Winter 2009 MSConnection

MOVING TOWARD A WORLD FREE OF MS | winter 2009

INSIDE tHiS iSSUe

Hampton roadS CHapter

nutcracker performancepage 3

Challenge walkpage 4

Chapter awardspage 18

Holiday partiespage 22

IMpORTANT FAcTS AbOuT ThE FLu AND h1N1 VAccINERegular flu shot: As in previous years, the National MS Society recommends a regular flu shot as a safe and effective vaccination for people with MS. The flu shot—which is a de-activated or “killed” vaccine—can safely be taken by individuals who are on any of the disease-modifying medications (Avonex®, Betaseron®, Copaxone®, Rebif®, Novantrone®, or Tysabri®).

FluMist Intranasal®: In 2003, the FDA approved a flu vaccine nasal spray “for healthy children and adolescents, ages 5-17, and healthy adults, ages 18-49.” According to Dr. Aaron Miller, the Society’s Chief Medical Officer, FluMist—which is a live, weakened vaccine—is not recommended for use by people with MS, and should specifically be avoided by any person with MS who is on an immunosuppressive medication such as mitoxantrone (Novantrone®), cyclophosphamide (Cytoxan®), azathioprine (Imuran®), or methotrexate.

Live-virus vaccines are more likely than de-• activated-virus vaccines to cause an increase in disease activity in people with MS.

A person taking an immunosuppressive • medication is more susceptible to developing an infection with the vaccine strain of the virus—an infection that may be particularly severe because the person’s immune system is suppressed.

The interactions between live vaccines and • the disease-modifying medications are not known.

h1N1 (Swine Flu) vaccine: On September 15, the U.S. Food and Drug Administration (FDA) approved four vaccines for the H1N1 flu virus. The vaccines are manufactured using similar processes by four different companies. An adult over the age of nine being vaccinated against H1N1 influenza will receive one dose of one of these vaccines. Children under nine will receive two doses.

CONTINUeD ON pAge 10

2 | Join tHe moVement: nationalmSsociety.org

cOMMuNITY cALENDARprograms in this section are not organized by the National Multiple Sclerosis Society.

Multiple Sclerosis Educational Group

The Multiple Sclerosis educational group is your opportunity to exchange information and coping strategies and get the latest on MS research and treatment in a comfortable and confidential environment. This program is designed for multiple sclerosis patients, caregivers, and families.

Next meeting:

Wednesday, January 6, 2010 at 7pm Topic: Nutrition Speaker: Dr. Lori Tafts Neurosciences Conference Room Riverside Medical Office Building 12200 Warwick Blvd. Newport News, VA 23601

The group is offered by Riverside Center for Neurosciences and will meet the first Wednesday of each month.

For more information call (757) 875-7880 or visit riversideonline.com.

757-490-96271-800-FIGhTMS

publication of the National Multiple Sclerosis Society Hampton Roads Chapter760 Lynnhaven parkway, Suite 201Virginia Beach, VA 23452

Chapter Chairman Jim Dyche

Chapter president Sharon L. grossman

Newsletter editor Robyn M. Hirsch

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 of contents or any product or service mentioned.

The mission of the National Multiple Sclerosis Society is to end the devastating effects of Multiple Sclerosis.

If you or someone you know has MS: Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at www.nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

© 2009 National Multiple Sclerosis Society, Hampton Roads Chapter

Please note that the Chapter office will be closed for the holiday season starting December 23 and will reopen January 4, 2010.

TAMING hOLIDAY STRESSThink about past holidays and choose two or three of your most cherished rituals. Cast off others that are just habit or obligation. That way you won’t burn out trying to do everything.

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EVENTS

The National Multiple Sclerosis Society, Hampton Roads Chapter

is pleased to announce its partnership with the Moscow Ballet for their 2009 great Russian Nutcracker! Join us at the Sandler Center for the Ruth’s chris pre-Show Reception to enjoy heavy hors-d’oeuvres, cider, and hot cocoa then experience the only great Russian Nutcracker performed by an international cast featuring the world’s prima ballerina! Tickets on sale now!

The partnership between Moscow Ballet and the National MS Society is extremely significant. Ballet is movement. MS stops people from moving. The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. Our mission is to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

Silver: Clark Nexsen Foundation

bronze: Atlantic Bay Mortgage group

Beach/Barton Ford Forbidden City

goldkey/pHR Hotels and Resorts, Ruth’s Chris Steak House - Town Center

Williams MullenGolden circle: Sandler Center

MOScOW bALLET pERFORMANcE OF ThE GREAT RuSSIAN NuTcRAckER TO bENEFIT ThE NATIONAL MS SOcIETY!pre-SHow reCeption SponSored By rUtH’S CHriS Steak HoUSe

When: Tuesday, December 15, 2009 5:30 pM - Ruth’s Chris pre-Show Reception at the Sandler Center 7:30 pM - performance Where: Sandler Center for the performing Arts Tickets: $100 ($50 tax deductible) Includes one of the best seats in the house, Ruth’s Chris Pre-Show Reception, private full cash bar, and free hors-d’oeuvres during intermission

ThANk YOu TO OuR SpONSORS:


EVENTS

hISTORIc WILLIAMSbuRG chALLENGE WALk MS A huGE SuccESS!The Inaugural Historic Williamsburg Challenge Walk MS was one of 10 Challenge Walks in the nation! In our first year, we had walkers and volunteers joining us from around the country to walk the roads of the past toward a future free of MS.

