclerosis. In 2002, An-dolina formed a team that he named, The Vintage Raiders. His wife and children joined the team, and then in 2009, the team added both of Andolina’s grandchildren, who were just 7 and 11 years old. The Vintage Raiders have been among the chapter’s top three Bike MS fundraising teams for several years. Andolina’s fundraising and training is already underway as he prepares for the next ride at Keuka Park on July 20 and 21. Andolina was honored in March as a Pro-fessional On the Move at the chapter’s annual On the Move Luncheon in Pittsford.

Bike MS: Get ready for the ride of your life.

Bike MS: Finger Lakes Challenge – July 20-21, Keuka ParkBike MS: Southtowns Shuffle – August 10, Orchard ParkBike MS: Hudson River Ramble –

September 21, Schodack

Register today at BikeMSupstateny.org!

[L-R] Jim’s daughter, Jeannine Trippodo, his granddaughter, Zinnia Vella, his wife, Jeanne Andolina, and Jim.


DEVELOPMENTMoving Toward a World Free of MS Fundraising


REGISTER TODAY!MSchallengewalkcapecod.org800.344.4867

2 DAYS.* 50 KILOMETERS

SEPTEMBER 7-8, 2013(Three-Day Option, Fri. - Sun.)

REGISTER TODAY & BEGIN FUNDRAISING

As soon as you register, you’ll have access to our online fundraising tools, making fundraising easier and more convenient than ever! A minimum fundraising goal of $1,500 is required, but we’ll be with you every step of the way.

TWO REGISTRATION OPTIONS*In celebration of the Rosh Hashanah holiday, Challenge Walk MS 2013 will be two days and 50 kilometers. A three-day option is available, with a Friday morning start. Accept the Challenge:

1. Walk 2 days and 50 kilometers on September 7-8, 2013

2. Walk 3 days and 50 miles on September 6-8, 2013

Register to walk or volunteer as ...

• An individual participant

• A member of an existing team

• A team captain (set up a team)

TEAM UP FOR MORE FUN

Forming a Challenge Walk MS team is an opportunity to share a great experience with friends, family members, or co-workers — all while moving us closer to a world free of MS.

ROUTE Friday: 20 miles from Hyannis to Brewster, via Yarmouth.

Day 1: 20 miles through Orleans and Eastham, then back to Brewster

Day 2: 10 miles to Dennis and return to Hyannis

ACCEPT THE CHALLENGE!A WORLD FREE OF MULTIPLE SCLEROSIS

NATIONAL MULTIPLE SCLEROSIS SOCIETY GREATER NEW ENGLAND CHAPTER

Once in a while, a challenge calls that you simply must answer. Challenge Walk MS is the perfect way to embrace a personal challenge of spirit and strength, while making an important difference in the lives of people living with MS.

We unite together during the two-day, 50-kilometer Challenge Walk MS on Cape Cod to keep us moving toward a cure.


We have a date and location for

the chapter’s annual Champions On the Move Luncheon in Buf-falo: September 13 at the Buffalo Marriott on Millersport Highway. Now it’s time to scout out all of those individuals and groups in the Greater Buffalo area who have joined the MS movement – through philanthropy, activism or volunteerism – to be honored at this unique awards ceremony and networking luncheon. The chapter is seeking nomi-nations in the following categories: Professionals On the Move, Young People On the Move, Inspirational People On the Move, Groups on the Move and Vol-unteers On the Move. Honorees do not have to have multiple sclerosis to be considered; they just need

DEVELOPMENT

2012 Champions On the Move Luncheon

Do You Know a Western New York Champion in the MS Movement?

Whether you’re an avid angler or a weekend

one, join us at the chapter’s first Walleye Tournament fundraiser on June 20 at the Small Boat Harbor in Buffalo. Groups of three will board professional captained charter boats and navi-gate beautiful Lake Erie to find walleye “hot spots”. Following the tournament, anglers will enjoy a ca-tered dinner, raffles, and an awards presentation to recognize the day’s biggest catch and top anglers. Space is limited, so visit MSupstateny.org to reserve your seat. If you are interested in being a part of this year’s task force, contact Maria Batt at 716-634-2573, ext. 70501, or [email protected].

Fishing for a Cure

May 4Buffalo – Inner Harbor

May 5Albany – The Crossings of Colonie, LoudonvilleBatavia – Dwyer Stadium, 299 Bank StreetBinghamton – Otsiningo ParkCanandaigua – The Inn on the LakeCorning/Elmira/Bath – Nasser Civic Center Plaza, CorningGreece – Olympia High School, 1139 Maiden Lane, Roch.Jamestown – Allen Park Pavilion, West Virginia Blvd.Lockport – Lockport Locks and Erie Canal Cruises landingOneonta – Neahwa Park

Plattsburgh – US Oval ParkPoughkeepsie – Culinary Institute of America, Hyde Park Rochester – Genesee Valley Park, 133 Elmwood Ave.Saratoga – Saratoga Casino and Raceway, Saratoga SpringsSyracuse – Onondaga Lake Park, 106 Lake Drive, LiverpoolWatertown – Jefferson Community CollegeWellsville – Alfred State College, South Brooklyn Ave.

