2010 Winter MSConnection

MOVING TOWARD A WORLD FREE OF MS | Winter 2010

INSIDE tHiS iSSUe

Hampton roadS CHapter

moscow Balletpage 3

Living well with mSpage 4

adventures in Cholesterolpage 5

Challenge Walk mS page 10

continued on page 12

Health care reform is now law, so the name of the government’s official Web site has changed. Visit healthcare.gov (not healthreform.gov). While many regulations remain to be written, not everything you may hear about the law is accurate. check the official Web site.

a section on this site allows comparison shopping for health insurance. it links to what’s available for each state—private plans, public programs, and community health-care services. prices are being posted as they are set, so users are invited to check back often for updates.

if you currently have employer-based or individually-purchased insurance that works for you, you don’t need to do anything. about 50% of americans living with MS have this kind of coverage. the affordable care act is designed to protect people from some potential insurance abuses. these changes are being call “the patients’ Bill of Rights.”

as of thursday, September 23, 2010 (the six-month anniversary of the patient protection and affordable care act -ppaca), here are some

of the key provisions that became effective for all new or renewed employer-based or private plans:

CHiLdren insurers cannot deny coverage to children • (under age 19) due to a pre-existing condition or special health care need.*

Young adults can remain, join, or re-enroll in • their parent’s health insurance plan until their 26th birthday, even if married or no longer living at home. Young adults who are already eligible for their own employer’s health coverage may not participate in a parent’s insurance plan.

patient proteCtionS and inCreaSed aCCeSS to HeaLtH Care

insurers cannot rescind, or drop a person’s • health care coverage when they get sick.

New• private insurance plans (that is, policies first initiated on or after September 23, 2010) are required to cover some preventative services, such as certain vaccines and screenings, without a deductible or co-payment.*

QuESTIONS AbOuT HEALTH INSuRANcE cHANGES?

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.

4th tuesday of the Month at 5:30 pm** neurosciences conference Room Riverside Medical office Building 12200 Warwick Blvd. newport news, Va 23601

**the group will not meet in november or december due to the holidays. Regularly scheduled meetings will resume on January 25, 2011.

the group is offered by Riverside center for neurosciences and meets on an ongoing basis.

For more information call (757) 875-7880.

I AM. I cAN. I WILL.™

CanDoMultipleSclerosis is pleased to offer a new webinar series. this informative and accessible program for people with MS and their support partners is designed to help individuals see beyond their MS by gaining the knowledge and tools to adopt healthy lifestyle behaviors, actively co-manage their MS and live their best lives. (this series is offered at no charge.)

LaSt CaLL in tHe SerieS: december 14, 2010 8-9pm Relationships/communication

to register for this call, visit www.mscando.org. For questions or more information call or email Maureen Martin with CanDoMultipleSclerosis at 800-367-3101 ext. 1291 or [email protected].

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.

© 2010 national Multiple Sclerosis Society, Hampton Roads chapter

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EVENTS

Silver: Forbidden city

bronze: atlantic Bay Mortgage group

Beach/Barton Ford clark nexsen Foundation

Ruth’s chris Steak House- town center tJ MaXX

Williams MullenWe’d Also Like to Thank:

Sandler center eclectic Florists and gifts

MOScOW bALLET PERFORMANcE OF THE GREAT RuSSIAN NuTcRAckER TO bENEFIT THE NATIONAL MS SOcIETY!YoUr CHiLd CoULd Be in tHe SHoW!pre-SHoW reCeption SponSored BY rUtH’S CHriS Steak HoUSe

When: tuesday, december 16, 2010 5:00 pM - Ruth’s chris pre-Show Reception at the Sandler center 7:00 pM - performance Where: Sandler center for the performing arts Tickets: $100 ($50 tax deductible) Includesoneofthebestseatsinthehouse,Ruth’sChrisPre-ShowReceptionandprivatefullcashbar.

MANY THANkS TO OuR SPONSORS:

the national Multiple Sclerosis Society, Hampton Roads chapter

is pleased to partner with the Moscow Ballet for a second year for their 2010 great Russian nutcracker! Join us at the Sandler center for the Ruth’s chris Pre-Show Reception to enjoy heavy hors-d’oeuvres, then experience the only great Russian nutcracker performed by an international cast featuring world class ballerinas!

What’s even more exciting is that you have an opportunity for your favorite child to participate in the show! For every two tickets you purchase by december 8, 2010, you will be entered in a drawing for your child to ride in the sleigh across the stage! 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.