The hampton Roads chapter is thrilled to announce that we raised $178,932. What a success for our first year!

Join us September 25-26, 2010 for the experience of a life time! Challenge Walk MS 2010 is open for registration! Registration is a discounted $35 through December 31, 2009.

We’ll be touring Virginia’s Historic Triangle once again and look forward to another great event. To register visit www.fightMS.com.

Crowne plaza WilliamsburgFort Magruder

Bayer HealthCareeMD Serono

Sam’s ClubRuby Tuesday

Oleta Coach LinesCare-A-Lot pet Supply

Mancon

Teva NeuroscienceCollege of William and Mary

7-elevenIzod

Trader Joes’sKing’s Rentals

enterprise Rent-a-CarMargo Schanks & Mary Kay Cosmetics

ThANk YOu TO OuR SpONSORS:

WhAT A GREAT WEEkEND OF WALkS!Thanks to all walkers who joined the movement to create a world free of MS on September 26 at Fort eustis and September 27 at Mt. Trashmore. You made a difference in the lives of the over 2,700 area residents and their families who live with the challenges of this disease every day.

Walk MS 2009 raised $154,782. The funds provide vital research and programs such as financial assistance, educational teleconferences, information and referral services, durable medical equipment, and so much more!

We would also like to thank all of our volunteers whose hard work and dedication helped make the walks such great events! Together, walkers and volunteers have brought us one step closer to a cure! We look forward to seeing you next year on September 11-12, 2010.

“RIDE LIkE ThE WIND” AT bIkE MS 2010Dig out the leotards and legwarmers, parachute pants and acid washed jeans! We’re celebrating 30 years of bike MS in hampton Roads. That’s right! Bike MS started in 1981 and we’re planning a party! We’ll be doing the “Conga” and “Dancing on the Ceiling” June 5-6, 2010 on the eastern Shore.

For our 30th: let’s make it a reunion! Have you taken a break from the bicycle? Bring it to your favorite local bike shop for a tune-up and in the “Heat of the Moment” register to ride! Do you have friends or family who have been gone awhile? bRING ThEM bAck! Anyone who has participated in at least five Hampton Roads Chapter Bike Rides will receive a Big Wheel t-shirt. We’ll know how many rides you participated in by the number of “wheels” on your shirt!

Registration is only $30 through December 31, 2009. Accommodations are limited, so sign up today! Don’t worry if you have a habit of “Talking in your Sleep”… we’ll have a supply of earplugs for your cabin mates. Register at www.fightMS.com. See you there!


EVENTS

ThANk YOu TO OuR SpONSORS:Statewide Sponsor:

Atlantic Bay Mortgage group

platinum Sponsors: 94.9 The point and Admobile

Our canine costume contest Sponsor: Care-A-Lot pet Supply Warehouse

Food Finish Sponsors: Forbidden City, Domino’s pizza,

Super Donut and 7-11

Gold Sponsor: Teva Neuroscience

bronze Sponsor: UpS


EVENTS

bIkE MS OcEAN-TO-bAY RIDE


EVENTS

hISTORIc WILLIAMSbuRG chALLENGE WALk MS


WEEkEND RETREAT

FeBRUARY 13-14, 2010Wellness is a dynamic state of physical, emotional, spiritual, and social well-being that can be achieved even in the presence of a chronic illness or disability.

For a person living with MS, the road to wellness involves more than treatment of the disease. equally important are health promotion and prevention strategies, satisfying personal relationships, a strong support network, fulfilling work and leisure activities, a meaningful place in the community, and adequate attention to one’s inner self.

Thanks again to a generous grant from the ZiMS Foundation (www.zimsfoundation.org), the Hampton Roads Chapter is planning another Oceanside Weekend Retreat for those with MS. The program will include time to learn, relax, exercise, and have fun. So mark your calendars, arrange for babysitters, and get on the road to wellness starting with our Flip-Flop Workshops by the Seashore!

Flip-Flop Workshops to include*:Stress Management • Fatigue • Current Research • Cognition • Nutrition • exercising Your Way to Wellness • Social Security Disability • Managing Health Insurance • Caregiving for those with MS • Home Modifications/Universal Design •

Enjoy*:A Massage• A Beautiful Room Overlooking the Ocean • Saturday Night Dinner & entertainment• The Opportunity to connect with New and • Old Friends Other Surprise Touches to Make You Feel • pampered

*Workshops and Activities subject to change without notice.

FLIp-FLOp WORkShOpS bY ThE SEAShORE

QUoteS From 2009 attendeeS:“It was wonderful to have an opportunity to share my story. people lit up just from hearing about an experience that was similar to their own and in knowing that someone else really understood!”

“My husband and I really enjoyed the time [at the Flip-Flop Workshops]. We were able to relax and it felt as if it was our mini vacation. It was a treat for both of us.”

“This was a wonderful weekend, a chance to gain knowledge and some relaxation with friends that are also trying to obtain better knowledge of MS and how to live with MS.”

Early bird Registration (deadline 12/8/09)**:$65 first person; $35 second person

Registration (12/9/09-1/8/10)**:$75 first person; $35 second person

**Registration includes hotel room, meals, and all activities.

Scholarships are available on a needs basis; if you require a scholarship, please contact the chapter.

