2011 Fall MSConnection

MOVING TOWARD A WORLD FREE OF MS | fall 2011

INSIDE THIS ISSUE

HampTon RoadS CHapTER

Vienna Boys ChoirpagE 5

Scholarship programpagE 8

Bike mSpagE 13

Volunteer SpotlightpagE 21

ANNuAL MEMbERShIp MEETING & RESOuRcE FAIRJoin us for our third Resource Fair to be held in conjunction with the Annual Membership Meeting! Vendors and community organizations will be present to answer questions and share information about local resources. Choose to come for the Resource Fair only OR stay for dinner, our Annual Meeting, volunteer awards, and keynote speaker.

KEyNOTE pRESENTATION: Come learn how far we’ve come, where we’re going, and what the Society and others are doing to move us closer to a world free of MS.

GuEST SpEAKER: DR. K. ALVIN LLOyDDr. K. Alvin Lloyd received his Doctorate of Medicine from the University of North Carolina at Chapel Hill School of Medicine in 1989. As part of his postdoctoral training, Dr. Lloyd was a resident and then Chief Resident for the Department of Neurology at the Medical College of Virginia, Virginia Commonwealth University. Dr. Lloyd has worked closely with the National MS Society since 1997 and has served on numerous clinical committees and Boards of Trustees.

INFORMATIONWhen: Thursday, October 27, 2011Where: The Westin Virginia Beach Town Center 4535 Commerce Street Virginia Beach, VA 23462Time: Resource Fair begins at 4:00 pm Cash Bar begins at 5:15 pm Dinner and presentation begin at 6:30 pmcost: $15 for dinner (attending the Resource Fair only is free) You may pay by credit card or check in advance; payment will not be accepted at the door. Scholarships are available upon request.

RSVp REQuIRED by October 19!Return the registration form on page 23 of this newsletter along with your check to the chapter or go online to buy your tickets at www.fightMS.com

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.

4th Tuesday of the Month at 5:30 pm Neurosciences Conference Room Riverside Medical Office Building 12200 Warwick Blvd. Newport News, VA 23601

Due to the holidays, group will not meet in November or December.

The group is offered by Riverside Center for Neurosciences and meets on an ongoing basis.

For more information call (757) 875-7880.

MS iNFORMATiON AND eNCOURAGeMeNT GROUP

3rd Thursday of the Month at 7 pm Sandbridge Community Chapel Community Center Building 3041 Sandpiper Road Virginia Beach, VA 23456

For more information, please contact Mike Finch at [email protected] or by phone at 757-721-3105 (please leave message)--email preferred.

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.

© 2011 National Multiple Sclerosis Society, Hampton Roads Chapter

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Respect, honesty, compassion, compatibility and civility are core ingredients of a successful caregiving relationship. But a sense of humor and a small amount of soul don’t hurt either.

i was diagnosed with MS in 1987, but i trace the disease back to the 1950s and a summer so hot it melted the tar on Anderson Avenue in the Highbridge section of the Bronx.

For 20 years, i have hired, fired and lived with caregivers. i call my current live-in caregiver Mr. Wizard. His technical and computer skills are remarkable. He has a sense of humor and he taught Sunday school for about 14 years. His younger sister is developmentally disabled and the love he feels for her shows a man of substance.

Here are a few of my tips to finding your own Mr. Wizard.

1. Have applicants supply the names, addresses and phone numbers of three personal or work references.

2. Hire someone with a clean driving record.

3. Have him or her agree to give one month’s notice—and do the same.

4. Don’t hire an alcoholic. (i expect my caregivers to be clean and sober in my home.)

5. Keep food separate. (Sometimes we eat together, sometimes we don’t.)

6. The caregiver’s room should hold all the caregiver’s goods. (i have no room for storage and nothing should hinder my movement in my home.)

7. No sleepovers and no inviting friends over without permission. (i need night coverage and that is non-negotiable.)

8. Keep your computer and printer for your personal use only.

9. if a caregiver steals, lies or cheats, make a plan for coverage before firing the miscreant, so you’re not left on your own.

10. Don’t surrender control of your life to anyone. Need help? Call a friend, call a relative, call the Society, call the closest independent Living Center and if necessary call the police.

Al Tainsky was a professional journalist and sometime writer of comedy for television when he was diagnosed with MS 24 years ago. He continued to live independently and to write articles for Momentum magazine, Real Living with MS, and other disability publications. He died of a heart attack in February shortly after completing this article. We will miss his smarts and his spirit.

MONEy MATTERS

WONDERING hOW TO AFFORD A cAREGIVER?

Call 757-490-9627 to talk to an MS Navigator®. Also go to

nationalMSsociety.org for the brochure, “Hiring Help at Home.”

TEN TIpS FOR hIRING hOME hELp By al TaInSky

MAKE A DIFFERENcE WhILE LEARNING NEW SKILLSBuild real-world skills while helping to create a world free of MS. The Hampton Roads Chapter is looking for qualified full or part time college students to intern. internships are available in a variety of fields. Positions are unpaid, but the experience will be invaluable! Academic credit/community service credit is available.

AVAiLABLe iNTeRNSHiPS:• Business Administration• Client Programs (Social Work)• Communications/Public Relations

Contact Karla McCarraher at 757-490-9627 or by email at [email protected] if you are interested in rounding out your education or if you know a student who may be interested.