Join us for some holiday cheer!

LIVING WITH MS

LIVING WELL WITH MS

people live with MS, but is it possible to live well with MS? Many people do. they learn ways to address issues central to their overall well-being.

“Wellness is not dependent on not having a disease—you can have a health issue and still live well. You can learn strategies to live optimally with the disease,” said Stephanie Fisher, Ma, executive director of the Marilyn Hilton MS achievement center at ucLa, a joint program of the ucLa department of neurology and the Southern california chapter of the Society.

the Hilton center recently shared its experiences as a leader in the wellness field. Here are some of what they view as core components of wellness.

• Exercise. physical activity blunts the impact of MS by improving the body’s overall condition—increasing strength, range of motion and cardiovascular health. “We know exercise is beneficial, within one’s personal limits,” said denise nowack, Rd, executive vice president, programs and Services, Southern california chapter. Working with a health-care professional will help determine what and how much exercise works for you—whether it is tai chi, yoga, aquatic exercises, bicycling, or something else.

• Eating well. “good nutrition is important, as is managing weight, since extra weight adds to fatigue,” nowack added. there are lots of

resources on eating healthily (and deliciously). Visit nationalMSsociety.org and search for “nutrition” to find recipes, meal planning and information on nutrients important to people with MS.

• knowledge. a current and accurate understanding of MS, its symptoms and treatments can help people navigate medical decisions and get more from their partnerships with health-care professionals. However, there’s lots of misinformation both online and off. call us or visit nationalMSsociety.org to start finding up-to-date and helpful resources.

• Emotional and spiritual resources. the grief and sense of loss that a diagnosis brings up are powerful factors. paying attention to one’s inner self can help people learn “to recognize the things that drain them emotionally and how they can minimize them,” nowack said. “people can develop practices to carry them through their lifetime.”

For more information on all the aspects of living well with MS, visit nationalMSsociety.org/healthyliving or call us at 757-490-9627.

Knowledge is Power is a six-week, free, at-home educational program

for people who are newly diagnosed. Mail or e-mail formats.

To register, call 1-800-344-4867,

or visit nationalMSsociety.org/knowledge.

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ADVENTuRES IN cHOLESTEROLBY katHerine SHaW

i’ve always considered my cholesterol level a source of pride. at a happy 150ish for the last 25 years, i was sure that cholesterol would never be a concern. i have MS. isn’t that enough?!

So last year, i go to the doc for a check up. Blood work comes back with a cholesterol level of 210. But the doc says no big deal. Since i didn’t fast beforehand, it’s probably nothing. But i made sure to fast this year and my level was 210 again! What? i haven’t gained weight, or done anything to deserve this. i don’t get it!

on a visit to my MS doc, i whip out my blood tests and ask if this ridiculous jump could be related to my MS.

Both the doctor and the nurse smirk.

“What?” i ask, feeling left out of the joke.

“You’re younger than we are, but not by much. it’s called aging,” explained the doctor. “and no, you can’t blame it on the MS.”

Since that time, i’ve become a better listener when my middle-aged friends complain about their health. they’ve become a wonderful reality

check for me. as it turns out, i can’t blame the reading glasses on my MS either. go figure.

However, in thinking through this little cholesterol adventure, i have to say that i’m pleased with the outcome. Better normal aging than the progression of disease!

LIVING WITH MS

PREVENTION cOuNTS people with MS face the same risks of cancer, heart disease and stroke as everyone else. For a list of screening and vaccinations recommended for your age group, download the Preventive care Recommendations brochure at nationalMSsociety.org— or call us for a copy.

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StaY tUned For inFormation aBoUt tHe

2011 LINkS TELEcONFERENcE SERIES

each year the Hampton Roads chapter collaborates with other chapters across the

east coast to conduct a teleconference series for clients with MS and their families entitled

“LinKS.” Whether you just received a diagnosis of MS or have been living with it for a long time—this series will “LinK” you with information and tips on how to

maintain your quality of life in the years ahead.

details for this teleconference Series, to be held april through May,

will be coming as we start the new year!