For more information or to register, please contact the chapter at 757-490-9627 or visit our website at www.fightMS.com.

REGISTRATION

IF YOu ARE 70 1/2 OR OLDER, REcENT LEGISLATIONS bENEFIT YOu!Congress recently approved legislation similar to the popular pension protection plan Act for a Charitable IRA Rollover. You can now make a gift to a qualified charitable organization using funds transferred from your IRA without paying taxes on your distribution.

The IRS will allow up to $100,000 per person in IRA rollovers given directly to charities. These gifts are tax- free and may help meet your required IRA distribution level. An IRA gift to the National MS Society, Hampton Roads Chapter, will fund critical research and provide programs and services to those living with MS.

Take advantage of this opportunity from now until December 31, 2009. Simply direct your fund administrator to transfer a portion of your IRA to the National MS Society and notify the Society of your gift intention. For more information on how to make a gift from your IRA contact us at 800-923-7727 or visit www.nationalMSsociety.org.


NEWS

people with MS and the people who care about them are discovering the potential of Facebook to raise awareness about the disease—and funds to fight it.

On the Society’s fan page at facebook.com/nationalMSsociety, over 11,000 fans are sharing their feelings and fears. It’s a space where people ask questions they don’t necessarily feel comfortable asking a professional, questions like how to manage fatigue and a toddler, or if there’s any merit to an herbal tea. You don’t even have to join Facebook to view the page.

Mansi Akruwala tapped into this potential in 2007 when she started a cause page at apps.facebook.com/causes/748—hers was one of the first to link to the National MS Society and is still one of the largest with 135,335 members. “I thought about how I could use this huge social network to do something,” said Akruwala, a neuroscience major at New York University who

is contemplating a career in MS clinical research.

And do something she did, including raising funds for the Society. But she also wanted to raise awareness. “My aunt was 36 when she was diagnosed,” she explained. “There’s so much people don’t know about MS. I thought I could spread the word.” She plans to add information on research, treatments, advocacy and MS events to the page.

But even more, she wants to it to be a unique, supportive space. “It’s not just a fundraising or awareness page, but an outlet for individuals to post how MS affected them.”

ThE SOcIETY cONNEcTS ON FAcEbOOk

Mansi Akruwala

Find out about MS Society events, as well as raise awareness and funds by visiting:

The National MS Society’s facebook cause page at facebook.com/nationalMSsociety

The Hampton Roads Chapters fan page by clicking on the facebook badge on our

homepage (www.fightMS.com)

FIND OuT MORE


NEWS

CONTINUeD FROM pAge 1

Three of the H1N1 vaccines are de-activated or “killed” vaccines that are administered by injection. These de-activated vaccines are considered safe for people with MS. One is a live, attenuated vaccine that is administered by nasal spray. The live, nasal spray vaccine, which is now available in some areas, should be avoided by individuals with MS. The supply of de-activated vaccine remains very limited.

Clearly, the initial supply of H1N1 vaccine will not be adequate to vaccinate everyone who would like to get it. The CDC has identified five groups to receive the vaccination on a priority basis.

It is important to note that people with disabilities (including people with MS) are not necessarily considered by the CDC to be part of this high-priority group. However:

The flu virus (like any other virus) can • precipitate MS exacerbations. A person with advanced MS or someone •with less severe disease (Kurtzke less than 6.0) who has reduced pulmonary function or has any difficulty with breathing is considered at risk for complications and a good candidate for the H1N1 vaccine.

We recommend that people talk with their MS doctor to determine if they are a good candidate for the de-activated H1N1 vaccine.

MARK YOUR CALeNDAR!2010 LINkSTELEcONFERENcE SERIESThe National MS Society is pleased to present a series of teleconferences on a variety of topics designed to link you with important information about living with MS. The series is made up of eight tele-conferences held Thursday nights (7-8pm) from January 21 through March 11, 2010.

each teleconference is presented by an expert and 2010 topics will include:

1/21 – Nutrition, Exercise and Sleep •1/28 – Financial Planning •2/4 – Alternative Therapies •2/11 – Cognitive Issues •2/18 – Accessible Travel •2/25 – • Bowel and Bladder Dysfunction3/4 – Emotional Balance & • Communication 3/11 – Current Research •

The series will be conducted using a toll-free number, so you can call from the comfort of your home.

Look for more information in a special mailing or on the Chapter’s website at www.fightMS.com.

h1N1 pRIORITY GROupSpregnant women• persons who live with or provide care for • infants under 6 months of ageHealthcare and emergency services personnel• Children and young adults aged 6 months • to 24 years of agepersons aged 25-64 who have medical • conditions that put them at higher risk for influenza-related complications.

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cLIck YOuR WAY TO MS LEARN ONLINE

Watch, read, or listen at nationalMSsociety.org/mslearnonline. MS Learn Online offers an extensive menu of topics on MS, available 24/7 and in the format of your choice. Whether it’s a pDF printout to relax in a chair with, an audio file on your Mp3 player, or an online webcast, all you need is a computer and a reliable Internet connection.

Visit archived presentations, or explore new ones. Feature presentations go live the first and third Thursday of each month. Upcoming topics include Disease Modifying Therapies; Hormones, gender and MS; and a series of programs on primary-progressive MS. Other topics will include pediatric MS, Complimentary & Alternative Medicines, and gait Issues in MS. Click on the Daily Minute for a one-minute factoid about MS. At Q&A, distinguished neurologist Dr. Mary Hughes answers a viewer’s question each week. e-mail your own question to [email protected].

