Hampton Roads CHAPTER
MOVING TOWARD A WORLD FREE OF MS Hampton Roads Chapter
Spring 2010
MS Awareness Week: March 8-14, 2010 T his year’s theme is Move it. Move it is a theme that comes with many different connotations – from serious to humorous, to interactive and edgy, to provocative – and is always in support of our core message: movement. Move it is all about moving the message forward; it’s about volunteering, walking, cycling, advocating, educating, raising awareness; showing that every unique mark builds the MS movement; it’s about encouraging people to support the Society and motivating the millions of people who want to do something about MS now.
INSIDE THIS ISSUE:
Whether you’re a Move It maverick or a Move It motivator, you can make a difference in the lives of the people who live with MS. There are fun and easy activities throughout MS Awareness Week that will make you feel ‘good’ while you do good; see page 14 for more information.
Virginia Lobby Day Page 4
New to MS? Page 7
Tax Time 2010 Page 12
Financial Assistance Page 22
757-490-9627 1-800-FIGHTMS Publication of the National Multiple Sclerosis Society Hampton Roads Chapter 760 Lynnhaven Parkway, Suite 201 Virginia 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 1-800-3444867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. Š 2010 National Multiple Sclerosis Society, Hampton Roads Chapter 2
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CommunitY Calendar Programs in this section are not organized by the National Multiple Sclerosis Society. Multiple Sclerosis Educational Group The Multiple Sclerosis Educational Group is your opportunity to exchange information and coping strategies and get the latest on MS research and treatment in a comfortable and confidential environment. This program is designed for Multiple Sclerosis patients, caregivers, and families. Next meeting will be held: Wednesday, March 3, 2010 at 7pm Neurosciences Conference Room Riverside Medical Office Building 12200 Warwick Blvd. Newport News, VA 23601 The group is offered by Riverside Center for Neurosciences and will meet the first Wednesday of each month. For more information call (757) 875-7880.
A Double Destination With nearly 600 Walks and 100 Rides all over the country, many people are planning a double destination — raising money to fight MS and having a reunion with family or far-flung friends. For information on events where and when, visit nmss.org
chapter news
Join the Golden Circle Today
Golden Circle members receive unique benefits, including: • Unmatched access to breaking research news • Invitations to research briefings with the experts • Invitations to the chapter annual meeting and the National MS Society Conference • A subscription to both the Momentum Magazine and MSConnection Newsletter
The National Multiple Sclerosis Society, Hampton Roads Chapter is excited to announce the launch of the Golden Circle, a new donor-focused recognition program for those who share a similar commitment to achieving a world free of MS. The Golden Circle was created to acknowledge the important support of individuals who truly make their mark against MS by making an annual gift of $1,000 or more.
Your Commitment to Join the Movement With your annual qualifying gift of $1,000 or more, you will become a valued member of the Golden Circle, providing leadership to move us more quickly toward a world free of MS. Your donation and membership will be recognized, with your permission, in the MSConnection and other publications to encourage members of the Hampton Roads Chapter to join with you in your leadership role. Please join many other caring individuals, corporations, and foundations who want to do something more about MS now. Your gift will have immediate impact, and your commitment will enable you to have greater participation in advancing a cure for MS. For more information contact Sharon Grossman by phone at 757-490-9627 or online at sharon.grossman@nmss.org.
Hampton Roads Chapter Facebook Page Goes Viral There’s a new way to connect. Your Hampton Roads chapter is now on Facebook. Search National Multiple Sclerosis Society, Hampton Roads Chapter and become a fan. Stop by to get information on upcoming events, connect with others, and share your story. Every voice counts and we need to hear yours. Through Facebook your voice will reach others that may never get the chance to learn about MS and how they can help us move closer to finding a cure. By joining, your friends will see your activity and passion for our cause. Every post you make will be seen by all of your friends increasing their awareness of the important work being done in the search for a cure. MS stops people from moving. Our goal is to keep you moving. Make a difference. Help keep our voice moving by participating in this new medium. Make your voice heard. This is your place to be encouraged and encourage others. The more you participate, the more attention you gain for a great cause. Become a fan. TOLL FREE NUMBER 1 800 344 4867
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advocacy
2010 Virginia lobby day Seven MS Activists from Hampton Roads gathered with advocacy volunteers from across Virginia on January 24-25 for the 2010 Virginia Lobby Day! Led by the four Virginia chapters of the National MS Society (Blue Ridge, Central Virginia, Hampton Roads, and National Capital), the Virginia Citizen Action Network (VA CAN) represented the more than 10,000 people living with MS throughout the state. The VA CAN is a collaboration of people who want to do something about MS now. Activists arrived in Richmond for an intensive day of issues training on Sunday. And then on Monday, they headed to the Capitol to share their powerful stories with legislators and to urge them to support legislation relevant to people living with MS and their families. Specific pieces of legislation included: Developing plans and programs to assist the transportation-disadvantaged (HB 259) Developing a blueprint for livable communities and long-term services and supports for older Virginians and people with disabilities (HB 514, SB 410) Studying the costs and benefits of implementing the Home and Community-Based Services State Plan Option (HJ 83) Removing the name, age, and sex of the person from permanent and removable windshield placards (SB 45) Implementation of a system to accept absentee ballot applications electronically (SB 144). Extending the sunset for the Community Integration Advisory Commission (SB 148) Developing guidelines on universal design and visitability features to make structures and dwellings accessible for older Virginians and people who develop mobility impairments (SB 262) In addition, we held our first Virtual Advocacy Day so that the entire community could be involved in the MOVEMENT to access better support services for those with MS. We thank all of you who made the pledge to: • Email their representatives the same week as advocacy day to reinforce our message • Change their Facebook status during advocacy day to let everyone know what we did in Richmond • Update their personal blogs with information about our priority issues • Follow our Twitter account (vaMScan) for live updates If you would like to learn more about how you can be more involved in advocacy or become an MS Activist, visit the “Take Action” section of our website (www.fightMS.com) or email advocacyVA@nmss.org. 4