NEWS

GILENYA IS APPROVEDtHe era oF oraL drUgS BeginS

on September 22, the u.S. Food and drug administration approved fingolimod capsules for reducing the frequency of MS attacks and delaying the accumulation of physical disabilities in people with relapsing forms of MS. this is a milestone in MS therapy.

the new medication, under the brand name gilenya (pronounced Jil-en-ee-ah), will be available as a “first line” treatment, meaning there are no recommendations for people to try other MS therapies before trying gilenya.

gilenya is a new approach to controlling MS. it blocks receptors on some of the same t and B immune cells that have been implicated in causing MS damage. the drug causes some of these cells to remain in lymph nodes, inhibiting them from migrating into the brain or spinal cord.

a SeCond oraL mS med iS Under reVieW

Last July, the Fda agreed to give “priority review” status to eMd Serono’s cladribine tablets with the hope of an approval decision this december. cladribine is a chemotherapy drug that is used to kill t and B cells in the immune system and thus slow down the attack on myelin.

the arrival of therapies that do not require regular injections greatly increases options – especially for people who are not doing well on their current drug or who have deep aversion to needles.

an inFormed CHoiCe

While oral drugs have long been a goal for researchers, the choice will not be quite as simple as putting down a needle and popping a pill. gilenya is a powerful drug with potential side effects and risks as well as possibilities. the label carries warnings about these, including decreased heart rate after the first dose. the drug also increases risks of certain infections. in the clinical trials, two deaths from herpes infections occurred in people who took gilenya at a higher dose than the level that has been approved. a number of pretreatment tests will be required and people will be monitored for potential lowered heart rate for six hours following their first dose. on the up side, clinical trial data suggest that gilenya has a stronger impact on reducing relapse rates than a standard drug, avonex, and also delays accumulation of physical disability.

For more details, including Frequently asked Questions, and references to the clinical trials, please visit nationalMSsociety.org or call us for a printed copy of the September 22 news Bulletin.

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

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RESEARCH

WHY DOES MS RESEARcH cOST SO MucH?

Fifteen years ago, MS was a very different disease. Some symptoms could be treated, but there were no drugs available to treat the disease itself. that isn’t so today, thanks to MS research breakthroughs. Still,

the need for better treatments remains pressing and MS research continues toward this goal.

there’s no doubt that such research comes at a cost. Bringing an MS drug from idea to reality can cost over a billion dollars.

What exactly makes MS research so expensive?

We asked timothy coetzee, phd, president of Fast Forward, a research subsidiary of the Society established to fast-track research into MS and help bridge the gap between research findings and the companies that will manufacture and market the therapy.

“You pay scientists to design and execute research plans, you pay technicians to analyze results,” dr. coetzee told us. this work requires highly specialized equipment in physical plants that the Fda has to approve. “You’re not doing MS research in your garage,” he pointed out.

after all the lab and animal studies, many

promising therapies will fail to prove out. For those that do, more time-consuming and expensive tests must be performed to ensure that a new drug is both safe and effective for people.

testing MS drugs is particularly complex, dr. coetzee noted. a blood pressure pill either lowers blood pressure or doesn’t. But with MS, he continued, “We’re trying to measure what happens to a person’s disease course, which you can usually see only over time. changes in MS are slow and subtle. all that time adds to the cost.”

the Society invests in university-based research across the world. But that research can only become reality — a medication available for physicians to prescribe — with the involvement of the private sector.

“in today’s environment,” dr. coetzee said, “there’s no guarantee that even good discoveries will actually make a difference in people’s lives because of the expense involved in doing needed

trials. Fast Forward wants to move the ball down the field a little faster. We don’t want to leave it to chance.”

For example, amplimmune, a startup pharmaceutical company in Rockville, Md., is

currently testing a drug called amplimmune-110 for MS and other autoimmune diseases, with support from Fast Forward.

“We matched amplimmune up with MS researcher Stephen d. Miller, phd, of northwestern university,” dr. coetzee said. “dr. Miller discovered new ways the drug works that amplimmune’s scientists weren’t aware of. We now hope clinical trials can begin within the next couple of years.”

RESEARcH

dr. timothy coetzee heads the Society’s research subsidiary, Fast Forward, LLc

“You’re not doing MS research in your garage.”