• We’re pleased to present our annual listing of clinical Trials in MS 2009, featuring ongoing MS trials, as well as those that are being planned or that have been recently completed. This year’s list of 129 studies indicates an exciting time in MS research, with therapies progressing through the drug development pipeline. Check on research progress – and see if any trials that need volunteers would be useful to you or a family member – at nationalMSsociety.org/research/clinical-trials.

• For Spanish speakers: Q&A with Dr. Victor Rivera. New podcasts are on our national Web site featuring Dr. Victor Rivera, director of Maxine Mesinger MS Clinic in Dallas. He answers in Spanish questions about diagnosis, MS attacks, treatments, pregnancy, stress, memory problems and more. go to nationalMSsociety.org/espanol.

• how did we do in 2008? The Society’s annual progress report is available online at nationalMSsociety.org. Click “About the Society” in the gray bar on top of the screen and select “Annual Reports.” Move Others tells the story of what the Society accomplished last year and profiles some of the inspiring people who helped do it. Complete financial information is also posted here to review online or print out.

STAY INFORMED


ADVOcAcY

NEW bILL SEEkS TO REDucE OuT-OF-pOckET DRuG cOSTSpeopLe witH mS CoULd SaVe more tHan $6,000 on diSeaSe-modiFying tHerapieS

In August, national health care reform took a step forward when Senator John D. Rockefeller IV (WV) introduced the Affordable Access to prescription Medications Act of 2009 (S. 1630). A similar bill was introduced to the House in October. Like the bill in the Senate, the House bill would create a monthly $200 per medication cap on all out-of-pocket prescription drug costs, and a monthly $500 per person cap for those taking more than one medication.

According to a 2006 survey, 20% of people with MS polled either did not fill a prescription, skipped medication doses, or split pills. Many of them are insured. But a growing number of insurers are moving expensive medications onto specialty tiers, pricing the treatments out of reach.

“people with health insurance typically pay a fixed amount for drugs on the first three tiers of a formulary,” explained Kimberly Calder, MpS, director of Insurance Initiatives at the Society. “But when an insurance company moves a drug to the fourth, or ‘specialty,’ tier, the insured becomes responsible for a percentage of the drug’s cost, anywhere from 20-35% or more.” For drugs like the MS disease-modifying treatments that means thousands of dollars.

“The National MS Society is grateful to Senator Rockefeller for his leadership in supporting caps on monthly out-of-pocket costs,” said Joyce Nelson, the Society’s president and CeO. “This bill would provide peace of mind for thousands of Americans by helping to ensure access for people living with chronic disease like MS.”

For more information about the Affordable Access to prescription Medications Act and to help advocate for public policies that benefit the lives of people living with MS, visit nationalMSsociety.org/advocacy.

GET bREAkING MS NEWS IN YOUR INBOx!

Receive the latest research news, get the inside scoop on recent MS advocacy efforts, meet real people living with MS … and more. Visit nationalMSsociety.org/signup to create your user profile and start receiving Society e-mail communications

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RESEARCH

ThIS WAY TO A hEALThY, hAppY MOuThWe all know good dental care prevents infection, promotes better nutrition and keeps your smile happy. Regular brushing, flossing and visits to the dentist can even help forestall expensive future procedures, like root canals.

But, OK, brushing and flossing can be difficult if you experience numbness, spasticity, tremor or fatigue. It may be the last thing on your mind to schedule your twice-a-year cleaning and dental exam with so many other medical appointments to handle. But don’t give in. Here are a few things you can do.

• Get a grip with tooth “aides.” Ask an occupational therapist about electric toothbrushes, or toothbrushes with a built up or extended handle. You can also try wrapping the handle with a washcloth or sliding it into a tennis ball with a slit cut into it. Weighted toothbrushes may help with tremor. Visit abledata.com for some examples, plus a few other items such as one-handed toothpaste dispensers.

• Save energy for the important things—like flossing. There are easy-to-use flossing “swords” available in drugstores so the job can be done one-handed. Multitask—floss while watching television or in bed. If you’re too tired at night, floss in the morning. Before sleep is preferable, but any flossing is better than no flossing at all.

If standing at the sink is tiring, sit down to brush and floss. You can also try asking a family member to help. Long-handled toothbrushes can be held by a second person.

Schedule dental appointments for the time of day when you have the most energy.

• keep your powder dry and your mouth moist. Some medications used to treat MS symptoms can cause dry mouth, which in turn can lead to gum disease or mouth infections.

Talk to your health-care providers. They may be able to adjust the dose or even change the medication. If not, ask about a prescription for an oral rinse or a recommendation for an over-the-counter remedy. You can also try squirting small amounts of lemon juice into your mouth or sucking on sugar-free lemon candies. Drink plenty of water—staying hydrated will help. Use a humidifier at night and avoid alcohol, tobacco and caffeine.

LIVING WITh MS

ThE MERcuRY QUeStion

Very little evidence exists to link mercury-containing amalgam dental fillings and MS. And to have dental fillings removed or replaced is expensive. However, if you are worried about having new amalgam fillings, ask your dentist about alternatives, such as porcelain.