NEWS

AccessibleVirginia.org, the expanded web version of The Virginia Travel Guide for Persons with Disabilities, has been revamped to increase usability by persons who are blind or have low vision. Also the web site is increasing its coverage to include retail businesses, hospitals, plus state and local government facilities.

Packed with information that persons with disabilities often find difficult to obtain in advance of their outings from home, the site is designed to meet the needs of those having mobility, visual, cognitive or hearing disabilities. AccessibleVirginia.org contains comprehensive data on attractions, lodging, bed and breakfasts, restaurants, outdoor recreation and shopping facilities, as well as listings of dialysis centers, sources for oxygen, equipment repair locations and even veterinarians for assistance animals. The access information is precise and thorough including locations and measurements of parking spaces, doors, aisles, stairways and bathroom facilities, types of assistive devices available, and specific programs for adults and children with disabilities.

“Our motto is ‘We describe, you decide.’ says Bill Duke, co-Founder of the Opening Door, inc. “We know from first-hand experience the importance of reliable accessibility information. Our son, Paul, has used a motorized wheelchair for almost 42 years and is ventilator dependent, and i have had significant hearing loss since childhood. The access guide grew out of questions we need to know before we go out to dinner, take an overnight trip, or visit any attraction.”

Cheryl Duke, the organization’s other founder explains, “The disability travel market has a unique dynamic and set of travel needs. We don’t have the luxury of spontaneity or flexibility because of our disabilities. So we have to know before we go. This is why comprehensive and detailed travel information is vital for us.”

Although Virginia is one of only three states having a travel guide or accessibility website specifically for persons with disabilities, AccessibleVirginia.org is the only one providing detailed access information allowing persons with disabilities to determine independently if the facility is accessible for their specific needs.

AccESSIbLE VIRGINIA ExpANDS WEb AccESS AND cONTENT

• Corporate Relations• Special events• Volunteer Program Management



The National Multiple Sclerosis Society, Hampton Roads Chapter is pleased to announce our new partnership with the Sandler Center for the Performing Arts! This is the holiday event of the year that you will not want miss; we only have a limited number of tickets and the show is sure to sell out!

When: Wednesday, December 14, 2011 preshow Reception: 5:30 PM performance: 7:30 PM Where: Sandler Center for the Performing Arts Tickets: Orchestra $100 Mezzanine $75

Includes a fabulous seat, pre-show reception and private cash bar.

No group of child musicians is more renown than the incomparable Wiener Sängerknaben, founded by emperor Maximilian i in 1498. Six centuries later, the famed Vienna Boys Choir continue to delight music-lovers across the globe with their purity of tone, distinctive charm and a diverse, crowd pleasing repertoire that encompasses Austrian folk songs and waltzes, classical masterpieces, beloved pop songs, holiday favorites and medieval chant. Gifted musicians with voices of unforgettable beauty, they carry on the Vienna Boys Choir’s illustrious tradition as the world’s preeminent boy choir.

The Vienna Boys Choir performance is extremely significant in creating a world free of MS. The National MS Society gives a voice to people with MS. We join forces with individuals who share our goal. We are 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 and RAiSe YOUR VOiCe TO MS!

Tickets may be purchased online at fightMS.com or by calling the chapter office. Corporate Sponsorships are also available. if you have any questions, or require additional information, please contact the Hampton Roads Chapter at 757-490-9627 or [email protected].

EVENTS

RAISE yOuR VOIcE TO MS! VIENNA bOyS chOIR: chRISTMAS IN VIENNA


Join us for fun, food and great beer! Gordon Biersch is tapping their seasonal Winterbock brew. WinterBock beer is a full-bodied, smooth, deep mahogany-hued lager. The birth of WinterBock-like beer happened in the 11th century when Bavarian monks brewed large vats of a strong, rich beer to keep warm and sustain themselves during long periods of fasting. its slightly sweet creaminess balanced by subtle hop bitterness ensured the monks would fast frequently. This lager is a holiday treat! At the Tapping Party, the Winterbock will tapped from a wooden keg. Guests may partake in tasting and appetizers. While enjoying your brew, check out the silent auction items and join in the bidding for the live auction. This night is guaranteed to be a blast!Do you have an auction item you’d like to donate? Contact the chapter at 757-490-9627. Hope to see you there!

GORDON bIERSch TAppING pARTy AND LIVE/SILENT AucTION TO bENEFIT MS!

WhAT’S NEW

Wednesday, November 96:00 pm – 9:00 pm

Gordon biersch brewery Restaurant

4561 Virginia beach blvd.Virginia beach, VA 23462

ATTENTION RuNNERS: hERE’S yOuR chANcE TO RuN FOR MS

We’re thrilled to announce the National MS Society, Hampton Roads Chapter is an official Charity Partner of the Norfolk Freedom Half Marathon and 5K! This year’s event is Sunday, November 13 in honor of Veteran’s Day. Your active participation in the Freedom Marathon on behalf of the National MS Society offers help and hope to those with MS. The funds you raise provide many

programs and services to those living with MS and their families in the Hampton Roads Community. Register today for The Freedom Marathon and recruit others to run with you! The more we raise, the more we can help our neighbors who are struggling with MS.

Norfolk Freedom half Marathon & 5K Sunday, November 13, 2011 • uSS Wisconsin Foundation One Waterside Drive • Norfolk, Virginia 23510

Register at fightMS.com or call 757-490-9627. For more information on the Freedom Marathon, visit freedommarathon.org. Remember to choose the National MS Society as your charity of choice!


