MS Connection - Fall 2010

Oklahoma Bike MSPAGE 12

Dedicated Volunteer for 22+ Years By Stephanie Dudley, Marketing Intern

Mike Keim has been volunteering with the National MS Society, Oklahoma since 1988, following his older sister’s diagnosis in 1987. His first volunteer experience was with the Tulsa Walk MS (then known as the Super Cities Walk for MS) as a greeter, holding balloons. Mike has continued volunteering over the years as a committee member on the Tulsa Walk MS and Bike MS committees. He also volunteers for Uncorking the Cure for MS and many other MS programs, because of the relationships he has gained through becoming friends with other volunteers.

Mike has accumulated many Walk MS and Bike MS shirts after his more than twenty years with the Society and he recently had an opportunity to put them to good use by donating them to a friend whom was sending much needed assistance to Haiti.

When I asked Mike which event he assists with was closest to his heart he responded, “If I say one or the other (Bike MS or Walk MS) the opposite would get mad at me.”

M OV I N G TOWA R D A W O R L D F R E E O F M S FA L L 2 0 1 0

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Uncorking a Record PAGE 4

Airplane Fly In & High Heels PAGE 6

OK Corrals MS PAGE 5

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Mike Keim with Brandi Davidson at Walk MS Tulsa 2009

THE MSCONNECTION is published by the National Multiple Sclerosis Society, Oklahoma, Building 7, Suite 103, 4606 E. 67th St., Tulsa, OK 74136-4950.

Tulsa Office 918-488-0882Outside Tulsa 800-344-4867Oklahoma City Office 405-488-1300Tulsa Fax 918-488-0913Oklahoma E-mailstaff’s first name.last [email protected] www.nationalmssociety.org/ok

Chairman • Patrick EvansVice president • Paula H. CortnerDirector of Development • Lucy FraserDirector of Development • Kelly DooleyCommunications Manager • Brandi DavidsonDevelopment Manager • Cristy RacyDir. of programs & Services • Sharleen DupeeClinical programs Manager • Lisa Rutledge, Jennifer PhilpHealth Resource Advocate • Candace RichersonHealth Resource Assistant • Clayton MillerDirect Service Coordinator • Donna BolainYouth programs Coordinator • B.J. McBrideFinance Manager • Denise AllenData Mgmt Coordinator • Lisa GrayNewsletter Editor • Brandi DavidsonNewsletter proofreader • Lisa Gray

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

©2010 National Multiple Sclerosis Society, Oklahoma

Vice president’s ImpressionsDear Members,

We are unstoppable – The Annual meeting of the new South Central region will be in Tulsa in January and will we have much to celebrate? OH YES; we are unstoppable! In 2010 we had one of the most exciting times ever in MS research: the first Oral Disease Modifying therapy for MS was approved, a “walking pill” for increased mobility is now on the market, a new treatment for involuntary outburst of laughing or crying is available, exercise and lifestyle choices are now known to influence MS, and CCSVI may be a new effective treatment. A new Tax check off box will allow all Oklahomans to support MS, and we have reorganized as a chapter to become more efficient and productive. There is a movement going on!

But is all of this enough? No. The National MS Society has committed $250 million in research funding for 2011 through 2015. We need to STOP the progression of MS, we need to RESTORE the damage caused by MS and we need to END the effects of MS NOW. Too many people suffer with primary progressive MS and that is not acceptable, and too many children (Our Children!) are being diagnosed with MS. MS is the enemy and we are unstoppable.

Join us at the Annual meeting live or on the internet on January 29th to find out more about our new plans. We can do this together, I plan to count on you, count on me.

Warm Regards,

Paula H. CortnerVice PresidentOklahoma/Arkansas

2 I JOIN THE MOVEMENT: nationalMSsociety.org 3TOLL FREE NUMBER 1 800 344 4867 I

What’s in a Name? By Paula H. Cortner

The Oklahoma Chapter has officially become part of the South Central Region; we are all now working together as one large entity to better serve the needs of people with MS. Our region consists of Oklahoma (yeah us!), Arkansas, Louisiana, New Mexico and Texas. We anticipate that regionalization will increase the breadth and scope of programs and services available to people with MS across the region. Regionalization is expected to increase the efficiency and effectiveness of the Society’s operations by fostering collaboration, communication and teamwork across the region.

