Hampton Roads CHAPTER
MOVING TOWARD A WORLD FREE OF MS | summer 2012
Walk MS 2012… we still need your help! We want to give great big THANK YOU to the more than 1,000 participants who came out on April 14 at The Mariners’ Museum and April 15 at Mt. Trashmore. You made a difference in the lives of over 2,800 Hampton Roads residents and their families who live with the daily challenges of multiple sclerosis. We’re happy to announce that through the hard work and dedication of our walkers, sponsors, and volunteers, Walk MS 2012 has raised more than $93,000 so far, but we have quite a ways to go to reach our goal. These funds provide vital research and programs such as financial assistance, educational teleconferences, information and referral services, durable medical equipment, and so much more.
Remember that THERE’S STILL TIME to send in your donations! Walkers have until June 15 to turn in donations and qualify for t-shirts and prizes! We loved the continuation of the Team Village and look forward to seeing it grow! Congratulations to the winners of the Team Tent Decorating Contest: Mariners’ Museum winner Team Melissa and Mt. Trashmore winner NMITC. Each team won tickets to Ocean Breeze! Of course the Walk could not go on without the many volunteers whose hard work and dedication helped make the walks such great events!
a special thank you to our sponsors: Atlantic Bay Mortgage Group 94.9 The Point Care-A-Lot Pet Supply EMD Serono, Novartis, Teva Neuroscience Forbidden City, Starbuck’s Coffee
INSIDE THIS ISSUE
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Waterside Walk Page 3
Scholarship Program Page 4
Legislative Update Page 6
Volunteer Spotlight PAGE 18
757-490-9627 1-800-FIGHTMS
CommunitY Calendar
Publication of the National Multiple Sclerosis Society Hampton Roads Chapter 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452
Multiple Sclerosis Educational Group
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 2012 National Multiple Sclerosis Society, Hampton Roads Chapter 2
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Programs in this section are not organized by the National Multiple Sclerosis Society. The Multiple Sclerosis Educational Group is your opportunity to exchange information and coping strategies and get the latest on MS research and treatment in a comfortable and confidential environment. This program is designed for multiple sclerosis patients, caregivers, and families. 4th Tuesday of the Month at 5:30 pm Neurosciences Conference Room Riverside Medical Office Building 12200 Warwick Blvd. Newport News, VA 23601 The group is offered by Riverside Center for Neurosciences and meets on an ongoing basis. For more information call (757) 875-7880. The National MS Society Hampton Roads Chapter will hold its Annual Membership Meeting in the Fall. During that meeting the members will elect the Board of Trustees for the coming year. If you are interested in serving on the Board, or would like to propose an individual for consideration by the Nominating Committee of the Board, please submit a letter of interest and resume to: Nominating Committee Hampton Roads Chapter 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452.
Office Closing: Please note that the Chapter office will be closed June 6, 7, 8, 2012.
EVENTS
WATERSIDE WALK IS BACK IN 2012! We took Norfolk by storm last year and we’re excited to do it again in our second annual Waterside Walk MS on Thursday, July 12!
Thursday, July 12 Waterside Marketplace Check-In Begins: 5:00 pm Walk Begins: 5:45 pm
Help us make Waterside Walk MS a Norfolk tradition! This is a whole new kind of walk! Come relax with us after work for a stroll along Norfolk’s waterfront. We’ll top our evening off at Waterside Marketplace with live music and food! Come let loose and support a great cause while you’re at it! Online registration is open! Check out www.fightMS.com for details! Don’t forget— everyone who raises $100 receives a commemorative t-shirt!
TAKE THE NEXT STEP – VOLUNTEER for Stair Climb MS!
stair climb
Hampton Roads Chapter
September 22, 2012 On Saturday, September 22, 2012, the National Multiple Sclerosis Society, Hampton Roads Chapter, is holding our second annual Stair Climb MS fundraising event at the Westin Virginia Beach Town Center. Stair Climb MS is a thrilling and unique fitness fundraising event, where climbers may use any combination of walking, running and resting to ascend 36 flights of stairs in a test of endurance. We are looking for dedicated volunteers to contribute your energy and passion to help the climbers reach the top of the Westin. Some of the available positions are: Set-up/Breakdown, Information, Participant Support, Registration, Medical Support & Stair Support. For more information, contact Karla McCarraher at 757-490-9627 or karla.mccarraher@nmss.org. TOLL FREE NUMBER 1 800 344 4867
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announcements
Congratulations to the 2012 Scholarship Winner! The National MS Society and the Hampton Roads Chapter hear all too often that the economic consequences of MS delays or prevents qualified students from attending college. The challenges of living with MS make funding a college education hard and there are very few known sources of scholarship assistance specially targeted for these families. The National Multiple Sclerosis Society strongly believes that MS shouldn’t stand in the way of an education. Therefore, in 2003 the Society established a scholarship program to specifically help these highly qualified students achieve their academic potential. The Scholarship Program annually recognizes high school seniors and graduates across the country who have MS or who have a parent with MS. Scholarship finalists are chosen on the basis of demonstrated financial need, academic record, leadership and participation in school or community activities, work experience, statement of educational and career goals, an outside appraisal, unusual personal or family circumstances, and an essay on the impact of MS on their life. To learn more about the Scholarship Program, visit www.nationalMSsociety.org/scholarship.