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ANNOuNcEMENTS

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YEAR-END GIVING pLan CareFULLY For tHe BiggeSt impaCtgiving before year-end packs a double punch. First, you will be supporting the works and dreams of the national MS Society, Hampton Roads chapter. Second, tax incentives may enable you to do more than you realized possible, even improving your own financial position in the process. the availability of the income tax deduction helps a charitable person be even more charitable.nothing is as simple and direct as giving cash. You can make an unrestricted donation, and we will use the gift to meet our greatest current need. or you may designate a gift for a specific purpose. a gift of cash may be deductible up to 50 percent of your adjusted gross income, and gifts in excess of 50 percent may be carried over as deductions into the next five years.Stocks or other investments that have grown in value and that you have owned longer than one year can become a substantial gift with a low net cost to you. You receive a charitable deduction for the donation, which is based on the stocks’ fair market value on the date of the gift. and, there is a bonus—you avoid all federal capital gains tax that would otherwise be owed on a sale of the assets.if you are issuing a check, the effective date of your contribution is the date it is hand-delivered or mailed. Stock that is held in electronic form can be transferred through your broker to an account in the chapter’s name. the value and date of the gift are determined by the date of the transfer, which is generally the date the securities are received in our account. For more information please call Sharon grossman at 757-490-9627 or email her at [email protected]. We can help you plan and implement a year-end charitable gift that takes advantage of valuable tax benefits and reflects your generous spirit.

NOW AccEPTING 2011 ScHOLARSHIP APPLIcATIONS!

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.

applications for the 2011 Scholarship program will be accepted until January 14, 2011. For guidelines and application information, visit nationalMSsociety.org/scholarships.

alexis porter, 2010 Scholarship Recipient

SuPPORT AND ADVERTISING OPPORTuNITIES

this space available for you or your business or company!!

Help the Hampton Roads chapter share important information about research,

programs, services and events by supporting the MSConnection and/or the

MS Update newsletters.

You may “sponsor” the entire issue, or take out a full, half or quarter page ad. promote your

business or honor or memorialize someone spe-cial…the opportunities are endless!

contact Robyn M. Hirsch at 757-490-9627 or [email protected] to learn more.

HOLIDAY PARTIESthe African American Inspirational Group is hosting a Holiday party on december 2 at 11 am. the party will replace the normal group meeting for december. For the holiday party location or more information, please contact Veegee at (757) 746-2103 or [email protected].

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 15 at 6:30 pm. For more information contact Willie ann at (757) 539-0139.

the Williamsburg Group will hold their Holiday party on Wednesday, december 8 at 5:30 pm at doraldo’s Restaurant (1915 pocahontas trail, Suite F-1, Williamsburg, Va 23188). the whole family is invited to come and enjoy an evening of fun and good cheer. For more information or to RSVp, contact Joann at (757) 220- 0902.

the Peninsula Evening Group is hosting a Holiday party, which will be held on Wednesday, december 15 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.

THANkS FOR WALkING!thanks to all walkers who joined the movement to create a world free of MS on october 2 at peninsula town center and october 3 at Mt. trashmore. You made a difference in the lives of the over 2,800 area residents and their families who live with the challenges of this disease every day.

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 24-25, 2011.

EVENTS

THANk YOu TO OuR SPONSORS:

Statewide Sponsor: atlantic Bay Mortgage group

Platinum Sponsors: 94.9 the point and admobile

Doggies Got Talent Sponsor: care-a-Lot pet Supply Warehouse

Food Finish Sponsors: Forbidden city, Jo Jack’s espresso Bar and

cafe, Super donut, target

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EVENTS

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crowne plaza Williamsburg Fort MagrudereMd SeronoRuby tuesday

Rita’s italian iceonyx audioVisual

eagle 97.3empower information Systems

casey auto grouptidewater physical therapy

THANk YOu TO OuR 2010 SPONSORS:

the Second annual Historic Williamsburg challenge Walk was off to a grand start with the rousing tunes of the Yorktown Fife and drum corps and the inspiring words of delegate Jeion Ward who represents the 92nd district in the Virginia general assembly. del. Ward even walked a ways with the challenge Walkers!! imagine the more than 100 walkers from all over the country strolling down the duke of gloucester Street in colonial Williamsburg…what a glorious sight!! that is what the 2010 Historic Williamsburg challenge Walk looked like on the beautiful Sunday morning of September 26.

one of 10 challenge Walks held across the country, the Historic Williamsburg challenge Walk hosted by the Hampton Roads chapter was

a tremendous success, raising over $200,000 to fund research and chapter programs and services. thanks to the more than 100 volunteers and crew members who catered to the walkers every need, smothering them in southern hospitality!

Why don’t you join us September 10 & 11, 2011 for the experience of a life time? challenge Walk MS 2011 is open for registration which is a discounted $35 through december 31, 2010. We’ll be touring Virginia’s Historic triangle once again and look forward to another fabulous event. to register go to www.fightMS.com.