Our full staff has been retained and some of their scope of work has broadened to help and assist others across the region. Publications and communications will continue to be distributed throughout the region. Programs and services will still be managed and delivered on a local

level. We are still in our offices in Tulsa and in Oklahoma City, our current phone numbers and website remain in effect, we will still rely on volunteers and donors to fulfill our promises to people with MS, so we may operate a little differently but we will just keep getting better!

I encourage you to find out all about our reasons to celebrate this change when we host the first South Central Region Annual meeting in Tulsa on January 29, 2011. We welcome you to join us in embracing change for A BRIGHT future.

So what’s in a name? If we can keep people with MS at the center of all we do and have a greater impact on their lives and in funding our mission to end MS, then we don’t care what you call us, we are still in Oklahoma and we are proud to associate with all of our friends and partners across the South Central Region.


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CHApTER NEWS

His sister passed away four years ago, however Mike continues to volunteer with the mindset that any assistance is always helpful. Mike’s biggest hope for the future of the National MS Society is a cure, but until then he would simply love to see the interaction between the clients, staff and volunteers continue.

Are you interested in becoming a volunteer for the National MS Society? Volunteers are needed representing a wide variety of talents and backgrounds, all with one mission: to create a world free of MS. If you would like more information on joining a committee or volunteering for the Society in another capacity, please contact Cristy Racy at 800-344-4867, option 2, extension 22. Mike Keim with Juana & Clarence Driver at

Walk MS Tulsa 2009


CHApTER NEWS

By Brandi Davidson

This year’s Uncorking the Cure for MS wine auction with presenting sponsor Asphalt & Fuel Supply was held on Friday, Aug. 27 at the beautiful Tulsa Historical Society. With the leadership of Debbie Garner as Chairwoman along with the dedication of our 2010 committee, the event raised a record $78,000 to benefit Oklahomans living with MS. A fundraiser that began as a special board project to raise additional funds for MS research several years ago has become so popular that it had nearly 300 people in attendance this year.

Guests of the event enjoyed a casual evening filled with wine from Calistoga Cellars, hors d’oeuvres from Lambrusco’z To Go and entertainment

provided by local musician Steve Liddell. Many fabulous live and silent auction items were up for purchase featuring fine wines from around the world, unique trips and items from local vendors. The Wall O’ Wine filled with a variety of wines of value up to $400, sold out within the first hour!

Honorary Wine masters Tom & Melanie Tate, Patron Chairs David & Debbie Carder and presenting sponsor Asphalt & Fuel Supply owners, John & Leigh Reaves had a wonderful time celebrating with all those who attended and helped raise funds for those living with MS. Please check out photos from the event on our Oklahoma Chapter MS Facebook page.

uncorking Raises a Record $78,000

CHApTER NEWS


By Brandi Davidson

The 31st Annual Close/MS Regatta was held on September 11, 2010. This year, altogether, the Close/MS Regatta, the Moonlight Sail for MS and the Launch Party raised nearly $70,000 to help Oklahomans with multiple sclerosis. This was accomplished by 48 sponsors, 24 people giving in-kind donations, 100 participants at the Moonlight Sail, 50 people and companies donating auction items, 150 participants at the Launch party and 125 participants at the Regatta.

Honorary Chairman of the Close/MS Regatta was Ken Greenwood and the Committee Chairwoman was Mary Snider. The “MS Cup”

(first overall boat) was won by Roger Kerr in his Merit 25. Many “VIP” spectators rode on Captain Pat Devlin’s houseboat to watch the race from the sidelines. At the celebration and presentation of the awards, participants enjoyed food from Rib Crib Sand Springs and entertainment provided by long-time supporter Acoustic Freight Train who has volunteered to play for the Regatta for ten years.