LIVING WITh MS

No discussion of MS pain in 2009 is complete without mentioning the potential of cannabis compounds for nerve pain or spasticity. A number of small-scale investigations report promising results. The National MS Society is currently funding several studies of cannabis for spasticity. Increasingly, researchers have focused on extracts that are not smoked, as there is a wide medical consensus that marijuana smoke can be toxic to lung tissue.

Because of concerns that coordination, cognition (thinking and memory) and other functions affected by MS could be worsened by cannabis, the Society convened an expert task force in 2008. They decided not to recommend medical marijuana. This decision was not based on legal barriers alone. “Studies to date do not demonstrate a clear benefit compared to existing symptomatic therapies and … issues of side effects, systemic effects, and long-term effects are not yet clear.” (See “Recommendations Regarding the Use of Cannabis in Multiple Sclerosis” in expert Opinion papers, under “For professionals” on the Society’s Web site. The Society will review this when better data become available.

AN MS pAIN chEckLIST Speak up. MS pain is real. More than half of all

people with MS experience pain at some time or another. A best first step is to describe it. Make a list of when it kicks up, where it is in the body, and what it feels like. Tingling, burning, aching, stabbing, whatever. This will help a physician make a diagnosis. See next item!

Get an assessment. Take the list to a physician who will work with you to figure out if your pain is muscle-and-bone pain (usually from posture problems), neurologic pain (from short circuiting nerves), or spasticity (common in people with MS). If necessary, refer your professional to “pain in Multiple Sclerosis” on nationalMSsociety.org. Click “For professionals” in the gray banner at the top.

Follow a regular pain medication schedule. If you are prescribed a pain med, take it according to a schedule, not after pain gets going. Many people try to tough it out, believing less medication will be better, but medications don’t work as well if taken after pain has started.

Take a “whole person” approach. Regardless of the type of pain or the therapy prescribed, other things can be added to reduce pain’s impact: meditation, music, humor, hypnosis, massage, behavioral therapy, exercise, relaxation techniques, yoga. Discuss options with your provider.

connect with others. Most people find life easier when they learn more about MS pain and reach out to others to share successful coping. go to the yellow “Symptom Information” box on the home page of nationalMSsociety.org to gather information about pain in MS and check out our self help group listing on page 23.

MARIjuANA – tHe QUeStionS ContinUe

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RESEARch

WhERE WE STAND IN RESEARch: chALLENGES & OppORTuNITIES By JoHn r. riCHert, md

There has never been a more exciting time in MS research than now. How are we planning to maintain critical discovery in such a challenging economic environment?

First, we are moving ahead. This year alone, we’re providing over

$33.5 million to support 345 new and ongoing projects in our core research portfolio, plus $1.5 million for Fast Forward, our drug development subsidiary, which is also attracting its own new funding streams. Thanks to the efforts of our MS activists, an additional $5 million has been specifically set aside for MS research out of the 2009 Department of Defense budget.

Second, we have three clear research goals — Stop MS, Reverse the Damage, and End MS Forever. Here are some exciting projects making headway in our three-pronged approach:

• Our portfolio of projects focusing on immune aspects of MS, in particular the large-scale clinical trial of a pregnancy hormone, estriol, and Fast Forward’s recent investments in promising immune-modulating molecules are opening up new avenues to Stop MS.

• Our research on rehabilitation and health care delivery, and our four international teams working on nervous system protection and repair (funded by the promise: 2010 campaign) are making tremendous progress, including

plans for small-scale clinical trials to test the safety of cell therapy. These are examples of strategies to Reverse the Damage.

• The definitive scan for all common MS-related genes being performed by the International MS genetics Consortium promises a wealth of data. This international collaboration launched by Society funding has the potential to help us find ways to End MS Forever.

And finally, we are prioritizing our spending to focus on what’s most important. Our choices--which we believe will be temporary-- include

• To continue to fund our discovery research portfolio and fellowships at reduced levels.

• To place some research award programs on hold.

We hope that the reduction will be of short duration. Should it become necessary to continue on this path, we know that some established researchers and some promising young scientists will abandon MS to move into areas where funding is more plentiful. We have to do everything possible to keep them in the MS field.

We are poised to make quantum leaps forward. exciting new technologies, like gene chips, proteomics, and new imaging techniques are allowing scientists to visit age-old questions about MS in new ways. Now more than ever, we need the flexibility and resources to pursue the most promising leads.

each of us plays a crucial role in fueling MS research and ensuring that the brightest minds continue to pursue the answers that we so anxiously await. Now is the time when each of us must take stock of our own priorities and ask, “What more can I do?” and “Who else do I know who could help?” please act now!


NEWS

GOT cOVERAGE?If you are covered by Medicare, now is the time to weigh your prescription drug coverage options. The annual enrollment period for the Medicare part D prescription drug program begins November 15 and runs through December 31. Coverage itself begins in January.

During this period people with Medicare can enroll in a plan or change their enrollment from one plan to another.

All plans have different costs and benefits from year to year. It is crucial for all beneficiaries to carefully review the 2010 options and make the best choices for the coming year. By now you should have received a letter from your current drug plan regarding details on increased costs to you and other changes they’re planning for 2010. Reforms to Medicare are in the news but no changes have been made, so consideration of the “donut hole” remains important.

For more information contact Medicare at 800-MeDICARe, visit medicare.gov, or call us and ask to speak with an MS Navigator.TM

2010 SchOLARShIpS appLy now!

The Society’s scholarship program helps highly-qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college.