The Hampton Roads Chapter would like to congratulate our 2012 scholarship recipient:
Leighanne Davis 4
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Have You Missed One of Our Educational Teleconferences? All of our educational teleconferences have been recorded and can be accessed on our website, www.fightMS.com. Look for the Programs & Services tab on our home page and then scroll down to the “Recordings” section. Enjoy!
Carepartner Teleconference:
Caring for Yourself While Caring for Others
Employment Teleconferences: • A 21st Century Approach to Job Searching • Get Informed: Legal Protections in the Workplace • Managing Challenging Resumes • Reinvent Yourself • Home-Based Employment: What Employers Want • Don't Do It Alone: Employment Resources
LINKS Teleconferences:
• Health Insurance: Your Rights and Responsibilities • Mental Gymnastics: The Power of the Mind to Hurt & Heal • Improving Your Lifestyle through Financial Planning • MS & Depression • At Home with MS: Adapting Your Environment • Pain in MS • Walking with MS: Fighting the Consequences of MS on Mobility • Care Options–When Help is Needed • MS Research Update
CAREGIVER
2012 Caregiver of the Year: Do you think that your caregiver is the best? Show your caregiver that you care by nominating them for the special recognition they deserve! 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.
How Does the Nomination Process Work?
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 2011 Caregiver of the year: Vincent Elia 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. The Hampton Roads Chapter will accept nominations for the 2012 Caregiver of the Year through October 1, 2012.
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 last 12 months. • 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 1, 2012 to: Mail: National MS Society, Hampton Roads Chapter Attn: Caregiver of the Year Panel 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452 Email: robyn.hirsch@nmss.org
Show your caregiver that you care by nominating them For the special recognition they deserve! For more information or if you have questions, please contact Robyn M. Hirsch, Director of Programs and Services, at 757-490-9627 or robyn.hirsch@nmss.org. 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. 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: n General Emergency Assistance n Physical Health Needs n Independent Living Needs n Wellness Programs n Home & Vehicle Modifications n Durable Medical Equipment / n Mental Health Needs Assistive Technology
Those interested in learning more about the assistance that is available should contact the Chapter at 757-490-9627
Legislative Update In early March, staff and volunteers from the across the country attended the National MS Society’s Public Policy Conference in Washington, D.C. MS Activists spent two days learning about MS Research programs and the need for federal funding and the importance of the Lifespan Respite Care Act. The work of our MS Activists is evident; as a result of our visits to Capitol Hill - 155 Representatives signed on to a letter supporting at least $32 billion for the National Institutes of Health (NIH) in Fiscal Year 2013, 68 Representatives signed on to a letter supporting $10 million for MS research in the Congressionally Directed Medical Research Programs (CDMRP), and 33 Representatives signed on to a letter supporting $5 million for the Lifespan Respite Care Program. Members of Congress are listening to our concerns and taking action! Our Activists also talked with their legislators about the Congressional MS Caucus - urging them to support their Virginia constituents by joining this esteemed group of legislators. Congressman Robert Hurt agreed to join, bringing the total number of Virginia Caucus members to six (6) – Gerald Connolly, Randy Forbes, Bob Goodlatte, Robert Hurt, Robert Wittman and Frank Wolf. For more information about our federal advocacy priorities, check out our MS Activist online blog: http://msactivist.blogspot.com and follow the Public Policy Office on Twitter @MSActivist. 6
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WAYS TO GIVE
Do It Yourself Fundraising gets boost Diverse as they are, these events are all Do It Yourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at www.doityourselfms.org, which gives the same resources as we give to Bike MS and Walk MS participants.
A family in Florida who says they like to “eat, drink and throw a good party” hosts a casino night on behalf of the National MS Society. A fellow in Minnesota sponsors an annual four-day event for four-wheeling enthusiasts to ride on trails in the middle of the woods. Other folks have hosted golf tournaments, plant sales, Motorcycle Poker Runs, car shows, dinner parties, bake sales, and even a strongman competition, a bike ride in high heels and a tabletop decorating contest.