Special Awards for the Regatta....Spirit of the Launch Party – Ray AdamsSpirit of the Regatta – Mike LangBest Boat – Rod Sherwin

OK Corrals MS

The MS Center of Oklahoma is currently enrolling participants for a reduced frequency Copaxone trial. Instead of the daily injection, the study is using Copaxone 3 times a week. To qualify for the study individuals must not have been on Copaxone before and be fully ambulatory. If interested, contact Micki at (405) 936-5717.

MS Trial Recruiting


CHApTER NEWS

Members and guests enjoyed a fun filled weekend retreat at Post Oak Lodge, in Tulsa, Oklahoma October 29-31st. The weekend was packed full of live entertainment with Zach Benge, local Bixby High School performer who kicked everything off for us Friday night with a performance on keyboard and guitar. Saturday was filled with massage therapy and paraffin hand wax treatments, caregivers enjoyed an “on-shore excursion”, and many guests enjoyed the wonderful October weather sitting in porch swings relaxing and visiting with new and old friends. There were cruise-themed activities throughout the day including Yoga led by

Prakash Dave, a dedicated volunteer who leads Prana Yoga at The Center in Tulsa, bean bag toss, washers, horse shoes and catch and release fishing…some even took a dip in the heated pool…there was something for everyone.

A cruise would not be complete without, a Captain’s Dinner. All guests enjoyed a lovely dinner with live music Saturday night, and 8 lucky guests were randomly chosen and invited to sit at the Captain’s table for a special VIP Dinner. Our very own, Captain John Rhue and his wife Brenda Rhue (2008 Getaway Weekend King

A Successful Voyage was experienced on the Majesty


CHApTER NEWS

and Queen) hosted guests while Mz. Entertainment, Valonda Pannell performed. The Cabaret Variety Show featured, a high energy light show, performed by Ben Black, Jiggle the Handle (an acoustic guitar duo, which included John O’Neill and Bryan Smith) and Mz Entertainment, Valonda Pannell came back on stage with two back-up singers for a dynamite show featuring music by Tina Turner and Diana Ross. The Majesty of the Seas Getaway Weekend was wrapped up with a hot breakfast buffet and the crowning of our new King & Queen of Getaway Weekend, Clarence and Juana Driver!!

Congratulations to our new royalty!! Bon Voyage to another exciting and fun Getaway Weekend!

A special Merci Beau Coup to our sea worthy sponsors!! Closebend, Circle Cinema, Windycrest Sailing Club, Camp Loughridge and Meeks Group for their generous donations.

And last but surely not least, THANK YOU to all the great volunteers and staff that made this weekend possible!! You are truly appreciated!!

of the Seas, Getaway Weekend 2010 Cruise!!


CHApTER NEWS

By Brandi Davidson

What do airplanes and riding bicycles in high heels have in common? Two things…Bringing people together to raise awareness of MS and raising money for people living with MS! We are so thrilled to let you know about two recent community events that were held in your area.

In Holdenville, Oklahoma, Wes Arnett and a dozen volunteers put on the 2nd Annual Dustbowl Fly In for MS on Friday & Saturday, September 10 & 11. It was a beautiful weekend and several hundred people came out to participate and support the event. They raised $600, there were around 30 pilots flying model airplanes and over 300 model airplanes were on display. If you would like to volunteer to help at

next year’s event on Sept. 16 & 17, 2011 contact Wes Arnett at [email protected]

Then, in Tulsa, Oklahoma, Dana McBride and Mary Benes put on the first ever Mile High for MS one-mile bike ride. Those who participated wore costumes and rode the one-mile in high heels, boys and girls alike! With special guest, Mia Fleming, Fox 23 News anchor, the day was a huge success and raised $600 for MS. There were a little over 30 participants and volunteers.

You too can make a difference in your community! If you have hosted or are hosting an event in your area, let the National MS Society, Oklahoma know about it. Contact Brandi Davidson at [email protected] or 918-488-0882.

Did You Know? Airplane Fly In & Riding in High Heels Have Something in Common?