Scholarship applications for 2010 will be accepted between October 1, 2009 and January 15, 2010. For guidelines and application information, visit nationalMSsociety.org/scholarships.

emily King 2009 Scholarship Recipient

ITEMS FOR SALEpower Wheelchair: permobil C500 used 2 months inside only, for left-handed user. Custom built for 6 feet tall medium-built man. Control panel with joystick. Lifts to full standing position, reclines, raises seat up, has lumbar supports. Includes detachable writing/eating surface. Cost is $10,000, about 70% of purchase cost. For more information or to purchase, please contact Bev Kearney at 804-694-1129 or email at [email protected].

The National Multiple Sclerosis Society assumes no liability for the condition, operation, or quality of items listed as items for sale. Such listings appear for informational value only. All transactions are solely between the buyers and the sellers.

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YEAR END AppEALS ARE ON ThEIR WAY

GIVING

even in tough economic times like this year, charities will be seeking year-end contributions. America has a rich history of philanthropic giving in good times and in financially challenging time. As you make your plans for year-end gifts, we hope you will remember the following about the National Multiple Sclerosis Society:

1. We consider you a member of our family. Whether you are a recent friend of the National MS Society or a longtime supporter, we value your interest and involvement. We consider you a partner with us in this great movement towards a world free of MS. You are part of our family. Together, we share a common commitment, a common mission.

2. We remain true to our mission. As you know, our commitment to people with MS is to be “a driving force of MS research, relentlessly pursuing prevention, treatment and cure.” We make our plans, build our budgets and monitor our results committed to our mission. You can have confidence that we are staying the course.

3. We depend on your philanthropy. We rely on your financial support to help us accomplish our important mission. The more you give, the more we can do. It’s that simple. On the other hand, without you and our other supporters, we can not move toward a world free of MS.

4. We pledge financial fidelity. Like you, we wince when we hear of financial impropriety in corporations or nonprofit organizations. We affirm to you that financial integrity is a primary objective. each contribution to the National MS Society is treated carefully and with a keen sense of stewardship. We maintain the highest standards of accountability and transparency. Our books are open, and we invite you to review our annual reports on our website, national MSsociety.org.

5. We offer personalized service. Do you have appreciated stock or real estate that would make a tax-wise gift? Do you need to receive lifetime income as part of your gift to the National MS Society? The Society has a charitable gift planner to answer your questions. please call 800-923-7727 or contact us through our website at nationalMSsociety.org.

As the year-end arrives and your thoughts turn toward year-end charitable giving, please remember the National MS Society and the Hampton Roads Chapter with a gift that is most appropriate for you at this time.


each year, the Hampton Roads Chapter hosts an annual meeting to reflect on the past year’s successes and challenges, as well as to present fundraising awards and honor those who have made a difference in the world of MS. Four honorary awards were presented at the Westin Town Center on October 29, 2009: Corporate Service, Outstanding Committee Member, Volunteer of the Year, and the Make Your Mark Awards. congratulations to this wonderful group of people who selflessly put people with MS in the forefront of their lives.

Sandra Doddy received the Outstanding committee Member Award. When the Hampton Roads Chapter was approved to organize one of 10 Challenge Walks in the nation, Sandra immediately

joined the event committee as the Volunteer Coordinator. As a committee member, Sandra excelled! Volunteer recruitment and coordination is one of the most time-consuming and detail-oriented responsibilities one can manage. She created spread sheets, made phone calls, sent emails, and assigned volunteer duties. The weekend of the event, Sandra made sure her 150 volunteers were happy! She organized a Friday night briefing where she made sure each volunteer understood their responsibilities. She even put together care packages to show

her appreciation for their time! As a veteran Challenge Walker, Sandra understands the importance of foot care… especially after walking 20 miles, so she and her team created foot soak kits for every walker! Sandra also succeeded in securing sponsorships from Ruby Tuesday, Trader Joe’s, and 7-11. We are so fortunate that she is a member of the Challenge Walk committee. Congratulations Sandra!

This year’s corporate Service Award recognized a company that joined National MS Society family three years ago. Texas Roadhouse stepped up when asked if they would like to sponsor the 2007 Bike MS ride. They were pleased to provide a cookout at Camp Silver Beach for the cyclists when they finished riding the first 75 miles of the ride. 2009 marked their third year as a sponsor treating cyclists and volunteers to hot dogs and burgers with all the fixings! The Roadhouse staff is phenomenal; constantly making sure food is plentiful. They bring out their trailer and staff to cook over a hot grill and serve beer to thirsty cyclists! Thank you Texas Roadhouse.

VOLuNTEER

cONGRATuLATIONS TO OuR 2009 hAMpTON ROADS chApTER AWARD REcIpIENTS

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VOLuNTEER

Dennis bondi received the Volunteer of the Year Award. A volunteer whose relationship began with the Bike MS in 2007, Dennis Bondi registered as a cyclist and earned

Thousandaire Status for Bike MS, but didn’t ride! Dennis volunteered to drive a supply truck! After Dennis’ first year as a volunteer, we invited him to join the Bike MS event Committee as the Logistics Coordinator. He agreed! For the last two Bike MS events, Dennis has coordinated picking up supplies and loading the trucks in the week leading up to the ride, and any logistical issues that arose along the route. Additionally, Dennis worked with us the morning after the ride, cleaning coolers and unloading trucks. But Dennis didn’t stop with the Bike event! In 2008, we lost our Walk MS Logistics Coordinator to retirement! He moved away from Hampton Roads, so once again, Dennis agreed to coordinate logistics for the two Walks each year performing the same duties as he does for the bike ride. Because he has been so involved with loading trucks, Dennis has become acquainted with our offsite storage space. Realizing the need to organize the space to make loading and unloading easier, Dennis installed shelves and cleaned out any excess materials that we have collected over the years. In 2009, the Hampton Roads Chapter added the Challenge Walk event

to our growing list of fundraisers and Dennis again volunteered to be the logistics coordinator! Thank you, Dennis, for all you do!