LIVING WITh MS

Denial allows people to take time to get used to a new situation and not focus on fears of what might happen down the road. “Denial gets a bad rap,” said David Rintell, edD, a psychologist at Partners MS Center at the Brigham and Women’s Hospital in Boston, Mass., “but it can be very useful and is sometimes necessary.”

Denial is a very basic defense mechanism, explained Barbara Giesser, MD, clinical director of the UCLA MS Program. “in the process of adapting to chronic illness, denial can be a useful first step in the process of acceptance.”

in fact, said Dr. Rintell, people who are unable to use denial may become disabled by anxiety. “Hopelessness is destructive—it reduces motivation, and makes us less likely to adhere to treatment,” he said. “i encourage people to let go of the worst-case scenario and continue to live life, go to work, enjoy relationships and take some time to get used to having MS. Loved ones can help by giving their diagnosed friend or family member permission to deny and therefore cope.”

However, said Dr. Giesser, denial doesn’t work long-term. “You have to move past denial in order to treat and make plans,” she cautioned. “if instead of accepting your diagnosis, you believe the doctors made a mistake, you might not avail

yourself of appropriate therapy for both disease and symptom management.”

To develop a sensible perspective, it’s important to get as much information as possible. “Find a neurologist you can work with, who allows you to be active in your own care,” Dr. Giesser advised. “it’s less scary when you feel empowered.”

Dr. Rintell also suggested speaking with other people with MS or a professional with relevant experience. “After the initial shock, most people learn that MS can be a difficult illness, but they realize that they will be OK with it. Being optimistic turns out to be realistic.”

ThE bENEFITS OF DENIAL

pOTENTIAL ANTI-SpASTIcITy TREATMENT bOOSTED by ThE SOcIETy’S FAST FORWARD pROGRAMKey early-stage research on an oral treatment for spasticity, the painful and debilitating muscle spasms associated with MS, is underway at Canbex Therapeutics. The UK-based company received a $2.8 million Translation Award in March, 2011, from the Wellcome Trust, a global charitable foundation, to support this research. The work is being led by David Baker, PhD, an MS investigator under the National MS Society’s Promise: 2010 initiative. The Canbex spasticity program has been supported by the Society’s Fast Forward initiative to move this potential therapy toward clinical trial faster.

WAyS TO GIVE

The renewed legislation Congress enacted at the end of last year expires on December 31, 2011. This tax free option is available for individuals ages 70 ½ or older. Under the new law, you can use iRA funds to make charitable gifts without tax implications. if you are required to withdraw minimum distributions from your iRA and you do not need the money for personal use, consider giving part or all of it to the National MS Society simply by completing a new beneficiary designation form. Although you will not be able to claim a charitable deduction for the iRA gift, you will not pay income tax on the amount withdrawn.

• You may contribute funds through the iRA gift provision through the end of 2011 if:

• You are 70 ½ or older at the time of the gift.

• Your iRA gifts total $100,000 or less.

• You transfer the gifts outright to the National MS Society (This excludes gifts made to charitable trusts, donor advised funds, gift annuities and supporting organizations.)

• Your gift is completed by the end of 2011.

Be sure to contact your tax professional, your iRA administrator and/or the Society if you are considering a gift under this law. You may reach Sharon Grossman, Chapter President, at [email protected] or 757-490-9627.

hELp ThE NATIONAL MS SOcIETy, hAMpTON ROADS chApTER WITh A TAx-FREE GIFT FROM yOuR TRADITIONAL OR ROTh IRA!

GROWING ThE SOcIETy’S SchOLARShIp pROGRAM2011 was a record year for the Society’s ever-expanding scholarship program: over $1 million in new awards and renewals were granted to recipients such as Presidential Scholar Rebecca Merlenbach, diagnosed with MS at age 15, and Mike Dugan Scholar Breanna Burkes, determined to become a neuroscientist to stop the disease that affected her mother.

A large part of the support that keeps the scholarship program helping students like Rebecca and Breanna comes from individual donors. To find out how you can help, call us or visit www.nationalMSsociety.org/scholarship and click “Support the Program.”

Hampton Roads Chapter recipient Bria King plans to study Dentistry.



Friends of the National Multiple Sclerosis Society have a variety of ways to support the Hampton Roads Chapter at the workplace. While this is a very convenient way to support the Chapter, several of the numbers changed two years ago so please be certain that you are selecting the National Multiple Sclerosis Society (it may be listed Multiple Sclerosis Society, National).

COMBiNeD FeDeRAL CAMPAiGN is for Federal employees – both military and civilian. Mark #48028 on your pledge card. (Please, do not be confused with Multiple Sclerosis Association of America – MSAA.)

COMBiNeD ViRGiNiA CAMPAiGN is for State employees. Look for Multiple Sclerosis Society, National and mark your card accordingly or just WRiTe iN National Multiple Sclerosis Society #6049.

UNiTeD WAY: While the National Multiple Sclerosis Society is not listed as a United Way agency, you may WRiTe iN National Multiple Sclerosis Society on your pledge card and all United Ways will honor your designation.

CiTY eMPLOYeeS in selected cities and school systems will have the National Multiple Sclerosis Society listed among agencies. Choose

#6049. if you don’t see the number, be sure to designate by WRiTiNG iN National Multiple Sclerosis Society.

These are our approved brochure numbers, BUT always check the brochure and make sure; look for National Multiple Sclerosis Society, South Hampton Roads.

Thank you for your support and be sure to call the Hampton Roads Chapter at 757-490-9627 if you have any questions.