Oklahoma Dustbowl Flyin in Holdenville

Special Guest, Fox 23 News Anchor, Mia Fleming

Volunteers at Mile High for MS


CHApTER NEWSBy Lucy Fraser

The 4th Annual Smarty Pants Trivia Night was held on Thursday, August 26 at the Oklahoma Heritage Center. About 350 fans enjoyed an evening of brain-numbing trivia questions, emceed by Mark Rodgers.

Sponsors of the evening included Chesapeake Energy, Cox Communications, Skyline Media, Northwestern Mutual, UniFirst and Linda and Don Wiens. Participants enjoyed a buffet provided by Johnny Carino’s and Fish City Grill. Thanks are also in order for chairman Packy Evans, the steering committee and all the volunteers who helped plan and work the event.

Prizes and awards were made to the top two

teams. Back for a third year win, Sara and Jay Kyte’s table took the first place honors. A Chesapeake Energy table took the second place award. Best Costumes and Best Decorations went to Debbie Steen’s T-Town Mobsters and the “Jersey Shore” table.

Watch the website and future newsletters for dates for the 2011 date; or contact [email protected] to be added to the mailing list.

4th Annual Smarty pants Trivia Night

The “Jersey Shore” table toast with their Best Table Decoration trophies.

Debbie Steen and the T-Town Mobsters display their winning Best Costumes.

Walk MS: Fall Walks Raise Nearly $40,000 Walk MS events were held in Stillwater, Enid, Muskogee and Edmond in September and October. Nearly 400 participants and volunteers gathered to show their support, raise money and awareness for multiple sclerosis in their community. They were joining the movement to create a world free of MS. So far this year, the Fall Walk MS events have raised nearly $40,000.

Congratulations to each of the volunteer chairwomen who have worked tirelessly to put on such great events: Connie Walker – Stillwater; Linda Wiens and Janet Cordell – Enid; Melissa McLain – Muskogee; and Talesa Shores – Edmond. And thank you to the committee members and volunteers who helped make this year’s events so successful!

Enid Walk MS photo courtesy of Phillip Whitaker

Enid Walk MS

Muskogee Walk MS


CHApTER NEWS

Kelly Dooley• Kelly joined the

Oklahoma office as Development Director in October 2010. He joined the National MS Society in January 2001 at the Dallas, TX office.

• Previously worked as a Relocation Associate

for Americorp Relocation Management.

• Graduate of the University of Oklahoma, received a bachelor’s degree in Psychology.

• Kelly is a member of the OU Club of Tulsa.

• He has been married to his wife, Amy, for five years and they have a two-year-old daughter, PK (Parker Kollin).

• “I love the state of Oklahoma. Even though I was raised in Dallas, I have always thought of myself as an Okie trapped in a Texas body. The mission of the MS Society is something I believe in strongly, no matter where I am…”

Welcome New Staff

Stephanie Dudley• Stephanie joined the

Oklahoma office as the Marketing/PR Intern in May 2010.

• She is a student at the University of Tulsa, double-majoring in Management and Marketing.

• Stephanie is the current Vice President of

Administration of Delta Delta Delta at TU.

• Her family resides in Independence, Missouri.

• “I was initially interested in the internship because of my history with non-profit organizations. After spending time in the Tulsa office I realized the amazing atmosphere and culture that was provided by the NMSS and saw the internship as an opportunity to learn, grow and develop skills that I will be able to take with me and use in my future endeavors.”

BJ McBride

• BJ joined the Oklahoma office as the Youth Programs Coordinator in October 2010.

• Previously worked as a Part-time Manager with Comet Cleaners in Sand Springs.

• Graduate of Oklahoma State University, received a bachelor’s degree in Accounting & Finance.

• “Various people within the office (as well as other volunteers/people living with MS) have inspired me to “do” more than simply volunteer.”


CHApTER NEWS

Clayton Miller• Clayton joined the

Oklahoma City office as the AmeriCorps Member -Volunteer Coordinator and Research Assistant in October 2010.

• Previously worked as a summer intern at Turtle Rock Farm:

Sustainability and Spirituality Retreat Center.

• He will graduate in December 2010 with a double major in World Religions & Philosophy.