May 19Mohawk Valley – Masonic Care Community, 2150 Bleecker

Street, Utica Northern Chautauqua – Russell Joy Park, Milt Lupean

Drive, Fredonia

to be making a difference in the MS movement. Last year’s luncheon drew a crowd of more than 200 and raised more than $37,000 for MS research, pro-grams and services. Jacquie Walker, WIVB News 4, will again emcee the luncheon. To nominate some-one, contact Maria Batt at [email protected] or 716-634-2573, ext. 70501, or visit MSupstateny.org.

Walk MS Dates and LocationsJoin us at Walk MS and register today by visiting MSupstateny.org, or call 1-800-344-4867 (press 2), or email [email protected].


DEVELOPMENTFORE (MS)!

Get to the driving range and practice your swing, because registration for Buffalo Golf

Fore MS is open. Golfers will tee off this year at the Transit Valley Country Club in Amherst on June 10. The tournament will host friendly competition (scram-ble format), exciting auction items, and networking with Buffalo’s business elite. Make plans to join us on the greens and take a swing at MS. To register, visit MSupstateny.org. For information on becoming a corporate part-ner, donating an auction item, or registering your foursome, email [email protected].

A beautiful setting, great food, and the chance to walk away with a one-of-a-kind piece of

art – what could possibly make this even better? How about knowing you’re supporting a great cause? You will get all of that by joining our Party in the Garden in Sodus Point on Saturday, June 29. Participate in our art lottery and go home with a unique piece of art valued at $250 or more. Pro-ceeds from the evening will benefit the Upstate New York Chapter. This first-of-its kind fundraiser by our chapter will be at the beautiful home and gardens of Tom and Martha Lightfoot on 8387 Bay Street, from 6:30 p.m. to 9 p.m. Our emcee will be John DiPasquale, News 8 Now (WROC-TV) meteorologist. Reserve your seat today by visiting MSupstateny.org.

Party in the Garden

REGISTER NOW: MuckFestMS.org OR CALL: 1.800.344.4867

APRIL 27, 2013: FORT dEvENS - dEvENS, MAJUNE 15, 2013: ESSEx COUNTy SOUTh MOUNTAIN RESERvATION - WEST ORANGE, NJ

National Multiple Sclerosis SocietyUpstate New York Chapter

National Multiple Sclerosis Society1650 South Avenue, Suite 100Rochester, NY 14620-3901

CHANGE SERVICE REQUESTED

FREE MATTER FOR THE

BLIND AND HANDICAPPED

Upcoming Chapter Events Location DateMS Research: The Progress, The Promise Rochester April 18

MS Research: The Progress, The Promise Amherst April 23

MuckFest MS Boston, MA April 27

Walk MS Buffalo May 4

Walk MS 16 Upstate NY locations May 5

Money Matters with MS Geneseo May 6

MS, Sex and Intimacy Teleconference May 9

Walk MS Mohawk Valley; N. Chautauqua May 19

World MS Day Worldwide May 29

Buffalo Golf Fore MS East Amherst June 10

Improving Independence in Progressive MS Teleconference June 12

Live Fully, Live Well Lockport June 15

MuckFest MS Essex County, NJ June 15

Walleye Fishing Tournament Buffalo June 20

Party in the Garden Sodus June 29

Bike MS: Finger Lakes Challenge Keuka Park July 20 – 21

Bike MS: Southtowns Shuffle Orchard Park August 10

Bike MS: Hudson River Ramble Schodack September 21

Visit our website, MSupstateny.org, for details on events and programs

Non-Profit OrgU.S. Postage

PAIDRochester, NYPermit No. 764

National Multiple Sclerosis SocietyUpstate New York Chapter

National Multiple Sclerosis Society1650 South Avenue, Suite 100Rochester, NY 14620-3901

CHANGE SERVICE REQUESTED

Upcoming Chapter Events Location DateMS Research: The Progress, The Promise Rochester April 18

MS Research: The Progress, The Promise Amherst April 23

MuckFest MS Boston, MA April 27

Walk MS Buffalo May 4

Walk MS 16 Upstate NY locations May 5

Money Matters with MS Geneseo May 6

MS, Sex and Intimacy Teleconference May 9

Walk MS Mohawk Valley; N. Chautauqua May 19

World MS Day Worldwide May 29

Buffalo Golf Fore MS East Amherst June 10

Improving Independence in Progressive MS Teleconference June 12

Live Fully, Live Well Lockport June 15

MuckFest MS Essex County, NJ June 15

Walleye Fishing Tournament Buffalo June 20

Party in the Garden Sodus June 29

Bike MS: Finger Lakes Challenge Keuka Park July 20 – 21

Bike MS: Southtowns Shuffle Orchard Park August 10

Bike MS: Hudson River Ramble Schodack September 21

Visit our website, MSupstateny.org, for details on events and programs

CONNECTION - National Multiple Sclerosis Society · interest and resume to the chapter headquarters: Care of Governance Committee Chair, 1650 South Avenue, Suite 100, Rochester, New

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