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advocacy
(L to R) Jeff Kerr, Debbie Smith, Delegate Lionell Spruill, and Joy Durham
(L to R) Teresa Crowson, Senator John C. Miller, and Denise Kellum
Waiting our turn to speak with a legislator. (L to R) Shannon Rice, Marcellus and Margo Heath TOLL FREE NUMBER 1 800 344 4867
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Chapter News
Become a Movement AUTOS-4-MS: Ambassador. Don’t Delay. Inspire. Educate. Move. Help Drive MS Away. 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 held on March 9 on the Southside and March 24 on the Peninsula from 6:30 – 7:30 pm. If you are interested or would like more information, please contact Shannon Rice at shannon.rice@nmss. org or Robyn Hirsch at robyn.hirsch@nmss.org. 6
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The donation of your car, truck, motorcycle, or trailer to the AUTOS-4-MS program can be used to help fund critical research for multiple sclerosis. Unlike other vehicle donation programs, the National MS Society receives 100% of the proceeds from these sales. These dollars fund programs and services for people living with MS, as well as research that will move us closer to a cure.
What happens when you donate your vehicle? When you are ready to donate, call the toll free telephone number at 1-877-672-8864 or fill out the online donation form available at www. autos4ms.org. Next, fax a clear copy of the front and back of your title to 1-877-672-2774. Once your vehicle is accepted, our towing company will contact you to schedule having your vehicle picked up at no cost to you. As soon as your vehicle is sold at one of our auctions yards and we receive the sale transaction paperwork, we will promptly transcribe that information onto your tax receipt, which we then send to you. 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. Next time you or someone you know buys a new car, consider donating your used car to the National MS Society’s AUTOS-4-MS program. For more information, visit www.autos4ms.org or call the toll free telephone number at 1-877-672-8864.
NEWLY DIAGNOSED
New to MS? NARCOMS Needs You BY Tuula Tyry, NARCOMS Program Manager picture it is crucial that we continue to grow the NARCOMS database by having newly diagnosed people as well as others with MS join the project. Would you consider joining?
Who’s in already? The registry has almost 35,000 participants from all over the United States and Canada and from about 50 other countries. The age of participants ranges from 18 to over 100.
What am I expected to do?
As you know by now, MS is a very perplexing disease. Despite a wealth of research, many aspects of the disease remain poorly understood. The non-profit NARCOMS Registry* expedites MS research by providing a unique resource for investigators. The NARCOMS Registry is based on the concept of following disease and treatment patterns in a large group of people over time, similar to the Harvard Nurses’ Health Study that has been running since 1976. The information gathered for NARCOMS is used in a statistical manner only, so all the personal details remain confidential. Just like the Nurses’ Study that unravels links between health and lifestyle choices, NARCOMS is providing similar insights into MS. But to get a complete
Complete the enrollment survey online at narcoms.org or call 800-253-7884 to request a mail-in survey. After that, you will get an update survey online or by mail two times a year. Each survey typically takes less than 20 minutes to complete. That’s it. There is no cost to you. As a benefit, you are entitled to a complimentary subscription to the Multiple Sclerosis Quarterly Journal (or MSQR), an informative publication focused solely on the latest in MS research. NARCOMS participants may also be eligible for clinical trials and other survey studies. All study notifications will come directly from us — your contact information will not be shared with anyone — and the decision is always up to you. Need more information or enrollment material in English or Spanish? Call Desi or Davis at 800-2537884 or e-mail MSregistry@narcoms.org. *NARCOMS (narcoms.org)The North American Research Committee on MS is a project of the Consortium of Multiple Sclerosis Centers (mscare.org/cmsc) a trusted partner of the National MS Society. TOLL FREE NUMBER 1 800 344 4867
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National NEWS
Tom Kuhn to lead the Society’s National Board At the Leadership Meeting in Chicago this November, Tom Kuhn accepted the responsibility of being the Society’s top volunteer leader, as chair of the National Board of Directors. “Tom will see the organization through many coming changes,” said Joyce Nelson, the Society CEO, in welcoming the new leader. “As oral medications enter the marketplace, the world of MS stands to be transformed,” Kuhn said. “The Society must do all it can to ensure access to MS medications. The role of volunteers in this work can’t be overemphasized.” Kuhn, who is president of the Edison Electric Institute, a Washington consortium representing the nation’s electric power companies, exemplifies the skilled volunteer leadership to which he refers. He has served the Society as a National Board member since 1997 and is a longtime trustee and chair emeritus of the National Capital Chapter in Washington, D.C. He brings deep knowledge of marketplace economics and organizational dynamics to his newest responsibility. “I can’t think of anyone better positioned to help us move into the future,” said the outgoing chair, Weyman Johnson, who received heartfelt thanks from the Society for his impressive service to the MS community. 8
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Health Care Reform: WHERE LEGISLATION STANDS TODAY
November 2009 saw passage of health care reform legislation by the House of Representatives; November and December saw historic debates in the Senate. The legislative process allows all sides to weigh in as a reconciled bill must go back and be approved by both House and Senate a second time. For updates on this developing story, please visit nationalMSsociety.org/advocacy, and go to “Update on Health Care Reform Legislation.” There you will find the latest information and some resources. In the “Update on Health Care Reform Legislation” section, find Sorting out Myth from Fact which lists major questions and concerns, with answers mainly provided by the National Patient Advocate Foundation. Other resources include Factcheck.org, a project of the Annenberg Public Policy Center, the Kaiser Family Foundation and the American Medical Association. The National MS Society works for a balanced, bipartisan and comprehensive solution that supports our Health Care Reform Principles.