• Clayton is president of Delta Alpha Chi: Men’s Christian Service fraternity and the founder and current member of the Oklahoma City University - Community Garden.

• His little sister is getting married next August and he couldn’t be happier.

• “I’ve always felt the need to work for people and by joining the team at the NMSS I know my efforts will effectively and efficiently go towards serving thousands of Oklahomans.”

Jennifer philp• Jennifer joined the

Oklahoma office as a Clinical Programs Manager in September 2010.

• Previously worked as a Clinical Programs Manager for the NMSS, Oklahoma office nearly 5 1/2 years ago.

• Graduate of Duke University, received a bachelor’s degree. Received her master’s degree in Public Health from the University of Oklahoma Health Sciences Center.

• Jennifer is a member of the Tulsa Global Alliance, the Alliance Francaise of Tulsa and the Oklahoma Public Health Association. She is also a member of First Presbyterian Church of Tulsa.

• She and her husband, Tom, have two sons, Joshua (5 1/2 yrs) and Alex (2 1/2 yrs).

• “I discovered that the Oklahoma office, and the NMSS organization as a whole, is a powerful team made-up of stellar individuals on all levels. It is easy to be inspired when you are surrounded by good people and enriched with purposeful action.”

NOTEThe Winter issue of the Oklahoma MS Connection will be available on the website at www.nationalmssociety.org/ok. You can access the newsletter at the end of January. We will email the newsletter to those for whom we have an email address. Questions? Email [email protected].

The Oklahoma Bike MS:The Mother Road Ride presented by Sam’s Club was a HUGE success! Approximately 700 riders made their way from Tulsa to Oklahoma City over the two-day journey. The weather was nice and sunny with some wind on their tails and occasionally in their face… but, no rain! YES! It was a great ride and it meant a lot to the riders as we celebrated its 25th years in existence.

This is the second year for this route and we will continue to build its success. Now that we have the two biggest cities involved and a great overnight

in Chandler, OK, there is no stopping the “Mother.”In Chandler this year, it was a “PARTY” atmosphere. Where else are you going to find 700 people in spandex, drinking beer, watching football, and walking around a little sore? It was quite a sight for all. There were seven team tents full of food, fun and fellowship.

The top fundraising team continues to set the standard for fundraising - Team Lawnchair! Led by the top individual fundraiser, Kevin O’ Sullivan. Another person we would like to recognize is,


Oklahoma Bike MS: The 25th Anniversary! By Kelly Dooley

TEAM TALK

Ray Mack. Ray is co-chair on the steering committee and the official team captain for Marathon Oil. Ray was honored at the National Convention in Chicago as the National Team Captain of the Year for the whole country.

Next year’s date has been set for September 17-18. Also, to let you know, there will be Victory/ Kick-off Parties in OKC and Tulsa in the spring. We are having ONE BIG party to serve as both a Victory and a Kick-Off. To go along with that, registration will open in the spring as well. We are

revamping the Website and want to make sure its ready when registration opens.

In the end, Bike MS raised over $450,000 and that is something to be proud of as we start planning for next year.

We will never lose sight of why this magnificent event is put on and that is to improve the lives of Oklahomans living with ms. On behalf of the over 3,200 people we serve in Oklahoma…THANK YOU!


TEAM TALK

2011 College Scholarships, Application Now AvailableMS shouldn’t stand in the way of education. The National MS Society’s scholarship program exists to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. Additional criteria include financial need, academic record, participation in school or community activities, and an essay (written by the applicant) on the impact of MS on his or her life.

In 2010, the National MS Society, Oklahoma

provided 13 High School Seniors in Oklahoma and Arkansas with College Scholarships. Awards range from $1,000 to $3,000 and a small number of four-year awards are offered.