The “Make Your Mark” Award is an annual award given to the person who has made the biggest impact on MS Awareness over the past year. The 2009 Award was presented to Denise clarke.

Denise believes having MS is a blessing. After being diagnosed at age 31, Denise and her husband decided not have any more children. She was happy to have her two boys and believed her family was complete. But months later, Denise learned she was pregnant. Always wanting a little girl, Denise’s dream came true. Now the Clarke’s are a family of five with their little girl, Faith.

Denise certainly does not like having MS and she deals with its effects every day. But in a way, this disease has been a gift to her. She truly believes she would not have her daughter if she had not been diagnosed. She also believes she was diagnosed because she has the means to do something about it!

She decided to create an opportunity to positively affect the lives of others with MS. Her goal: to raise awareness for the movement

CONTINUeD ON pAge 20


VOLuNTEER

CONTINUeD FROM pAge 19and raise money that will go towards finding a cure in a light-hearted, fun way. As the vice president of Care-A-Lot pet Supply, Denise has been working with pet supply vendors to create MS-branded items, the first being the MS Loofa Dog that launched in 2008 and raised $30,000 to fund MS research. Since then, Denise has created pet I.D. tags, dog cookies and her latest item- The MS Flappy! One hundred percent of the profits from Care-A-Lot’s MS line is donated to the promise 2010 Campaign. In 2009, $26,000 was raised for a total of $56,000 in two years Denise plans to launch new items indefinitely. As a result of her success, Denise was invited to speak at last year’s National Conference. Denise,

we can’t thank you enough for all you have done and have committed to do for others living with MS. Congratulations!

The Hampton Roads Chapter truly appreciates all of our dedicated volunteers. If you have free time during the week, we can use your help in office. We often have mailings that need to be prepared and events like the Bike MS, Challenge Walk MS, and Walk MS we need to gear up for. Volunteers are essential to our success! The movement begins here!

Get involved! Volunteer! For information on how you can help, contact our office at 757-490-9627.

bEcOME A MOVEMENT AMbASSADOR. inSpire. edUCate. moVe.

We know that so many of you in the Hampton Roads Community are people who want to do something about MS now… but don’t know what to do! You can become a Movement Ambassador!

The Movement Ambassador program is a way for you to help the National MS Society, and specifically, the Hampton Roads Chapter, spread the word about programs, research, and events in the area we live. We often get requests to make presentations but are unable to accommodate due to our limited staff and booked schedules. Our Movement Ambassadors can help us!

We will provide the Movement Ambassadors with tools and resources to make the best presentations possible. You even get to pick your “comfort zone”! If you’re a Bike MS or Walk MS participant

and would like to engage people to become involved in our events, that will be your area of expertise. If research is your interest, we’ll make sure you get all the information necessary to give a great presentation.

Becoming a Movement Ambassador prepares you to have formal and informal conversations about the Society and its mission. You will learn how to raise awareness about MS and the chapter, as well as how to engage others to join the movement.

Our Movement Ambassador Training will be in March and we would love for you to join us! If you are interested or would like more information, please contact Shannon Rice at [email protected] or Robyn Hirsch at [email protected].

ADVOcAcY

Join tHe moVement. Create CHange. bE AN MS AcTIVIST.Many public policies and programs greatly influence the health, independence, and well being of people affected by MS. The National MS Society and MS advocates across the country give voice to people with MS. We relentlessly advocate and engage activists on every level, from local community issues to Federal government concerns.

jOIN ThE MOVEMENT!

Even if you only have a few minutes, you can be an MS activist. To learn more about how you can advocate for change view our MS Advocacy Toolkit at nationalMSsociety.org>get Involved> Take Action>MS Activist Toolkit.

When you become an MS activist:

The National MS Society will look to you to •

serve as an activist for the interests of people with MS.

We will arm you with the information and •

tools you need to fully understand the issues, talk about them with others, and take action.

We will send you an MS Action Alert when •

an important issue or piece of legislation calls for your immediate attention.

We will send you our monthly Federal •

Focus on Advocacy e-newsletter—an update on activism successes, timely legislation, and emerging issues.

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STOckING STuFFERS? hANukkAh GOODIES?

Keep the Movement in your holiday celebrations. Visit the Society store (nationalMSsociety.org and click the window at bottom left). We have hats and mugs, eco-friendly shopping bags, t-shirts, note cards, Care-A-Lot pet toys and more. prices range from $7.50 to $19.50. Or visit Art to Shirt at artoshirt.net/servlet/the-MS-Artists/categories for unusual t-shirts by artists living with MS. Most have the motto: “MS: Find the Cure.” price: $14.95. Let your holiday gifts raise money and MS awareness.

hOLIDAY pARTIES


hELp & SuppORT

FINANcIAL ASSISTANcE pROGRAMThe National MS Society is dedicated to reaching out and responding to individuals, families, and communities living with MS and to meeting them at their point of need. Among the many services and programs the Chapter provides is our Financial Assistance program, a multi-faceted program that helps to address the specific challenges that living with MS can cause.

please note that the Chapter only provides short-term, limited, and reasonable financial assistance to individuals with MS.