HISTORIc WILLIAMSbuRG cHALLENGE WALk MS 2010 A HuGE SuccESS!

HISTORIc WILLIAMSbuRG cHALLENGE WALk MS 2010

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EVENTS

NEWS

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choice of primary care doctor is protected; • women are allowed to go directly to their oB/gYn without a referral.*

insurers are prohibited from charging more for • emergency care outside of a plan’s network.*

proteCtion dUring CataStropHiC iLLneSS

Health insurance companies can no longer • place lifetime caps on coverage.

insurers can have annual coverage limits that • are no lower than $750,000. (this is the first step toward prohibiting any annual limits on essential benefits.)*

* note that the actual effective date for some of the new rules will vary depending on when a health plan was initiated or renewed. Most employer-based plans renew at the turn of the year, meaning that these protections kick in on January 1, 2011, for most people. Some rules apply only to newly sold plans and not ‘grandfathered plans.’ a grandfathered plan is any existing health insurance plan or health insurance coverage in which a person was enrolled on or before March 23, 2010, the date the patient protection and affordability act was enacted. check with your benefits administrator or the Virginia Bureau of insurance for more information about how the new protections

continued FRoM coVeR

go to tHe SoUrCe:U.S.DepartmentofHealth&HumanServicesWebsiteforconsumers

healthcare.gov cuidadodesalud.gov cms.gov medicare.gov

HeLpFUL time LineS SHoWing CHangeS to Come:TheKaiserFamilyFoundation: kff.org/healthreform/8060 .cfm.

FamiliesUSA: familiesusa .org/assets/pdfs/health-reform/reform-in-the-first-year.pdf (For details about 2010.)

For perSonaL CoUnSeLing:NationalMSSocietyinsurancespecialists:

call 757-490-9627 and ask for an MS navigator.

tHe Big piCtUre:HealthReformGPS – a joint project of george Washington university’s Hirsh Health Law and policy program and the Robert Wood Johnson Foundation. See especially their “Reform overview.” Healthreformgps.org.

ConsumersUnion: consumerreportshealth.org

AARP’sUsersGuidetoHealthCareReform: http://www.aarp.org/health/health-care-reform/info-04-2010/a_user_s_guide_to_health_care_reform.html

TheNationalMSSociety:nationalMSsociety.org/healthcarereform

MORE RESOuRcES ON THE AFFORDAbLE cARE AcT

NEWS

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affect your health coverage. the Virginia Bureau of insurance can be reached at 1-800-552-7945 or [email protected].

pre-exiSting Condition inSUranCe pLan if you currently have no insurance and have been uninsured for six months or more, pre-existing condition insurance plans (pcips) are starting up in every state and no one can be refused coverage due to their health. But until the tax breaks and help that start in 2014, you may find the cost a problem. call us to explore this and other options.

pLanning For 2011as usual, people on Medicare can switch their plans between november 15 and december 31. Review your choices carefully. government subsidies for Medicare advantage plans are being reduced, and some of these insurers will

respond by raising prices or limiting benefits. traditional Medicare benefits are being increased, not limited. Mammograms, colon cancer screening, vaccinations and more will be covered in full with no co-pays or deductibles.

mediCare part d and tHe donUt HoLethe “donut hole” is still with us, but in 2011 name-brand drugs including biologicals will be offered at 50% off while the individual is in the gap. generics may be even more steeply discounted. check the list of covered drugs (the formulary) in any plan you are considering. as before, drugs for MS symptoms management prescribed “off label”—as many are—will not be discounted. in addition, older adults, who are enrolled in Medicare part d and reach the donut hole this year, are being issued a $250 rebate to help cover costs of medication.

INTERESTED IN LEARNING MORE?understanding all of the nuances and provisions of the new health care reform bills can be

difficult. the Hampton Roads and central Virginia chapters are partnering to host an MS Activism Reception the evening of December 10 to help you learn more about how the

patient protection and affordable care act will impact people with MS. check out our website, www.fightMS.com, for additional information about the reception or

to register for this free event.

FLIP-FLOP WORkSHOPS bY THE SEASHORE

For the past two years, the Flip-Flop Workshops by the Seashore, sponsored by the ziMS Foundation, have been a Huge success! unfortunately, due to unforeseen scheduling conflicts we will be unable to hold the Workshops this year. We know that the sense of community and friendship that was fostered is one of the most noteworthy things of this program; therefore, we plan to hold another Flip-Flop Workshops by the Seashore Weekend Retreat in 2012 so that old friends can catch up and new friends can meet.