Scholarship applications for 2011 awards will be accepted (online only) between October 1, 2010 and January 14, 2011. Scholars receive notice in May 2011. For detailed guidelines and application information on the program please visit the website at www.nationalmssociety.org/scholarship.

planning Wise program – Building Security, Independence and Life Balanceprogram purpose: To provide one-to-one 90 day consultation (time frame varies) over the phone for people with MS that provides professional assistance with: • Career/job coaching• Financial planning and insurance benefit

counseling• Direct financial assistance with COBRA

health insurance payments if appropriate

Eligibility: To qualify for the program an individual must meet at least one of the following criteria: • Lost employment in the last 30 days• At risk for losing employment• Considering a career change because of MS

Career Coaching: Client works with a professional career coach for a 90 day period (time frame varies) to achieve mutually agreed upon employment/career/personal goals. The coach is educated about the physical and cognitive challenges people with MS face. Goals may include:

• Set new goals to achieve focus and momentum• Take effective and focused actions immediately• Replace stress and effort with energy and flow• Achieve balance between work, family and

MS fatigue

Financial planning: Client works with a Certified Financial Specialist for up to a 90 day period. The client will come to understand important health insurance, short-term and long-term disability benefits, and will work with the client to set mutually agreed upon long-term financial goals.

COBRA Assistance: The program provides 3 months of assistance for COBRA or health insurance payments if appropriate. (This assistance is only provided to people who are actively participating in the program.)

For more information or to enroll in the program, contact the Direct Service Coordinator in the Tulsa office at 918-488-0882


CHApTER pROGRAMS


CHApTER pROGRAMSBe Our Guest at the South Central Annual Meeting We would like you to join us at the South Central Annual Meeting that will be held at the Crowne Plaza Hotel in downtown Tulsa, OK on Saturday, January 29 from 2 – 4 p.m. This year, you can be with us in person or watch online as we stream the conference Live on the Internet. We will post the link to the meeting on our website at www.nationalmssociety.org/ok.

We are thrilled that Ms. Channing Barker (Tulsa native) will be emceeing the Annual Meeting. We will share Oklahoma achievements, successes of our South Central friends, and celebrate programs & services achievements from 2010. Research updates and information will be provided by Dr. George Hutton. A volunteer recognition will follow the Annual Meeting.

We are Unstoppable! Join us virtually for your opportunity to vote and participate by asking questions at our Annual Meeting from the comfort of your home. If you would like to come to the Annual Meeting, please RSVP by calling Paula Cortner at 800-344-4867 option 2.

November Was National Family Caregiver MonthNovember was National Caregiver Recognition Month and the Oklahoma office of the National MS Society helped others celebrate their Caregivers. We asked those living with MS to write a “thank you” letter and send it to the Oklahoma office so that we could include it with a special gift that was mailed to the Caregiver. Thank you to those who participated. Some of the “thank you” letters will be featured in the Winter 2011 newsletter issue.

Over 50 million Americans are recognized during

November for National Caregivers Month, accord-ing to the National Family Caregivers Association. The National Family Caregiver Association reaches across the boundaries of diagnoses, relationships and life stages to address the common needs and concerns of all family caregivers. For more information on National Family Caregiver Month visit the National Family Caregivers Association at www.thefamilycaregiver.org or call 800-896-3650.

Channing Barker, emcee for South Central Annual Meeting


CHApTER pROGRAMS

By Candace Richerson

With the elections over, the new legislative session is just around the corner! Opening Session of Oklahoma’s 53rd Legislature will be at noon on Tuesday, January 4th, 2011. Attending an opening session is a remarkable experience. This year will be an historic day as we will witness our first female Governor deliver her budget and address the members of the Senate, the House and the Judiciary. Join me for the beginning of our Advocacy efforts at the State Capitol!

Monday’s at the Capitol is a non-partisan group, open to anyone who would like to promote awareness to our legislators of the needs of people living with MS. Last year this team was instrumental in getting HR 2710, our Tax Donation Box, passed and into law. Join us as we welcome new legislators, their staff, and introduce them to The National MS Society. This session, like last session, budget constraints will be an issue. Many of our members depend upon programs funded by the state. Your voice will be needed should any of these programs be slated for the chopping block.

Our Monday’s at the Capitol team will meet at 10:00 at the 4th floor snack bar located in the north corridor of the State Capitol. We will meet January 10th, & 24th; February 3rd & 15th; March 14th, 21st & 28th; April 4th, 11th, 18th, & 25th; May 2nd, 9th, 16th, 23rd. Plan now to attend one or all of our meetings!