WAyS TO GIVE

TAKE NOTE: WORKpLAcE GIVING NuMbERS FOR FALL 2011

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.

JOIN ThE MOVEMENT®


Wii AND MEBy JonaTHan RUBIn

eighteen years ago, when i was 24, i lost something very important. i lost the ability to compete. i had played competitive sports my entire life. So much so i never thought what life would be without them. They were just part of me. But my competitive ability was taken away by my first major MS attack, one that left me dizzy, weak and bedridden (temporarily) for the first time in my life.

Soccer was my primary passion, with tennis and hockey following close behind. i was taught the “beautiful sport” of soccer first by Africans who lived in our apartment complex in Madison, Wis., when i was six. Then, when my family moved to england for three years, i learned another version, english football, which involves less intricate passing and more rough tackling and big kicks downfield. Then, back in the good ol’ U.S. of A.,

i played youth and varsity high school soccer. i was not great, but always good, always in the game, ready to play, an able teammate.

While at the University of California at Santa Cruz, i frequently played with members of the Banana Slugs Division iii, but never went out for the team — i think due to a youthful desire to be more intellectual, less jock.

i played on every intramural team, in every league, in every pickup game, whenever i had the opportunity to join, and would spend hours and hours just running around an immense field overlooking the Pacific Ocean chasing and kicking a small white ball. it was pure freedom. it wasn’t until the winter of ’92–’93 that i realized just how important it was to me.

After my first MS attack, it took me five months to get back on a basketball court and a year to even kick a soccer ball (my legs were heavily affected). it was probably 18 months before a friend talked me into trying a pickup soccer game. i was a little slower, a little shakier, a little

weaker, but it was soccer, by golly, and i loved it. However, after many ups and downs and all arounds, my MS has shifted into secondary-progressive. i now walk with a cane and can only imagine playing in an actual soccer match.

Tennis is a similar story. it was an early casualty of MS. Running made me dizzy and confused, neither of which is conducive to playing quality tennis.

LIVING WITh MS

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it is difficult for me to even break a sweat these days, let alone get a true aerobic workout. The muscles in my legs quit after two minutes of stationary bike riding and after 10 on a rowing machine. if i work out for 15 minutes, it becomes next to impossible for me to walk out of the gym. i enjoy yoga, but my muscles buckle with any pose that involves the legs.

Which brings me to the present, to this Christmas actually, when my family and i (my two sons are jocks too — go figure) bought the Wii Fit Plus game station from Nintendo.

Thanks to Wii, i can play golf, and i am once again a champion (level 2000) tennis player. i can groundstroke endlessly, connect on every overhead slam and whip forehand winners crosscourt. i can serve big, rush the net, and still backpedal to the baseline. i can sweat like a pig again. i am, in a sense, complete.

My experience reminds me of the scene in the movie Avatar where the wounded veteran, who

has lost the use of his legs, has his mind put into the body of an avatar. He walks a few trembling steps, and then starts running and running and running. He will not stop. it is impossible to imagine what it is like to not be able to run until you can’t.

i haven’t yet tried soccer and basketball on the Wii and i’m not sure that Nintendo can capture the joy of those sports quite as well as they did with tennis. But i’m ready to start the PGA tour with Woods and Mickelson. Who wants to caddy?

Jonathan Rubin, who lives in Madison, Wis., is currently ranked 5,024 in the world on Wii Grand Slam Tennis and hopes to be #1 by spring.

LIVING WITh MS

AFFORDING Wii

One of Wii’s drawbacks is that it’s not

cheap. it usually retails for $250 and up,

depending on model, accessories and

games, although with a little internet

research, you may uncover lower prices.

In honor of Kristine brown Tony & Patrice HageIn honor of Linda courts Darrell & Claudine PattonIn honor of yvette Ghormley Nancy ArnoldIn honor of Martha Lewis Scott MahrenholzMother’s Day Gift in honor of Jacqueline Napolitano Theresa NapolitanoIn honor of claudia pietras Kristin MonroeIn honor of Whitney Stolle Christine Banks Vivian Barber Mona Brandl Debra Brooks Melissa Casey Kathryn Chander Janice Clifton Terry Davis Tamarah Humphreys Debra Keane Diane Marx Cynthia Mason Peggy UlreyIn honor of Mike & cathy WeathersDarrell & Claudine PattonIn honor of Tammy Wittmer-bagby Christine Berry

Dennis bohlander David & ellen ScottJoseph carlyle brown, Jr. Scott Ackerman James & Susanne AntonickTed & Brownie Bartley Trisha Brown Melanie Caudron Nicholas Contristan Stephanie Costello Michelle Cottrell Ruth Dow Betty Dame Dickie & Mindy Hardee William & Nancy Layng Matt Megary Timothy & Amanda Moore John & Joan Myles Sherrie Nutzman Joe & Nan Pointer Bernard & Debbie Robins Thomas Sanders Marion Schulte Marlene Stankiewicz Heidi Sung York River Kings Daughters & SonsWilliam cashatt Marianne Cashatt

Robert Anthony DiGregorio Thomas DiGregorioRobert Jenkot Curtis & Robyn Bailey Nancy McClure Mike & Dayna Miller Kathleen Morocco Joanne Murphy Seatack elementary School Catherine WadleyElsie Johnson Michael, Sharon & Nikki GrossmanWalter Reed Oliver Frances Brown Billie edwards Bob & Jennie Howe Carmen StanfordRhonda T. Roehr Hans & Liv SchadlerAmanda Schmidt Dennis Allion Thomas SchmidtJessie Tabakin Doris Friedman Norfolk Collegiate SchoolWilliam E. Wade earl industries, L.L.C. William & Teresa King Ronnie & Sharon Phelps edna Phillips & Family Portsmouth Sunday School Bowling League John Williamson

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 April 26, 2011 and August 26, 2011. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.