Financial Assistance will be considered for the following categories:

∫ general emergency Assistance

∫ Independent Living Needs∫ Home & Vehicle

Modifications

∫ Mental Health Needs∫ physical Health Needs∫ Wellness programs∫ Durable Medical equipment

/Assistive Technology

The African American Inspirational Group will hold its Holiday party this year at golden Corral (1123 W. Mercury Blvd., Hampton VA) on December 3 at 1pm. The party will replace the normal group meeting for December. For more information contact Veegee at (757) 539-0139.

The Suffolk Group will hold its Holiday party this year at Kelly’s Tavern (119 W. Constance Road, Suffolk VA). The party will replace the normal group meeting scheduled for December 16 at 6:30pm. For more information contact Willie Ann at (757) 539-0139.

The Williamsburg Group is hosting a Holiday party, which will be held on Wednesday, December 9 at 5:30 pm at the James City County/Williamsburg Community Center (5301 Longhill Road, Williamsburg, VA). The whole family is invited to come and enjoy an evening of fun and good cheer. please bring a finger food to share. For more information, contact JoAnn at (757) 220-0902.

The peninsula Evening Group is hosting a Holiday party, which will be held on Thursday, December 10 at 5:30 pm at Sentara Complex Hospital, Conference room C. Those with MS as well as their family and friends are welcomed to attend. Food is being catered; therefore, RSVp is required. please contact Diana at 757-722-2492 to RSVp.

Those interested in learning more about the assistance that is available should contact the Chapter at 757-490-9627 or 1-800-FIgHTMS.

TO LEARN MORE

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December 2, 2009Gloucester Group1st Wednesday of the month @ 10 amRiverside Wellness and Fitness Center 7516 Hospital Drive, gloucester, VA

December 3, 2009**African American Inspirational Groupholiday partyGroup normally meets:1st Thursday of the month @ 10:30 amHampton public Library936 Big Bethel Road, Hampton, VAFor more information contact D’Andre at (757) 660-3455 or [email protected].

December 8, 2009Virginia beach Morning Group 2nd Tuesday of the month @ 10 amKempsville public Library832 Kempsville Road, Virginia Beach, VAFor more information contact peteat (757) 497-6594 or [email protected].

December 9, 2009**Williamsburg Group holiday partyGroup normally meets:2nd & 4th Wednesdays of the month @ 5:30 pm James City County/ Williamsburg Community Center 5301 Longhill Road, Williamsburg, VA For more information contact JoAnnat (757) 220- 0902.

December 10, 2009**peninsula Evening Group holiday party Group normally meets: 2nd Thursday of the month @ 5:30 pmSentara Careplex Hospital (York River entrance, Conf. Rm. C)3000 Coliseum Drive, Hampton, VA For more information contact Dianaat (757) 722-2492.

December 21, 2009Elizabeth city Group 3rd Monday of the month @ 2:30 pmplease contact Melvin at (252) 335-9158 for group location.

December 16, 2009**Suffolk Group holiday party Group normally meets: 3rd Wednesday of the month @ 6:30 pmMagnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA For more information contact the Willie Ann at (757) 539-0139.

cANcELLED FOR DEcEMbER:

chesapeake Group 3rd Tuesday of the month @ 7 pmLifestyle Fitness Center at Chesapeake general Hospital 800 N. Battlefield Blvd., Chesapeake, VAFor more information contact the Margie at (757) 482-3247.

Southside Group 4th Wednesday of the month @ 3 pmVirginia Beach public Library 4100 Virginia Beach Blvd.Virginia Beach, VA

Williamsburg Group 4th Wednesday group Meeting is cancelled.

hAMpTON ROADS chApTER SELF hELp GROup LISTINGFor more information on any of the following groups contact (757) 490-9627 unless otherwise noted.**Please see Holiday Party listing for more information.

Find someone to chat with on the web at www.msworld.org

hELp & SuppORT

chApTER STAFF Sharon L. Grossman, MScIRChapter president and Chief professional [email protected]

Robyn M. hirsch, MScIRprograms and Services [email protected]

karla MccarraherOffice [email protected]

Michelle R. DerrVice president of Finance and [email protected]

Shannon R. RiceDirector, Community [email protected]

kathryn G. WhitlockDirector, Special [email protected]

A copy of our organization’s financial statement is on file with and available through the State Division of Consumer Affairs in the Department of Agriculture and Consumer Services, upon request.

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Norfolk, VAPermit #162

hampton Roads chapter

760 Lynnhaven Parkway Suite 201Virginia Beach, VA 23452

DID YOU KNOWTHAT orange IS THe

NeW gReeN?At least at the National MS Society

it is! Help us “go Orange!” by requesting the MS Connection

as an e-newsletter sent directly to your Inbox! It will be in .pdf format and will

have all of the same information that you currently receive. If you would like

to help us conserve, send an email to [email protected] with the subject

line “go Orange!”

Documents

Winter 2009 MSConnection