ADVOcAcY

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 supported by 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.

(d-oH)

(R-tX)

TAkE AcTION

if 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.

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TAkE AcTION FROM HOME Sign Up to partiCipate in oUr 2ND ANNuAL VIRTuAL ADVOcAcY DAY!on January 24, 2011, the Virginia chapters of the national MS Society will host our annual Legislative action day. during this Legislative action day, MS activists will gather in Richmond to meet in-person with their state legislators. However, we need your help to reinforce our advocacy message! only a few volunteers will be able to join us at the state capitol, but you can use online resources and social networking to participate with them without leaving your home! Join volunteers across the state and share your story; lend your voice to advocate for legislation that increases the quality of life for Virginians living with MS.

Here are Some WaYS YoU Can partiCipate in oUr VirtUaL adVoCaCY daY:

Follow MS activists on twitter as they meet with legislators in Richmond. • use this link to connect to twitter: www.twitter.com/vamscanHelp grow the MS activism community on Facebook • use this link to connect to Facebook: http://bit.ly/9sqomd tweet about MS on your own twitter page.• update your Facebook Status with facts about MS.• Share your MS story on your personal blog.• Send an email to your state Senator or delegate.• call your state Senator or delegate to talk about an issue you are passionate about.•

clients who register for our Virtual advocacy day will receive sample Facebook statuses and tweets, sample blogs that can replicated, and email templates that can be used to communicate with legislators. in addition, you will have the opportunity to dialogue with the national MS Society’s Virginia Statewide advocacy Manager about policy and legislation.

Join this virtual movement and increase our impact on Virginia legislators by registering today! Register online via our website, www.fightMS.com, or by calling 757-490-9627.

if you need assistance setting up a twitter, Facebook page or Blog, please do not hesitate to contact Virginia advocacy staff at [email protected]

THANk YOu FOR bEING AN MS AcTIVIST!

ADVOcAcY

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EVENTS

bIkE MS

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EVENTS

VOLuNTEER

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 28, 2010: 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.

Damon Radcliffe received the Outstanding committee Member Award. damon registered to ride with “Heroes Live Forever” bike team… but volunteered to work security at camp Silver Beach instead! He has

graciously continued in this role ever since.in 2009, when we organized our first challenge Walk in the Historic triangle, we learned that damon grew up in the Yorktown/Williamsburg area and had many contacts. He helped to secure the college of William and Mary for our final mile and finish! the college staff knew and respected damon, so they were happy to accommodate his request on the chapter’s behalf. all of damon’s assistance landed him an official spot on the challenge Walk committee. using all of his contacts, he worked to improve the Sunday route, informed the local police departments of our event, and provided a generator for our use at the pre-finish. thanks damon!

this year’s corporate Service Award was awarded to Forbidden city who originally started the team Fortune’s cookie for Walk MS because the owners’ daughter was diagnosed with MS just a month prior to the 2007

event date. in their second year participating, Forbidden city hosted “Mu Shu for MS” where 100% of the proceeds were donated to the Walk MS. this annual fundraiser continues to grow in attendance and in donations! But that was not enough for John and emily crell, Forbidden city owners. the crell’s believed they could provide a more memorable Walk MS experience for participants by donating chinese Food, so they did! Forbidden city signed on as the food sponsor for the 2009 Mt. trashmore Walk MS event treating participants and volunteers to a fabulous meal! the sponsorship was duplicated in 2010 and this year Forbidden city also hosted the Walk MS team captains’ Rally. in addition to supporting our walk, Forbidden city generously donated as a Bronze Sponsor to the first annual Moscow Ballet Benefit performance of the great Russian nutcracker that was held in december 2009 at the Sandler center. the event was such crowd pleaser that they decided to increase their donation to a Silver Sponsorship this year! if you ever enjoy lunch or dinner at Forbidden city in Virginia Beach make sure to thank them for their generosity!