MEMORIAL GIFTS TRIbuTE GIFTS

DONATIONS

If you would like to make a memorial or tribute gift, please contact the chapter at 757-490-9627 or visit

fightMS.com


EVENTS

This year, over 600 cyclists and 200 volunteers took to the roads of Virginia’s eastern Shore for Virginia’s Ocean to Bay Ride.

Exciting news for bike MS 2012! We will be offering a 75-mile one-day route and a century one-day route! Both one-day routes will begin at Cape Charles and finish at Camp Silver Beach where shuttles will transport cyclists back to the start. Please note: we will no longer have the 60-mile route from Silver Beach.

Cyclist registration is now open at fightMS.com. Registration is $32 plus accommodations until December 31, 2011. On January 1, 2012, registration will be $45 plus accommodations. As a special thank you to our cyclists, anyone who has participated in at least five Hampton Roads Chapter Bike Rides will receive a Big Wheel t-shirt. Of course we cannot host such an event without volunteers! if you are interested in Bike MS volunteer opportunities, please contact Karla McCarraher at [email protected].

We LOOK FORWARD TO SeeiNG YOU NexT YeAR!

ThANK yOu

The success of Bike MS comes from the dedication of the cyclists, volunteers, and sponsors who are devoted to creating a

world free of MS. Many thanks to the Bike MS 2011 sponsors:

93.7 BOB FMBay Creek Resort & Club

eMD SeronoBest Western of the eastern Shore

Teva NeuroscienceChili’s

bIKE MS RAISES $508,000! NEW ONE-DAy ROuTES FOR bIKE MS 2012

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 special…the opportunities are endless!

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

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cAREGIVER

NOVEMbER IS NATIONAL FAMILy cAREGIVERS MONTh — A TIME TO ThANK, SuppORT, EDucATE AND EMpOWER cARE pARTNERS!in celebration of the 10th anniversary of its National Family Caregiver Support Program, the U.S. Administration on Aging, has declared 2011 the “Year of the Family Caregiver.” To honor their work and to focus public attention on the contributions of caregivers throughout our area we would like to publicly acknowledge your special care partner.

DO YOU THiNK THAT YOUR CAReGiVeR iS THe BeST? Show your caregiver that you care by nominating them for the special recognition they deserve! We will do email blasts throughout the month of November highlighting those who have given so much—and given up so much to support others. One extraordinary caregiver will be crowned “Caregiver of the Year” by the Hampton Roads Chapter and will receive a prize package fit for a king or queen.

CAReGiVeRS: WHO THeY ARe? There are a wide range of care giving activities, just as there are a wide range of abilities and disabilities among people with MS. Someone giving care to a person who has relatively few functional difficulties may be helping with injections of a disease-modifying drug and offering support in dealing with the medical team. Someone caring for a person with a more severe level of disability may be involved in daily activities like toileting, dressing, transferring, and feeding, as well as medical treatments.

Caregivers can be the spouse or partner, daughters, sons, parents, siblings, other relatives, or even a friend of the person in need of assistance.

Up to one quarter of individuals living with MS require long-term care services at some point during the course of the disease. Often, a family member steps into the role of primary caregiver, becoming some of the 65 million informal caregivers that provide 80% of our nation’s long-term care.

HOW DOeS THe NOMiNATiON PROCeSS WORK? The Hampton Roads Chapter is accepting nominations for the 2011 Caregiver of the Year until October 28, 2011. Please mail or email your letter of support (1,000 words or less) telling us how your caregiver shines above all the rest. Please be sure to include a cover letter answering the questions listed below:

1. What is your name, address and phone number? 2. What is the name, address and phone number of the person you are nominating? 3. What is your relationship to the nominee? (ex. Spouse, parent, friend) 4. how long has s/he acted as your care partner? 5. Describe his/her responsibilities as a care partner.


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THiNGS TO KNOW:• Please include pictures of the nominee and yourself if at all possible.• The nominee must have provided care to the nominator within the past year. • Winners will be selected by a panel.• By submitting a nomination you grant permission to the National Multiple Sclerosis Society

(“NMSS”), Hampton Roads Chapter to use, reuse, publish and republish your name, voice, likeness, and/or other indicia of identity, in any medium now known or hereafter developed, alone or in conjunction with other material, without restriction as to changes or alterations, for editorial, educational, promotional and advertising purposes, including without limitation in connection with the solicitation of contributions and the furtherance of the corporate objectives of NMSS, and to use biographical and other information about me in conjunction therewith.

• Submit your nomination by October 28, 2011 to: Mail: National MS Society, Hampton Roads Chapter email: [email protected] Attn: Caregiver of the Year Panel 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452

HOW WiLL THe NOMiNeeS AND WiNNeR Be ReCOGNizeD? The National MS Society, Hampton Roads Chapter will be conducting a Caregiver awareness campaign during the month of November to thank, support, educate and empower care partners and the community. email blasts, web features, and facebook statuses during the month will feature different Caregiver of the Year nominees, as well as education and resources about caregiving. One extraordinary caregiver, as decided by our panel, will be crowned “2011 Caregiver of the Year” by the Hampton Roads Chapter and will receive a prize package fit for a king or queen.