Speaking of our Tax Donation Box, look for it on your 2010 Oklahoma State Tax Form beginning in December! If you have an accountant who prepares your taxes, please advise him or her that this option is new to the form. We must raise

over $7,500 each year for 3 years to stay on the form. I challenge you to tell at least 5 friends and relatives about this opportunity to donate $1.00, $2.00 – up to $25.00 using their refund or adding that amount to the tax they owe. This is an opportunity for people across the state, who may have never been to a walk or event, to contribute to the National MS Society, Oklahoma. All money collected stays right here in Oklahoma!

Our 2nd Annual Legislative Training will be Saturday February 12th – location and time to be announced. We will discuss how a bill moves through the legislature: from how ideas for laws are formed, to what steps it takes through committees on its journey toward passage or defeat. We will have guest speakers who will provide insights as to how to get your message out to legislators and an overview of the bill tracking system on the Oklahoma Legislature website. Democracy demands participation! Know what’s going on from the comfort of your home via your computer!

Our big Advocacy Event of the year is our Annual MS Oklahoma Day at the Capitol, Tuesday March 15th. This will be one of our MS Awareness Week events and a not-to-be-missed event!! We need a lot of volunteers to make this event a success! Planning committees are in the making. Be watching for more information about this important day.

Advocacy in 2011: Building New Relationships – Save the Dates


ADVOCACY

GILENYA IS APPROVEDTHE ERA OF ORAL DRUGS BEGINS

On September 22, the U.S. Food and DrugAdministration approved fingolimod capsulesfor reducing the frequency of MS attacks anddelaying the accumulation of physical disabilitiesin people with relapsing forms of MS. This is amilestone in MS therapy.

The new medication, under the brand nameGilenya (pronounced Jil-EN-ee-ah), will beavailable as a “first line” treatment, meaning thereare no recommendations for people to try otherMS therapies before trying Gilenya. Novartis, themanufacturer, says the drug will be available forprescription in coming weeks.

Gilenya is a new approach to controlling MS.It blocks receptors on some of the same T andB immune cells that have been implicated incausing MS damage. The drug causes some ofthese cells to remain in lymph nodes, inhibitingthem from migrating into the brain or spinalcord.

A second oral MS med is under review

Last July, the FDA agreed to give “priority review”status to EMD Serono’s cladribine tablets withthe hope of an approval decision this December.Cladribine is a chemotherapy drug that is used tokill T and B cells in the immune system and thusslow down the attack on myelin.

The arrival of therapies that do not requireregular injections greatly increases options –especially for people who are not doing well ontheir current drug or who have deep aversion toneedles.

An informed choice

While oral drugs have long been a goal forresearchers, the choice will not be quite assimple as putting down a needle and poppinga pill. Gilenya is a powerful drug with potentialside effects and risks as well as possibilities. Thelabel carries warnings about these, includingdecreased heart rate after the first dose. The drugalso increases risks of certain infections. In theclinical trials, two deaths from herpes infectionsoccurred in people who took Gilenya at a higherdose than the level that has been approved. Anumber of pretreatment tests will be requiredand people will be monitored for potentiallowered heart rate for six hours following theirfirst dose. On the up side, clinical trial datasuggest that Gilenya has a stronger impact onreducing relapse rates than a standard drug,Avonex, and also delays accumulation of physicaldisability.

For more details, including Frequently AskedQuestions, and references to the clinical trials,please visit nationalMSsociety.org or call usfor a printed copy of the September 22 NewsBulletin.

Last June, the FDA advisory committee considered data on figolimod.


MONEY MATTERS

PRESCRIPTION PARITY

A collaborative effort between the Society,legislators, clinicians and other health organizations paid off in July when the Part D Off-label Prescription Parity Act (H.R. 5732) was introduced into Congress. Sponsored by Representatives Mary Jo Kilroy (D-OH) and Mac Thornberry (R-TX), the bill is designed to allow coverage of medication prescribed for an off-label use when such use is supportedby peer-reviewed medical literature—as is currently the standard in Medicare Part B and Part D for medications used to treat cancer.