cONGRATuLATIONS TO OuR 2010 HAMPTON ROADS cHAPTER AWARD REcIPIENTS

18 | Join tHe moVement: nationalmSsociety.org

The 2010 Volunteer of the Year Award goes to James Smith: a familiar face to the Hampton Roads chapter since 1998 when he began participating as a cyclist in our Bike MS event. James not only raises the minimum, but achieves

thousandaire Status each year he participates; whether as cyclist or a volunteer.in 2007, James was participating in dominion power’s Volunteer program and contacted the chapter to see if we needed volunteers. While reorganizing our event supply room, he found the map outlining our eastern Shore bike routes and decided that’s where he wanted to help! James redesigned cue sheets and tweaked the routes, making them more efficient and easier for our route medics, support teams and cyclists alike. He also worked as a Bike MS crew member that year driving one of our three supply trucks, and witnessing the behind the scenes action for the first time. James joined the Bike event committee in 2009 as our Route Manager and continues to make improvements.Because of his position as an engineer working for dominion Virginia power in electric distribution Reliability, Bike MS 2011 will feature a junior dominion power command center that will house a special team, hand-picked by James, to monitor the ride and deal effectively and efficiently with any issue that might arise. thank you James for all the many hours of serious, dedicated work you have committed to Bike MS.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 2010 award was presented to Teresa crowson.in 2007, teresa created the Walk MS team, “On the Flip Side.” teresa recruited 31 team members and raised $5,239! in three years, the team has raised

$12,730! as a result of her hard work she was invited to the national team captains’ Rally in 2008 in chicago. teresa is not only a fabulous team captain, but is also a member of the government Relations committee and attends the public policy conference in Washington, d.c. and Lobby day in Richmond advocating on behalf of those living with MS in Hampton Roads. this year, the Historic Williamsburg challenge Walk MS became a crowson family affair! teresa’s husband doug serves as the Medic Support Manager on the planning committee. teresa joined the committee and secured enough wine for two opening night receptions. teresa’s daughter, Blake, joined in with her Warwick High School Field Hockey team to volunteer along the route and to cheer on the walkers as they completed their journey. next year, teresa and Blake plan to walk! teresa, we can’t thank you enough for all you have done and have committed to do for others living with MS.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!

VOLuNTEER

GET INVOLVED! VOLuNTEER! FoR inFoRMation on HoW You can HeLp, contact ouR oFFice at 757-490-9627.

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Dorothy Astrum Lucille Loesche Barbara Wagner

Alice boswell Michaela Kapilla

William A. cashatt Lawrence & Mary conner

David charboneau Lauren alwan Jeff Leong

Mills J. cullins truitt Bonney Rena costner & Family Jeri Long Mary Luter Janice Reed Randy & Mary Louise tinkham

Mary Margaret Floyd Barbara Levy

“Fergie” & “Freckles” Michael & Sharon grossman

Agnes Gallo Marianna Williamson

Robert Gordon donald & Janie aycock Jack & Maureen Boland Joann daus charles & carolyn etzler Happy eagles Retirement group

Edith Hatch Linda Mathews

John David Hundley Mel & gretchen allmond paul Francois carla grant Robert & Sharon Hundley international Business Machines corporation Lankford & Barbara Malbone John Mandic Shirley Mcclaskey peter & patricia nishnick Bridget overstreet past Masters of Bayside Masonic Lodge #218 Robert & ellie Rewald Michael Rogers gary Smart Matthew & Sarah tripod

Ronnie king, Sr. Mr. & Mrs. emmett Bunch

Nicholas kitsas audrey Kirby

Sonny & Helen Morgan Bob & Wanda gibble clarissa odom

Donald Mohr Janice Mohr dorothy titcomb

barbara G. Powell Joanne Bangley Michael Brinkley William chorey dorothy edwards ernie emerick daniel & diane Fratalia Frank & Jean Jordan Helen Hopkins Robert & Robin Morris alma poole carolyn Rountree Shelton Webb, Jr

Mona L. Ridout daniel & Lois Ridout

Janice Reta Roersma William Matonis

Sandra Roth Richard & Miriam Miles

Mandy Schmidt dennis allion tom Schmidt

MEMORIAL GIFTS & TRIbuTES HONOR LOVED ONESthe Hampton Roads chapter of the national Multiple Sclerosis Society would like to sincerely thank the generous contributors who made memorial and tribute gifts between May 2010 and october 15, 2010. the memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.

MEMORIAL GIFTS

DONATIONS

if you would like to make a memorial or tribute gift,

please contact the chapter at 757-490-9627

or visit www.fightMS.com20 | Join tHe moVement: nationalmSsociety.org

MEMORIAL GIFTS & TRIbuTES (CoNTINUeD)

TRIbuTE GIFTS:Aunt bobby & uncle boodie Robert & abbie Korman

Terry bushey cook William & Julia george

Jesse S. Fitterer patricia Wilson

Yvette Ghormley nancy arnold

Marlene Leader Stacie Wittenberg

claudia Pietras Kristen Monroe

Tony E. Reid Lois Reid

Wayne G. Souza Harold Friedman

Michael Wall alvin & nancy Wall

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Please note that the Chapter office will be closed for the holiday season starting December 17 and will reopen January 3, 2011.