For more information or if you have questions, please contact Robyn M. Hirsch, Director of Programs and Services, at 757-490-9627 or [email protected].

cAREGIVER

For many people with MS, physical, speech or occupational therapy may be essential in preventing their abilities from deteriorating. However, many of these folks have been denied medically necessary rehabilitation services that they are eligible for through Medicare because of something called the “improvement standard.”

The standard actually violates Medicare’s own official regulations, which say that “the restoration potential of a patient is not the deciding factor” for coverage and that therapies that help prevent physical and cognitive deterioration or maintain optimal functioning, even if improvement is not expected, are to be covered.

This past January, a class- action lawsuit was filed in the U.S. District Court in Vermont, with the National MS Society as the first national health organization named plaintiff, and subsequently joined by the Alzheimer’s Association, United Cerebral Palsy, Parkinson’s Action Network and Paralyzed Veterans of America. The lawsuit seeks to assure that a person’s “improvement” status is not a basis for denying ongoing therapy services. The outcome will be reported in “Government News” at www.nationalMSsociety.org/advocacy.

MEDIcARE “IMpROVEMENT STANDARD” chALLENGED


STRESS AND MS

Stress may play a role in exacerbating MS flares, but does it cause the disease in the first place? A new study suggests that stress does not appear to increase the risk of developing MS.

The study, published in Neurology, May 31, 2011, focused on two large groups, totaling almost a quarter million women, from the Nurses’ Health Study, which has followed a large number of female nurses for decades. The nurses were asked to report on general stress at home and at work, and also any physical or sexual abuse as children or teenagers.

The investigators, led by Trond Riise, PhD, University of Bergen, Norway, compared the answers between those nurses who had developed MS and those who had not. They also took into account age, ethnicity, smoking habits and other variables that have been linked to an increased chance of developing MS.

The researchers found that those who later developed MS had not responded significantly differently from those who had not developed MS. Although this sounds persuasive, Dr. Riise cautions that more research is needed to definitively exclude stress as an MS risk factor.

upDATE ON ORAL bG-12in April, Biogen idec announced that the experimental oral therapy BG-12 significantly reduced relapses in people with relapsing-remitting MS in a phase iii trial. The results of another study comparing BG-12 with glatiramer acetate against placebo are expected later this year.

A LINK TO hERpES? Viruses are well recognized as causes of nervous system damage and inflammation, so it is possible that a virus may set off MS. Various types of evidence point in particular to an association between MS and epstein-Barr, a herpes virus that causes infectious mononucleosis and other disorders. Now, a new study hints at another possible link, this time between herpes zoster and MS.

Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster—which usually shows up as the skin rash known as shingles—were more than three times as likely to develop MS over the next year than individuals who did not have an attack. The study, reported in The Journal of Infectious Diseases (6/7/2011), used a large data set of Taiwanese people. However, since people of Chinese genetic background are at lower risk for MS than Caucasians, the researchers do not know yet if this finding will translate to other populations.

RESEARch

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RESEARch

VITAMIN D IN AFRIcAN-AMERIcANS WITh MSResearch increasingly points to low levels of vitamin D in the blood as a risk for developing MS. A new study, [www.neurology.org/content/76/21/1824] funded in part by the National MS Society, does show that African-Americans with MS have lower levels of vitamin D than African-Americans who don’t have MS.

Researchers Jeffrey Gelfand, MD, Ari J. Green, MD, and colleagues at University of California, San Francisco, found that of the group with MS, 77% were deficient in vitamin D, compared to 71% of those without MS. The study, based on examining 339 African-Americans with MS and 342 without the disease, found no link between vitamin D levels and how severe the disease was.

African-Americans in general have an increased risk for low vitamin D levels, possibly because their skin has large amounts of melanin, which acts as a filter of ultraviolet light. This in turn limits how much vitamin D the body can produce. Study participants with a higher proportion of european genetic ancestry were less likely to have low vitamin D levels than participants with a lower proportion of european ancestry.

The risk of MS in African-Americans is about half that of Caucasians. However, the same researchers previously reported that African-Americans tended to have a more aggressive course of MS than Caucasians, a higher risk for mobility impairments, were more likely to develop MS later in life and were at higher risk for symptoms in the optic nerve and spinal cord.

cLINIcAL TRIALS upDATEThe Society’s annual list of clinical trials in MS is now available online at www.nationalMSsociety.org/clinicaltrials.

it features 130 studies that are in progress or recently completed. These cover neuro-protective agents; symptom medications; rehabilitation interventions such as cycling for improving MS-related depression, mobility and cognitive function; and more.

More than 52,000 volunteers have participated or are currently participating in these studies. Their participation—and yours—makes it possible to look forward to new therapies for MS.

OK TO MIx pREGNANcy AND MSResearch continues to confirm it’s OK to mix pregnancy and MS.

A study published online in Annals of Neurology June 27, 2011, compared 432 births to women with MS and 2975 births to women without MS, confirming previous findings that, overall, the women with MS had normal pregnancies. The mean birth weight and gestational age of babies did not differ and women with MS were not at greater risk of adverse deliveries, including Caesarean sections.

it was the first study where researchers were able to control for other factors that could affect outcomes, such as disability levels, obstetrical history and body mass index.


pEDIATRIc MS STuDIES REcEIVE FEDERAL SuppORT

The Society’s network of Pediatric MS Centers has been awarded a five-year grant from the National institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with MS and matched controls without MS for a single visit to one of 10 centers around the country—in California, New

York, Massachusetts, Alabama, Minnesota, Texas, Pennsylvania and Washington. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign. To learn more about the study including referral information, please email [email protected] or call 415-514-2476. For more information about pediatric MS, visit www.nationalMSsociety.org/pediatricMS.

ccSVI STuDIES—ONE-yEAR upDATEThe first-year progress reports from seven Society-funded studies of CCSVi, or chronic cerebrospinal venous insufficiency, were released July 14, 2011. The research teams report being on track in collecting objective and comprehensive data. The studies were launched with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society.