ADVOCACY
Serving on a Commission in my City: Citizenship Can Be Fun By Al Tainsky
Every third Thursday of the month at 4:30 p.m., I’m at the Santa Monica Housing Commission meeting at the Ken Edwards Center on Fourth Street. I sit as one of seven commissioners who serve in an advisory capacity to the City Council and its staff. The city’s Department of Housing and Redevelopment is dedicated to preserving existing affordable housing and creating new housing opportunities for residents with low and moderate incomes. In short, the work is serious. Santa Monica, California, is an eight-square-mile city with a population of about 85,000.
I became involved in city government because I wrote a first-person piece for The Los Angeles Times that they titled, ”MS Can’t Cripple Art and Soul.” That was back in 1992.
Commissions Dinner with walnuts and blue cheese. Santa Monica’s motto is, “Populas Felix in Urbe Felici,” which translates as, ”A Fortunate People in a Fortunate Land.”
The article garnered a national writers award from the National MS Society and things started happening. I got a call from City Hall and a request that I sit on the city’s Accessibility Appeals Board. This led to a request that I sit on the Housing Commission. I’ve done so for the past eight years. They needed a commissioner who was a recipient of Section 8 housing and I fit the bill.
I can’t walk anymore but I can work to better my community. Concurrently, I’m having a blast. Did I mention that the generosity of spirit of the community is almost palpable? ‘Cause it is.
In my town the Housing Commission is but one of many that study problems and make suggestions in their area of expertise. Some of the others are the Arts Commission, the Commission for the Senior Community, the Landmarks and Historic District Commission, the Recreation and Parks Commission, and so on. All are dedicated to the betterment of those who reside within the city borders and the food isn’t bad either. Not many cities I know of would dress the salad at their annual
Interested in contributing to your own community? Consider networking with members of local boards and commissions. Make their acquaintance first at regularly scheduled public meetings. Observe hearings, and share outcomes with your network of friends. Not only will discussion be stimulating, but as an increasingly informed citizen — with knowledge of the impact of disability — you may ultimately be invited to serve. —Renee Vandlik, State and Local Government Relations for the Society
TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
D-eficient?
by Elinor Nauen Current research hopes to determine if taking D supplements could be a factor in preventing MS altogether. RESEARCH
Most people with MS—indeed, most Americans—have insufficient levels of D, which is also necessary for bone health. “That’s a strong rationale to provide supplementation,” Dr. Ascherio noted. “And it’s never too late to begin, but it’s certainly better to start earlier. Adolescence, when the risk of MS is low but is about to increase sharply, would be a good time to intervene.”
For a number of years, scientists have been exploring the link between inadequate vitamin D intake and an increased risk for a number of chronic diseases, including multiple sclerosis.
Experts are also beginning to reconsider D’s use by people with MS, especially as some early evidence suggests D might reduce relapses. Whether D helps people who already have MS is “very difficult to address without a large controlled trial,” said Dr. Ascherio. “There’s a lot of hope but it’s still an open question.”
Low D = Higher risk of MS
While waiting for answers…
“What has changed in our understanding regarding vitamin D is that we now have data showing that low levels of vitamin D in healthy young adults predict a higher risk of developing MS,” said Alberto Ascherio, M.D., DrPH, professor of Epidemiology and Nutrition, Harvard School of Public Health, and professor of Medicine, Harvard Medical School. Dr. Ascherio was the lead researcher of a large study, published in the Journal of the American Medical Association, that found the risk of MS fell as blood levels of the vitamin rose.