These resources include a comprehensive toolkit that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable, where to hold it, publicity, finding sponsors and volunteers, tips for the day of the event, FAQs and much, much more. People can find out what lessons others have learned and how to create a committee—a core group that will support the effort and whose talents can be utilized. (For example, a friend who’s a graphic designer can design the invitation.) The toolkit also includes flyers, badges and email signature images to download. The online tools are very intuitive, so organizers can easily and quickly reach out to friends, family members and co-workers.
DIY theme: yard sales Whether it is a single family or the whole block, a yard sale will help you be green by recycling your “stuff” as you help provide much needed funds to help free the world of MS. And, buyers will be even more generous if you hang an MS Banner in your yard alerting them that all proceeds will benefit the National MS Society. Please contact the chapter office if you have questions or need banners.
TOLL FREE NUMBER 1 800 344 4867
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education
Management and Rehabilitation of Advanced MS Teleconference July 18, 2012 from 6:30-7:30 pm
Multiple sclerosis is a progressive disease for which no cure has yet been found. Although we have treatments to manage the disease course, they are only partially effective, which means that some people’s MS will worsen in spite of everything they and their doctors do to try and prevent it. While researchers are working to identify new and better strategies to stop that progression, people whose MS has become more disabling—and their family members and friends—need information about how to manage the challenges they face. Join us on this call as Dr. George Kraft provides a brief overview of advanced MS, a review of the current status of research on the causes and treatments for progressing MS, and practical tools for symptom management.
Guest Speaker: George H. Kraft, M.D., M.S.
• Director of the Western Multiple Sclerosis Clinical Center and Alvord Professor of MS Research • Professor, Rehabilitation Medicine and Neurology at the University of Washington in Seattle Don’t wait, register today. Registration deadline is July 10th.
For more information or to register, please call the chapter at 757-490-9627 or visit www.fightMS.com.
Meeting Caregiver Challenges Providing ongoing care and emotional support for someone with advanced MS is not easy --no matter how much one cares about that person. For many, it can begin to feel like a full-time job. Paying attention to your own health and well-being is essential to being able to do it for someone else. For information about the resources that are available to help you in your caregiving role, please give us a call at 757-490-9627.
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RESEARCH
Survey says walking issues important to address
Susan Cohn-Child, diagnosed in 1995, walks with son Zach
Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.
Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury.
Results in for potential MS therapies • In a two-year Phase III trial, the oral MS therapy BG-12 significantly reduced—by up to 51%— the average number of annual MS relapses. More than 1,400 people with relapsingremitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. • The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsingremitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review.
• A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of While 65% of those surveyed reported walking participants in each group who experienced difficulties or trouble with balance, 40% events defined as treatment failure. “rarely or never” discussed the issues with their Teriflunomide is thought to prevent damage doctor. to the nervous system by immune cells. A previous phase III trial was more successful and “Clearly we need to encourage and empower three others are ongoing. The FDA is reviewing people with MS to discuss walking impairment an application for marketing approval of with their doctor, including newly diagnosed teriflunomide. patients who may be experiencing only mild problems with walking or balance difficulties,” To stay current on MS therapies in the pipeline said Nicholas LaRocca, PhD, vice president for for FDA approval, sign up for MS eNEWS at Health Care Delivery and Policy Research at www.nationalMSsociety.org/signup. the Society. TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
The dirt on adaptive gardening Reiser points out that people need little more than a patch of ground to get started—and that patch of ground can even be in a container. Nowadays, there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact—and containers need less weeding,” Reiser points out.
A garden open to all Enabling Gardens in Angleton, Texas, south of Houston, focuses on containers and raised beds, according to Cynthia Leonard, one of two dozen active volunteers. “We welcome groups and individuals, anyone who wants to learn how to do accessible gardening,” she says. Staci, diagnosed in 1985
Gardening is one of the most popular hobbies in the United States, one that can benefit people both mentally and physically, as well as provide fresh and healthy food. “Gardening gives me control over something in a situation where I don’t always have control,” says Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.” Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension office of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasizes. “There are lots of reasons to adapt. You can put a garden at your height—on a patio, balcony, railing, steps, cinder blocks, window ledge or tabletop you can roll up to.”
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Participants learn how to use rain barrels and raised beds, and to garden most suitably for their climate. The garden has 18 planter boxes of different sizes, some of which “have a horizontal board across the top where people can sit and work on the bed.”