Other Medicare consumers, including those with MS, are currently unable to access safe and effective medications under Part D because the program won’t cover off-label uses of drugs—that is, for uses not specifically approved by the FDA. Nonetheless, many doctors—using their professional judgment and information from the medical literature—do prescribe medications off-label to treat symptoms of MS. These include Provigil (modafinil) and Nuvigil (armodafinil) for fatigue, and Zofran (ondansetron) for tremor.

Without this change in policy, individuals will continue to be denied coverage for treatment that could vastly improve their quality of life. “Prohibition of medically necessary medicines reduces treatment options for patients and compromises the private doctor-patient relationship,” said Linda Buchwald, MD, chief of neurology and medical director of the MS Comprehensive Care Center in Cambridge,Mass. “I want to be able to prescribe treatments that will be beneficial to my patients, at no unnecessary economic burden to them.”

MS REGISTRYThe Society has continued to work hard to help pass a bill in Congress that would establish an MS registry at the Centers for Disease Control and Prevention. A more accurate estimate of who has MS and how common it is could enhance areas of research, including genetic and environmental risk factors. The last national study of MS incidence and prevalence was conducted 35 years ago, and the lack of up-to-date information inhibits MS research and makes it harder to target programs and services.

Take ActionIf you are interested in either of these measures, check if your senators and representatives have co-sponsored the bills. Look up H.R. 5732 (Part D Off-label Prescription Parity Act) and H.R. 1362/S.1273 (National MS and Parkinson’s Disease Registries Act) on Thomas.gov. If they have not sponsored the bill, ask for their support by calling or writing their offices. Be sure to thank them if they have already become supporters.

(D-OH)

(R-TX)


Self-Help Groups

Group Meeting Info:

Claremore:Dottie, 918-625-1883

Duncan:J’Nell, 580-255-0886Kassie, 580-475-0576David, 580-252-2439

Mannford- MS-101:Gail T., 918-865-8212Gail S., 918-865-5001

Oklahoma City:Quail Creek GroupJody, 405-755-5756

Women’s Luncheon GroupJanice, 405-943-1103

Community Contacts:Ardmore:Linda, 580-223-2427

Atoka:Kim, 580-889-7307

Bristow:Dusty, 918-367-5203

Enid:Janet, 580-233-7973

Lawton:Cynthia, 580-588-3876

Mustang:Tena, 405-306-7349

Norman:Rebecca, 405-632-2334

Okmulgee:Karena, 918-752-0048

Wagoner:Larry, 918-687-3783

ATOMSJoe, 405-478-7990

Stillwater:Connie, 405-372-8617

Tulsa:• PACEGary, 918-455-4143, Don, 918-355-9809, & Sandra, 918-481-9928

• MS & The Working ProfessionalMary, 918-740-5916

Self-help groups include persons with MS, spouses, adult family members and friends. Please call the group leader or community contact for information.

Please call the noted group leader or community contact for further details or information.

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Find the most up To Date information on our Website – also, find links to Facebook & Twitter – www.nationalMSsociety.org/ok

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Tulsa, OKPermit # 157

Oklahoma ChapterNational Multiple Sclerosis Society4606 East 67th Street, Suite 103Tulsa, OK 74136

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POSTAL CARRIER – DATED MATERIAL PLEASE DO NOT DELAY

January29 – Annual Meeting (Tulsa)

FebruaryTBD – Couples Retreat

March5 – MS Ambassadors Training (OKC)14 – 20 – MS Awareness Week15 – MS Day at the Capitol (OKC)

Save the Date & Dates to RememberAprilTBD – MS Style Movement (Tulsa) 9 – Lawton Walk MS16 – Tulsa Walk MS30 – Oklahoma City Walk MSTBD – Women Against MS

luncheon (OKC)

MS Awareness Week is March 14-20: Let’s Move It!

MS Connection - Fall 2010

Documents

walk ms tulsa

ms programs

national ms society

ms research

bike ms shirts

bike ms committees

ok corrals ms page

tulsa office