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While further research on the effects of D on the immune system in MS is in progress, avoiding deficiency is certainly wise. “I think it’s a good idea for most people with MS get their levels of vitamin D tested,” said Dr. Ascherio. “I’m not saying everyone should take supplements, but for several reasons, such as heat intolerance, people with MS often don’t get enough sunlight—the major source of D.” Other sources include fortified orange juice, cereals, dairy products, oily fish such as salmon and supplements. Discuss your particular circumstances with your health-care provider.
LIVING WITH MS
ORal meds for ms by gary sullivan
Ampyra (formerly known as Fampridine SR), the first oral medication specifically developed for MS symptoms, was approved in January. This medication which improves the walking speed in people with all types of MS represents a big step forward for the many people who may benefit. As of the writing of this article, Cladribine, an oral disease-modifying therapy for relapsing forms of MS, is applying for marketing approval. A potent chemotherapy drug, Cladribine kills immune T cells and B cells, both of which are thought to be involved in immune attacks in MS. These are just two of a number of MS drugs making
news. There are also the antiinflammatories: BG00012 (or BG-12), Laquinimod and Teriflunomide. Fingolimod (or FTY720), an immunosuppressant, keeps harmful immune cells out of the brain and spinal cord where they can cause the damage seen in MS. All are taken as pills. For even more information about the oral MS drugs—including clinical trials that are currently recruiting participants—visit nationalMSsociety.org/news and type the name of a drug into the search field.
The time from here to there The era of the oral MS drugs is expected to begin this year. But that doesn’t mean that every drug being tested now will be available this year—or even next. And it’s always possible that a therapy, however promising, will be sent back to the drawing board. Minocycline, an antibiotic in pill form, is currently being studied in a phase III clinical trial—the last step before submission to the FDA for approval—but the study won’t be completed until at least late 2015. And FDA approval could
take as long as six months to a year after that.
Stay in the loop Get the latest on the progress of oral meds and other MS news delivered to your inbox. Visit nationalMSsociety.org/ signup to create a user profile and start receiving Society e-mails.
get to know them by name Atorvastatin (Lipitor) BG00012 (dimethyl fumarate) Cladribine Estriol Fampridine-SR Fingolimod (FTY720) Lamotrigine (Lamictal) Laquinimod Minocycline MN-166 Pioglitazone (Actos) Riluzole (Rilutek) SB-683699 Teriflunomide
TOLL FREE NUMBER 1 800 344 4867
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MONEY MATTERS
tax time 2010 by Elinor Nauen
Just having MS may feel like more than enough to deal with, but you have to pay taxes like everybody else. There is some good news: You can potentially reduce your tax bite. Learn all you can about the allowances available to people with disabilities. First off, every penny you spend out of pocket, beyond what’s reimbursed by your insurance, may add up to legal deductions. “Many things qualify as medical expenses,” said Trudy C. Durant, an accountant in New York and New Jersey: medical equipment; supplies; insurance premiums you pay yourself; transportation and lodging (but not meals) for medically essential trips — for both you and a companion; home attendants; and doctorrecommended programs such as weight loss or smoking cessation. A physician’s letter is essential in case you’re audited. 12
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Home improvements that are primarily for medical care are also allowable. This would include air conditioners, a rollin shower, a stair lift, and an elevator. There is a catch. You can deduct what you spend minus the amount that the improvement increases the value of your property. Let’s say you installed a $40,000 swimming pool. If it raises the value of your house by $10,000, you can deduct $30,000. Costs to remove a barrier, such as widening doorways to accommodate mobility aids, are also deductible. Spending the winter in Florida? Sorry, you’re out of luck. All these deductions kick in only after you’ve paid 7.5% of your adjusted gross income for medical expenses. So, for example, if your income was $ 50,000 a year, and you spent $6,000 on medical expenses, the first $3,750 is your responsibility. You can deduct $2,250 of your $6,000 expense. Your best bet is to keep really good records, group major expenses into one tax year if you can, and take the advice of a tax professional, including the IRS itself. “Use common sense. Some potential deductions haven’t been tested in the courts. You’ll have to decide if you
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want to chance having to fight for them,” Durant said.
For more information Log on to irs.gov or call the IRS’s toll-free number: 1-800829-1040. For those who qualify, the IRS’s Volunteer Income Tax Assistance (VITA) program—with offices in many convenient neighborhood locations— helps prepare basic tax returns. Call 800-829-1040.
RESEARCH
Understanding “benign MS” by martha king
In addition to labels like relapsing-remitting MS, secondary-progressive MS, primary-progressive MS, there is something labeled benign MS for people who live with MS for years without developing any disabilities at all. Like so much else in MS, no one understands why some MS is so mild. Even the proportion of people with benign MS is unclear. Estimates range from 5% to 40% in different studies, and some doctors have even called for a halt in the use of this term. Everyone agrees that benign describes the very mildest form of MS. These people have had enough neurological symptoms and MRI abnormalities to be diagnosed — but for the next 10 to 20 years, their physical disability is mild to nonexistent.