ANNOuNcEMENTS

HELP DRIVE MS AWAY bY DONATING YOuR VEHIcLE TODAYthe donation of your car, truck, motorcycle, or trailer can be used to help fund critical research for multiple sclerosis. We make donating your vehicle simple.

kEY POINTS unlike other auto donor programs, the national MS Society receives 100% of the proceeds from the sale of your vehicle. proceeds fund programs and services for people living with MS and research that will get us closer to a cure.

Your vehicle donation is tax deductible. the national MS Society is a non-profit, 501 (c) (3) corporation, so your donation is tax deductible to the extent allowable by law. please refer to your tax professional for specific details.

IGNITING THE PROcESS

call our toll free number • 1-877-672-8864 or submit the electronic donation form found online at www.AuTOS4MS.org.

Have your title in hand when you call so • we can get specific information about the vehicle.

Fax a clear copy of your title, both front and • back, to 1-877-672-2774.

once we receive the copy of your title, your • donation will be processed.

a towing company will contact you to • schedule vehicle pick up.

a receipt will be mailed to you after the • completed sale transaction of the vehicle.

For answers to all of our frequently asked questions, please visit www.AuTOS4MS.org or call 1-877-672-8864.

22 | Join tHe moVement: nationalmSsociety.org

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 February 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].

GET INVOLVED

MS AWARENESS WEEk: MARcH 14-20, 2011people all over the nation will be moving it during our sixth annual MS awareness Week, catapulting our movement toward a world free of MS. there are so many ways for you to take action and spread the word. Let’s get planning, together!

Fun Ways to Raise awareness:

organize a “Wear • ORANGE” day at your work or schoolconduct a Facebook campaign asking your friends to dedicate their status or profile • picture to the causeplan on sending out “orange” emails and include an MS awareness Week tagline• or think of your own creative MS awareness activity • (don’t forget to share your great ideas with us!)

WHat WiLL YoU do to engage, ConneCt, inSpire and raiSe aWareneSS?

check out the MS awareness Week website as March approaches for digital downloads, tools and resources, and other great ideas:

www.nationalMSsociety.org/get-involved/events/ms-awareness-week/index.aspx

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 on page 9 for more information.

HELP & SuPPORT

december 1, 2010Gloucester Group1st Wednesday of the month @ 10 amRiverside Wellness and Fitness center 7516 Hospital drive, gloucester, Va

**december 2, 2010African American Inspirational Group Holiday PartyGroupnormallymeets:1st thursday of the month @ 10:30 amHampton public Library936 Big Bethel Road, Hampton, VaFor more information contact Veegee at (757) 746-2103 or [email protected].

**december 8, 2010Williamsburg Group Holiday PartyGroupnormallymeets:2nd & 4th Wednesday of the month @ 5:30 pm James city county/ Williamsburg community center 5301 Longhill Road, Williamsburg, Va For more information contact Joann at (757) 220- 0902.

**december 15, 2010Peninsula Evening Group Holiday PartyGroupnormallymeets:2nd thursday of the month @ 5:30 pmSentara careplex Hospital (York River entrance, conf. Rm. a)3000 coliseum drive, Hampton, Va For more information contact dianaat (757) 722-2492.

december 14, 2010Virginia beach Morning Group 2nd tuesday of the month @ 10 amKempsville public Library832 Kempsville Road, Virginia Beach, Va For more information contact pete at (757) 497-6594 or [email protected].

**december 15, 2010Suffolk Group Holiday PartyGroupnormallymeets:3rd Wednesday of the month @ 6:30 pmMagnolia united Methodist church1764 Wilroy Road, Suffolk, VaFor more information contact Willie ann at (757) 539-0139.

Find Someone to CHat WitH on tHe WeB at WWW.MSWORLD.ORG.

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 Margie at (757) 482-3247.

Southside Group 4th Wednesday of the month @ 3 pmMeyera e. oberndorf central Library 4100 Virginia Beach Blvd., Va. Bch., Va

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

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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]

Acopyofourorganization’sfinancialstatementisonfilewithandavailablethroughtheStateDivisionofConsumerAffairsintheDepartmentofAgricultureandConsumerServices,uponrequest.

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!”