The research teams have recruited a broad spectrum of people with and without MS. Already more than 486 people have been scanned using various imaging technologies. Only by refining imaging methods can investigators more reliably validate if a person actually has CCSVi and better understand its relationship to the MS disease process.

The full results, to be released after completion, will help guide future steps, including the development of clinical trials to test whether treating CCSVi is safe and effective for people with MS.

in the meantime, several of the teams will present preliminary results at medical meetings later this year. To read more about the studies and to get the news of results, visit www.nationalMSsociety.org/ccsvi.

NEWS

Children with MS attend Champ Camp, held at Camp For All in Burton, Tex. Photo: Chase Shull Artisan Portrait Studios, courtesy of the South Central Region.

GET ThE LATEST!

Visit www.nationalMSsociety.org/signup to sign up for monthly MS eNeWS.

ADVOcAcy

up-TO-DATE FAQS ON ThE AFFORDAbLE cARE AcTTo help people with MS understand the Patient Protection and Affordable Care Act, or ACA, signed into law March 2010, the Society regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/AcAFAQ.

On this page, people can find answers to questions like: What if i am about to lose my COBRA coverage? Can children with pre-existing conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health insurance exchanges”? Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out?

The FAQs also explore the regulations pertaining to the ACA provisions, as well as legal challenges the ACA faces. in addition, there are many links to fact sheets and useful websites that provide more in-depth information on specific issues.

As various provisions of the ACA kick in over the next few years, the Society will continue providing up-to-date information and links.

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November 5, 2011 3:00pmHilton Garden Inn

252 Town Center DriveVirginia Beach, VA 23462

Please RSVP by November 4, 2011by calling 800-973-0362.

ADVERTISEMENTThis program is sponsored by Novartis, maker of Gilenya.

NovartisMS Education Link

An opportunity to learn more about multiple sclerosis (MS) and a prescription treatment option


cREATE A FuNDRAISER TO REMEMbER! DIy EVENTS TO cREATE A WORLD FREE OF MSDid you know there are literally thousands of ways you can help? People who want to contribute to the mission to end MS are invited to dream up and produce original events that raise money for research and care.

every year, all over the country, volunteers organize and host golf, billiards and bowling tournaments, auctions and raffles, dinners, concerts, rummage sales, wine tastings, barbecues, motorcycle fun rides, skiing days and dances. Other events include a trap and skeet fun shoot, a bratwurst and bake sale, a boat show and a car show. Holiday themes are also popular, such as easter egg hunts or Halloween parties with a pay-to-enter costume contest. The types of benefits to create are limited only by the imagination.

These events may raise anything from a few hundred to tens of thousands of dollars. There’s no minimum required and certainly no maximum. And you don’t even have to create a brand-new event. You can add a fundraising element to pretty much any existing occasion.

How much time it takes to prepare depends on how elaborate the plans are. They can be as simple as asking friends to pay a few dollars at the door to attend a private party. On the other hand, a large-scale gala might take four to six months, or even longer, to plan.

Have a great idea? Call or email Shannon Rice, [email protected] and say “i want to DiY for MS!” and you will receive Community event materials.

WAyS TO GIVE

DIy FALL ThEME: DIREcT SALES pARTIESThe Hampton Roads Chapter wants to take it a step further! each season we’ll have a theme! For the Fall, host a party… but not just any kind of party, but a direct sales party such as Mary Kay, Tupperware, Party 31, PartyLite, Pampered Chef. The list goes on! Find a sales consultant

in Hampton Roads and request a percentage be donated to the National MS Society, Hampton Roads Chapter. The best thing about holding the party in the Fall is you will have all your holiday

shopping done and will have made a donation to create a world free of MS!

FuTuRE ThEMES: Winter - Cocktail Parties and Supper Clubs

Spring - Yard Sales

Summer - Sports

NO MATTeR WHAT THe eVeNT, YOUR SUPPORT AND CONTRiBUTiON MAKe A DiFFeReNCe!

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VOLuNTEER SpOTLIGhT

As some of you know, the Hampton Roads Chapter of the National Multiple Sclerosis Society has only 5 Staff members and 1 intern. How are we able to accomplish so much?! Volunteers!! each and every volunteer is essential in helping us create a world free of MS, but the Group of Tuesday Morning Ladies hold an extra special place in our hearts. Their commitment is year round.

They meet almost every Tuesday around 9:30 am in the work room of our Chapter office. They set to work on all those great mailings you receive. They print, fold, stuff, tab and label each and every piece of mail. Some mailings are just a couple of hundred, but some are in the thousands. They steadily work chatting away amongst each other and with us. They get it all done and then ask “what else can we do?” They do it all!!

The Tuesday Morning Ladies has evolved into a group of five wonderful ladies – each with a connection to MS. Some weeks we get all 5 ladies in the office and some weeks it is just two.

However many, we are always thankful.