The big catch Early on—which is the very best time to get on a disease-modifying drug—there is no way to predict who will have mild MS and who needs to start therapy as soon as possible. Teasing out the factors that distinguish the “benign” group from others would spare them from taking treatment they don’t need. The factors might also be clues to preventing more disabling MS. Researchers are eager to dig in. Investigators in Europe are pooling their imaging expertise in an ongoing collaborative MS research project called MAGNIMS. A recent report from this project warns against assuming mild MS is truly benign.* MAGNIMS researchers found cognitive impairment in up to 45% of people who had been designated as “benign.” They concluded
that testing to rule out cognitive problems is essential before a person is considered to have truly benign MS. The MAGNIMS team also saw some MRI abnormalities that suggested a future of worsening MS and they identified a connection between mild MS and a brain’s ability to compensate for damage by mobilizing other brain regions. In other words, some mild MS had caused real but hidden damage.
The best idea for now The MAGNIMS analysis adds important insights into “benign MS” — and makes a clear case for further research involving large numbers of people with mild MS. Until more is known, the Society’s National Clinical Advisory Board recommends that treatment with one of the disease-modifying MS drugs be considered as soon as possible following a confirmed MS or CIS diagnosis. To learn more, visit the National MS Society Web site, nationalMSsociety.org and look for Benign MS in our Research/Clinical Updates. *Neurology 2009;72:1693-1701. TOLL FREE NUMBER 1 800 344 4867
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WAYS TO GIVE
With our National MS Society Charitable Gift Annuity we fund medical research. We receive fixed payments for life and help scientists find a cure for MS. And it helps the MS community move forward. Contact the Society and ask how your annuity can support MS research.
Join the Movement速 in a powerful way. Contact Gillian Smith at 1-800-923-7723 | giftplanning@nmss.org
Carole, diagnosed in 2005
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Events
Benefitting the Hampton Roads Chapter The Hampton Roads Chapter would like to thank all who attended the Moscow Ballet’s performance of the Great Russian Nutcracker. In our inaugural year, we hosted 200 attendees and raised $35,000! Ballet goers were treated to a pre-show reception sponsored by Ruth’s Chris Steak House, photos with the ballerinas and the best seats in the house. The festive evening was made possible by our sponsors:
Laurie Brantley
Clark Nexsen Architecture and Engineering Atlantic Bay Mortgage Group Beach Ford Forbidden City Gold Key PHR Ruth’s Chris Steak House
The Taylors and the Huffmans
Williams Mullen Sandler Center We are pleased to announce that the partnership between the Moscow Ballet and the National MS Society continues! This partnership is extremely significant. Ballet is movement. MS stops people from moving. We are already planning this year’s premier holiday event and hope you will join us! Visit fightMS.com to reserve your tickets.
The Forbidden City Family TOLL FREE NUMBER 1 800 344 4867
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MS Awareness Week: March 8-14 Here are some exciting ways to get involved!! Flag Down MS In an effort to BE BOLD the Hampton Roads Chapter would like for you to join us as we put together a visual display to spread awareness about MS. We want to show everyone how many members of our community live with this unpredictable disease. What does 2,711 look like? TOO MANY. We will gather at Thalia Lynn Baptist Church (next to Princess Anne High School in Virginia Beach) to decorate this prominent spot with one orange flag for everyone who lives with MS in the Hampton Roads Chapter territory. Please come on out and publicly show your support for the MS Movement. Location: Thalia Lynn Baptist Church, 4392 Virginia Beach Boulevard, Virginia Beach, VA 23462 Time: 4-6 pm For more information, contact Shannon Rice or Robyn Hirsch at the Chapter at 757-490-9627. Don’t forget to wear your orange!
Fun Ways to Spread the Word
• Become a fan of the National MS Society, Hampton Roads Chapter on Facebook or Twitter. • Become a Movement Ambassador and attend the training on March 9.
Digital Downloads www.nationalMSsociety.org/get-involved/events/ms-awareness-week/ index.aspx • Use one of the MS badges as your profile picture on Facebook, MySpace and more. • Do you have a web site? Download and post an Awareness Week web banner on your site and then forward it to everyone you know who has a website. Ask them to post the banner during MS Awareness Week. Remember to have the URL click back to www.nationalMSsociety.org • Make MS Awareness Week your wallpaper on your computer screen and your signature on your emails • Donate your status update and profile picture on Facebook to MS Awareness Week! 16
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March 8-14, 2010
March 8-14, 2010 Friday, March 12 is ORANGE DAY!! • Splash Hampton Roads in MS signature orange! • Wear Orange clothing as you go about your day • Eat Orange food – pack your lunch, your kid’s lunches, your dining room table with carrots, sweet potatoes, Clementine’s, peppers, what else?? Orange you glad I didn’t say orange? • Send orange e-mails, use orange fonts on your computer
Buy the MS Flappy! They’re orange!!! Care-A-Lot Pet Supply is back for more! In past years they JOINED THE MOVEMENT with the MS Loofa Dog, MS collars, and MS treats raising over $57,000 for MS research. This year, they are taking another bite out of MS with exclusive MS Research Flappy. All of the profits from the sale of these dog toys will go towards the funding of the Promise 2010 Campaign for MS Research, a nationwide effort to raise $30 million for MS research by the end of 2010. The MS Flappys and all other MS pet products may be purchased at one of the Care-A-Lot Pet Supply retail locations or at www.carealotpets.com. Visit Care-A-Lot Pet Supply and thank them for taking a bite out of MS! Care-A-Lot Pet Supply 1924 Diamond Springs Road Virginia Beach, VA 23455 Phone: 757-457-9431 Fax: 757-460-7326 Grooming: 757-457-9482 Day Care & Boarding: 757-457-9483 Store Hours : Monday-Saturday: 8:00 AM to 8:00 PM Sunday: 10:00 AM to 6:00 PM
Care-A-Lot Pet Supply 301 Oyster Point Rd. Newport News, VA 23602 Phone: 757-969-1004 Grooming: 757-969-1099 Fax: 757-969-1216 Store Hours : Monday-Saturday: 9:00 AM to 9:00 PM Sunday: 10:00 AM to 6:00 PM
TOLL FREE NUMBER 1 800 344 4867
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Be part of bike MS: Virginia’s Ocean to Bay Ride 2010 Dig out the leotards and legwarmers, parachute pants and acid washed jeans! We’re celebrating 30 years of Bike MS in Hampton Roads. That’s right! Bike MS started in 1981 and we’re planning a party with live music by The DeLoreans! Enjoy the all 80’s show band out of Hampton Roads, Virginia. They have been named the hottest 80’s show band on the east coast and will soon be the best in the United States as they are planning trips all over as we speak! We’ll be “Dancing on the Ceiling” June 5-6, 2010 on the Eastern Shore. In conjunction with MS Awareness Week, Team Week for the Bike MS event is March 8-14. During MS Awareness Week, we will have prizes for anyone who registers, any registered cyclist who raises $250, and any team that has a 10% increase (new teams must recruit 4 + 10%). To help you recruit, registration for Team Week will be $30, or free if you spend $150 at a sponsoring bike shop, plus accommodations (the regular registration price is $45!). If you are interested in starting a team, please visit www.fightMS.com. The first person to register the team becomes the Team Captain. It only takes four or more people to make a team, so recruit friends to join you from your workplace, school, religious organization, or other group. You don’t have to join a team to ride! You can ride with a friend or volunteer! For more information, check out the enclosed brochure or call the Chapter at 757-490-9627.
Get Linked to Information about MS The National MS Society is pleased to present: March 11– Current MS Research To register, call the Chapter at 757-490-9627 or visit the Chapter’s website at www.fightMS.com. It’s so easy; participants call a toll-free number to listen to presentations from the comfort of their homes, so spread the word about this call, and JOIN THE MOVEMENT.
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VOLUNTEER SPOTLIGHT
We hope you continue to BE BOLD! and her diagnosis had not changed- neither had her symptoms. She was about to leave when she remembered what she had learned in Chicago: BE BOLD! Teresa sat back down and advocated for herself. She is now on a therapy and her symptoms are minimal. Teresa is not only a fabulous team captain, but is also a member of the Government Relations Committee and attended the Public Policy Conference in Washington, D.C. and Lobby Day in Richmond advocating on behalf of those living with MS in Hampton Roads. You may recognize Teresa from the front page of the Daily Press when she was interviewed about health care reform.
In April of 2006, Teresa Crowson experienced symptoms such as facial pain and numbness, spasticity, muscle twitches, and heat sensitivity. After five MRI’s in seven months, Teresa was diagnosed with “clinically probable MS.” By then, the 2006 Walk MS event had passed, so the Hampton Roads Chapter had to wait a year before meeting this exceptional woman. 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 $11,189! As a result of her hard work she was invited to the National Team Captains’ Rally in 2008 in Chicago. This was a turning point for Teresa. Because she was diagnosed with “clinically probable MS,” she was not taking any disease-modifying drugs to slow her progression. After returning from the rally, Teresa had an appointment with her neurologist
We even recruited Doug Crowson, Teresa’s husband, to work on the first Historic Williamsburg ChallengeWalk MS! Doug served as the Medic Support Manager on the planning committee. He recruited medics to patrol the route ensuring a safe walk for our participants. Many thanks to the Crowson Family for their dedication and activism in the fight against MS! We hope they continue to BE BOLD!
Interested in Volunteering? Check out our newly renovated Volunteer section of our website, www.fightMS.com. TOLL FREE NUMBER 1 800 344 4867
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Donations
Memorial Gifts & Tributes Honor Loved Ones The Hampton Roads Chapter of the National Multiple Sclerosis Society would like to sincerely thank the generous contributors who made memorial and tribute gifts between August 2009 and January 2010. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.