The leader of the Tuesday Morning Ladies or CeO (as they affectionately call her) is Shirley McClaskey. She has earned this position through 22 years of dedicated service to the Hampton Roads Chapter. Shirley has been here for all 22 of our Walk MS. She often helps us out in the Counting Rooms at both Walk MS and Bike MS too. Shirley is an amazing woman and very special to all of us at the Chapter.

Shirley is supported by four wonderful ladies that make it all work on Tuesdays. They are: June Sylvera, Barbara Sims, Patti Sutliff and our newest member, Charletta Horne-Tanner. We are so happy to have each and every one of them and hope they will continue to support the Chapter for many years to come!!

You can become involved with the Chapter too through volunteering. Visit our website at fightms.com or call the Chapter office at 757-490-9627 to learn about what is available.

INTERESTED IN VOLuNTEERING? CHECk oUT oUR wEBSITE,

WWW.FIGhTMS.cOM.

OuR TuESDAy MORNING LADIES


hAMpTON ROADS chApTER SELF hELp GROup LISTINGFor more information on any of the following groups contact (757) 490-9627 unless otherwise noted.

hELp & SuppORT

Virginia beach Morning Group 2nd Tuesday of the month @ 10 am(February, May, August, and November group meets at 11:30am at Frankie’s Place for Ribs: 5200 Fairfield Shopping Center, Va. Bch., VA)Kempsville Public Library832 Kempsville Road, Virginia Beach, VA For more information contact Pete at (757) 497-6594 or [email protected].

Elizabeth city Group 3rd Monday of the month @ 2:30 pmFor group location and/or more information contact Melvin at (252) 335-9158.

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.

Suffolk Group 3rd Wednesday of the month @ 6:30 pmMagnolia United Methodist Church1764 Wilroy Road, Suffolk, VAFor more information contact Willie Ann at (757) 539-0139.

Southside Group 4th Wednesday of the month @ 3 pm(Group will meet at Kempsville Public Library in October.)Meyera e. Oberndorf Central Library (Libris Room)4100 Virginia Beach Blvd., Va. Bch., VA

Gloucester Group1st Wednesday of the month @ 10:30 amRiverside Wellness and Fitness Center7516 Hospital Drive, Gloucester, VA

African American Inspirational Group 1st Thursday of the month @ 10:30 amHampton Public Library936 Big Bethel Road, Hampton, VAFor more information contact VeeGee at (757) 696-2540 or [email protected].

Williamsburg Group 2nd & 4th Wednesday of the month @ 5:30 pm James City County/ Williamsburg Community Center5301 Longhill Road, Williamsburg, VA For more information contact JoAnn at (757) 220- 0902.

peninsula Evening Group* 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 Diana at (757) 727-0427.

*in October Group will have Guest Speaker discussing Gilenya.

Connect with an MSFriend at 866-673-7436,

7am until Midnight ET.

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

SoUTHSIdE and nC pEnInSUla

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2011 ANNuAL MEMbERShIp MEETING REGISTRATIONRSVp by Wednesday, October 19th

Name(s): ____________________________________________________________________

Address: _____________________________________________________________________

City:____________________________________ State:_________ zip: ___________________

Phone: ______________________ email: __________________________________________

m i will attend, my registration fee is enclosed. m i plan on coming early to attend the Resource Fair (no cost)

Registration fee: $15.00 per person (includes program and dinner). Please make checks payable to the National Multiple Sclerosis Society. To request a scholarship, please call the chapter at 757-490-9627.

Mail registration and fee to:National MS Society, Hampton Roads Chapter760 Lynnhaven Parkway, Suite 201, Virginia Beach, VA 23452

NEW ADA RuLESMore than 20 years after the enactment of the Americans with Disabilities Act (ADA), noteworthy changes went into effect March 2011. These demonstrate a continued commitment to realizing the full potential of the ADA and to properly enforcing civil rights of people living with disabilities.

The definition of “disability” had been selectively narrowed over the years. Now, the equal employment Opportunity Commission’s new regulation is clear. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities, regardless if the disability is in remission.

Multiple sclerosis will almost always meet the “disability” criteria because MS limits a major life activity (namely, neurological function).

The revised regulations also adopt the 2010 Standards for Accessible Design, setting minimum requirements for new construction or alterations of facilities of some 80,000 state and local governments and of more than seven million public places, including stores, restaurants, hotels, malls, libraries, museums, sports arenas, theaters, medical offices,

polling places and emergency preparedness centers.

Learn more at www.ada.gov. Also visit the ADA National Network at www.adata.org or call 1-800-949-4232 for information and training on how to implement the ADA in our area.

chApTER STAFF Sharon L. Grossman, MScIR Chapter President and Chief Professional Officer [email protected]

Robyn M. hirsch, MScIR Programs and Services Director [email protected]

Karla Mccarraher Director, Special events [email protected]

Michelle R. Derr Vice President of Finance and Administration [email protected]

Shannon R. Rice Director, Community Development [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.

DiD YOU KNOWTHAT oRangE iS THe

NeW GReeN?Help us “Go Orange!” The National MS

Society is developing* an email list of those folks who would like to receive the MSConnection as an e-newsletter

sent directly to their inbox! if you would like to help us conserve, send an email to [email protected] with the

subject line “Go Orange!”

* Please be patient as we work out developing this new delivery method.

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Norfolk, VAPermit #162

hampton Roads chapter

760 Lynnhaven Parkway Suite 201Virginia Beach, VA 23452

Documents

2011 Fall MSConnection