Memorial Gifts Anne Lynn Atchley Furniture Classics Ltd. Dena Hall & Stephen Lapinel Sheila Jones Gerald & Bernice Julian Paul & Nelma Julian Robert & Dorothy Julian Janet Kramer Francis Mason Dwight Schaubach Alan & Linda Vigneault William & Rachael Ward Robert Watson John & Lynda Wilgus Charles & Ann Wright Paul Baron Donald Burns David Becker Audrey Rapaport Billy Witt Branch Jim & Sharon Lane Tom & Legena Moore Jerry & Debbie Rice Suffolk Moose Lodge No. 141 Vivian Willoughby Zorah Wood Ellie Carmody Lynn Aleman Jacqueline Colosimo William Smeaton Brian Coston J.J. & Marilyn Larson 20
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Amy Fitzgerald’s Father Dr. Lang’s Office Janice Smith William & Sandra Stokesbury Charles Folz, Sr. Sharlet Davis Charles Folz III Beth Gilbert Mark Gilbert Robert Pope Richie Hafele Bonnie Kudrick Lorraine Hamilton Dare County Shrinettes Hurd and Lang, P.A. Iron Workers Local Union No. 79 Robert Patrick Kearney Wayne & Norma Ahner Thomas & Charla Barnard Robert & Yeardley Blackwell Sam & Anne Bland Terri Boeing John & Linda Bradley Lawson & Ann Byrd Al & Judy Burner Thomas & Connie Conover Wiley Cross, Jr Sidney & Marion Dixon R.J. & J.R Duke Grant & Margaret Eddy Benjamin Farner Jane Farner Herbert & Patricia Green Jerry & Karen Gustin
JOIN THE MOVEMENT: nationalMSsociety.org
Bradford & Pamela Hudgins Charlene Kearney James Kearney & Barbara Boeing Thomas & Ann Kelly Everette & Alysia Ketchum Ellen Leigh Brian & Joanne Lewis Bonnie Llewellyn Roger & Lana Loring Gail Lynn Louise Miller Amy Moore Donald & Eva Mullins Robert & Nancy Orth James & Marvella Pauls Christopher & Haley Poulson Jeffrey & Karen Quinn Bernard Robins Gary & Martha Smith Douglas Stephens & Linda Stanich Shari Stilley Kearfott & Julianna Stone Lewis & Page Strickland Rebecca Teagle Nancy Thompson Gerry Tylavsky Jill Wilkinson Ronald & Helen Worthington
If you would like to make a memorial or tribute gift, please contact the chapter at 757-490-9627 or visit www.fightMS.com
Donations
Memorial Gifts & Tributes (Continued) Memorial Gifts Robert & Ruth Yoder Stephen & Susan Young Michael Zaccone Nellie G. Lane Tonya Baker Gabrielle Glaubke Wendy Goldman Frank & Nellie Hooks Anita Hudson Neurology Specialists Mary Picano Timothy & Wendy VanFossen Elizabeth J. Lamy William & Barbara Dodds Helen Truitt Morgan Mr. & Mrs. A.V. Magnone Clarissa Odom Irene McMurtrie Robert Glover Annie Roth Olah Greif-Riverville Mill Joseph Roth Jr. Carolyn Osman Michael & Sharon Grossman Benjamin Hugh Pester Catherine Rapp Rick & Brenda Rapp Ruby F. Pierce Richard & Leslie Braun Julia Carr George & Virginia Galtress T.A. & Debra Grell, Jr James & Glenda Johnson Jean Old Nancy Parr Alice Turner
Tribute Gifts: Ellen D. Rice Armond & Betty Barefoot Charles & Irmgard Bryan Robert & Patricia Foos Jack & Shirley Mann Cameron Douglas Richardson Harold & Arlene Johnson Mamie Jordan Rob & Kathy Mathison Northrop Grumman Shipbuilding Dept. E45 Staff Northrop Grumman Shipbuilding Team Enterprise Heidi Sailer-Brophy Robert & Barbara Hain Nancy Thompson Roger & Mariann Zensen Marcia Salisbury William & Suzanne Kropfield Sharon Satcher Michele Lukas Mandy Schmidt Dennis Allion Theodore Silverstein Cathy Seidel Rita Skopal Shirley Colman Margaret Surgeonor Betty Callahan Charles & Helen Gould Penske New Billing Team Melinda Santomieri Skanska USA Civil Southeast Inc Western Branch Diesel, Inc John Van Scyoc, Jr. Bruce Brunett
Mr. & Mrs. Thomas Bell Peter Lawrence Fidelis Bickley Churchland High 1959 Reunion Denise Clarke David & Betsy Meadows Mr. & Mrs. Don Crigger Peter Lawrence Mr. & Mrs. Thomas Farr Peter Lawrence Rebecca Foss Lloyd & Alice Parcell Joel Gorelick & Sylvia Rilee Barbara Seiberling Delores Hunter’s 60th Birthday Debra Conway Michael & Amy Kelley’s Wedding Ernest & Suzanne Fudala Mr. & Mrs. Mark Lamb Peter Lawrence Mr. & Mrs. Alfred Lawrence Peter Lawrence Lauren Lawson Ralph & Bernice Compton Patricia Meola’s Birthday Carole Meola Claudia Pietras Kristin Monroe Alice Saunders Churchland High 1959 Reunion Mr. & Mrs. Randy Sklar Peter Lawrence Joseph Walat, Sr Jacqueline Rager The Ziegler Family Peter Lawrence
TOLL FREE NUMBER 1 800 344 4867
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help & Support
Financial Assistance Program The National MS Society is dedicated to reaching out and responding to individuals, families, and communities living with MS and to meeting them at their point of need. Among the many services and programs the Chapter provides is our Financial Assistance Program, a multi-faceted program that helps to address the specific challenges that living with MS can cause.
What You Can Expect? 1. The Programs & Services Department will gain information to clarify the individual’s situation and need for financial assistance. 2. The Chapter will work with the individual in need of financial assistance and help them identify services through private, community, government, and other resources. 3. Securing Funding Assistance a. If services/programs are identified, Chapter staff with help the individual access these funding sources. b. If services/programs cannot be identified or secured, the Programs & Services Department will evaluate the individual’s situation to see if it fits within the Financial Assistance Program’s criteria. If appropriate, the Department will proceed with sending the individual an application for assistance. Please note that the Chapter only provides short-term, limited, and reasonable financial assistance to individuals with MS.
Financial Assistance will be considered for the following categories: • • • • • • • 22
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General Emergency Assistance Independent Living Needs Home & Vehicle Modifications Mental Health Needs Physical Health Needs Wellness Programs Durable Medical Equipment / Assistive Technology JOIN THE MOVEMENT: nationalMSsociety.org
Those interested in learning more about the assistance that is available should contact the Chapter at 757-490-9627 or 1-800-FIGHTMS.
help & Support
Hampton Roads Chapter Self Help Group Listing For more information on any of the following groups contact (757) 490-9627 unless otherwise noted. March 3, 2010 Gloucester Group 1st Wednesday of the month @ 10 am Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA March 4, 2010 African American Inspirational Group 1st Thursday of the month @ 10:30 am Hampton Public Library 936 Big Bethel Road, Hampton, VA For more information contact D’Andre at (757) 660-3455 or deejazzu44@aol.com.  March 9, 2010 Virginia Beach Morning Group 2nd Tuesday of the month @ 10 am Kempsville Public Library 832 Kempsville Road, Virginia Beach, VA For more information contact Pete at (757) 497-6594 or peterhennessy64@yahoo.com. March 10 and 24, 2010 Williamsburg Group 2nd & 4th Wednesdays 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.
Find someone to chat with on the web at www.msworld.org
March 11, 2010 Peninsula Evening Group 2nd Thursday of the month @ 5:30 pm Sentara Careplex Hospital (York River Entrance, Conf. Rm. A) 3000 Coliseum Drive, Hampton, VA For more information contact Diana at (757) 722-2492. March 15, 2010 Elizabeth City Group 3rd Monday of the month @ 2:30 pm For group location and/or more information contact Melvin at (252) 335-9158. March 16, 2010 Chesapeake Group 3rd Tuesday of the month @ 7 pm Lifestyle Fitness Center at Chesapeake General Hospital 800 N. Battlefield Blvd., Chesapeake, VA For more information contact Margie at (757) 482-3247. March 17, 2010 Suffolk Group 3rd Wednesday of the month @ 6:30 pm For group location and/or more information contact Willie Ann at (757) 539-0139. March 24, 2010 Southside Group 4th Wednesday of the month @ 3 pm Virginia Beach Public Library 4100 Virginia Beach Blvd. Virginia Beach, VA
TOLL FREE NUMBER 1 800 344 4867
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VOLUNTEER UPDATE
Top Five Reasons to Volunteer
Next Volunteer Event Opportunity Bike MS, better known to many as the MS 150 Bike Ride, is celebrating its 30th Birthday June 5 & 6, 2010. We’re going to bike and volunteer back to the 80’s when it all began! Don’t miss out on the fun, volunteer with us in one or several of the following positions: Rest Stops, Supply Truck Driver and CoPilot, Registration, Site Breakdown, Luggage Handlers, and more! We have plenty of opportunities available, so bring your family, friends, neighbors, church or community group and have the time of your life helping others.
Volunteer Ideas?
1) Meet new people and have a great time 2) Receive training and professional development 3) Gain or improve vital skills such as problem solving, leadership, and team building 4) Enhance your resume 5) Become part of the movement to do something about MS!
We are always interested in any ideas you may have regarding ways you would like to help in our efforts to free the world of ms. If you have a specific skill you would like to offer as a volunteer: handyman work, graphic design, baking or crafts; please let us know. We welcome new ideas and new volunteers. Contact Kathy Whitlock at kathy.whitlock@nmss.org.
For More Information
Check out the new and improved Volunteer Section of our website, www.fightMS.com.
Chapter Staff Sharon L. Grossman, MSCIR Chapter President and Chief Professional Officer sharon.grossman@nmss.org Robyn M. Hirsch, MSCIR Programs and Services Director robyn.hirsch@nmss.org Karla McCarraher Office Administrator karla.mccarraher@nmss.org Michelle R. Derr Vice President of Finance and Administration michelle.derr@nmss.org Shannon R. Rice Director, Community Development shannon.rice@nmss.org Kathryn G. Whitlock Director, Special Events kathy.whitlock@nmss.org 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 know that 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 info@fightms.com with the subject line “Go Orange!”