Lettuce at Enabling Gardens
LIVING WITH MS
a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and a cooling vest, or carry a spray bottle filled with cool water. (Call 757-490-9627 for information about cooling resources or visit www. msassociation.org/programs/cooling). Set a timer to remind you when to take a break. Ergonomic gardening tools, such as add-on handles for trowels or extendable hoes, can help make gardening tasks easier. Go to www. abledata.com and search for “garden tools” to get an idea of what’s available. Laurie Reiser (left) and volunteers transfer plants to a raised bed.
It also features an A-frame trellis called a “cattle panel” that vines, squash and cucumbers grow on. “Someone in a wheelchair can roll under it and reach right up and pick fruits and vegetables,” says Leonard, who was diagnosed with MS in 1997. Leonard’s been gardening for seven or eight years, starting with flowers in pots, then moving on to tomatoes. She and her husband “picked beets and mustard greens in January, and we had fresh tomatoes for Christmas dinner,” she says. “It sure is nice to be able to step outside and get good fresh vegetables. I know how they’ve been grown and what’s been put on the soil. Gardening gives me a sense of peace and well-being.”
Reiser suggests enlisting a buddy, such as a friend or volunteer from a Scout troop or 4-H club, to help with tasks like hauling bags of potting soil. Local community gardens, botanical gardens or garden clubs may also offer communal space and resources. Search online for barrier-free, adaptive or accessible gardening or ask your public library if they have any books on the topic to get an idea of what’s possible. And then in a few months, enjoy the fruits—literally—of your labors!
Get prepared Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late in the day. Set up a shady rest area with
TOLL FREE NUMBER 1 800 344 4867
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liVinG With MS
keepinG up With health reForM By KImBerLy CaLder
RESEARCH
Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more.
With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area. the national conference of State legislatures at www.ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor. the national academy for State health policy at www.statereforum.org offers an online network called State Refor(u)m, which enables direct connection and informationsharing between policymakers, activists and others working on health reform implementation. The federal government’s official site on the ACA at www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation 12
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To follow changes in ACA legislation and other public policy issues that specifically affect people with MS, check in with Society MS Activists at Twitter @MSactivist and visit www. MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ acaFaQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy.
MS actiViStS help add MS to coMpaSSionate alloWanceS liSt Thanks to hard work by Society activists, an aggressive form of MS now qualifies for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. Thanks to passionate and articulate testimony by MS Activists Dr. John Booss and Yvonne Brown at a March 2011 Autoimmune Hearing held by the Social Security Administration, “malignant MS” was added to the Compassionate Allowances List, allowing people with more aggressive forms of the disease to qualify for SSDI more quickly.
NEWLY DIAGNOSED
Society workshops a point of connection by helen russon Teleconferencing, videoconferencing and webcasts are a few options.
Nadja (middle), diagnosed in 2008
From the moment the doctor told me, “You have MS,” everything changed. I felt a wide range of emotions: relief (because I didn’t have a brain tumor), anger (although I wasn’t sure who to be angry at) and fear of the future. What was this disease, and how would it impact me and the people who were important to me? I had no idea what my new life would be like, or how to get started on it. Like many people, I first turned to research. This was in 1997, before the Internet was in full swing (at least at my house). So I went to the library, trying to learn about MS. I had heard about the National MS Society, but for days I was hesitant to call the number. Finally, I made the call, which led to my second-most important discovery of the year: my chapter was about to begin a series of workshops for people who had just been diagnosed with MS.
New frontiers Of course, things have changed since 1997. “Almost every home now has access to the Internet and that seems to be a primary source for information, especially for techsavvy people,” noted Mary Roberts, associate vice president of the South Central Region. “So we are doing our research to find new and creative ways to reach people.”
Peer support programs are another way to connect. Anyone newly diagnosed can call 1-866-673-7436 to have a confidential telephone conversation with a peer with MS through the Society’s MSFriends program. Or they can visit www.nationalMSsociety.org/ onlinepeerconnections to search through online profiles of trained peer support volunteers. Once matched, participants can connect confidentially and one-on-one via telephone or email. To discover the full spectrum of resources that the Society offers, call us at 757-490-9627 to be connected to an MS Navigator®. MS is not a virtual disease, and the computer isn’t a substitute for personal connection, but we are working to combine the best of both worlds, looking for ways to embrace the information age and to continue to provide the healing power of human contact.
Save the Date: Newly Diagnosed Teleconference Series MS: 101--Myth vs. Fact: Wednesday, September 5th from 7-8pm Treatment Options: Wednesday, September 12th from 7-8 pm Talking with Family & Disclosure: Wednesday, September 19th from 7-8pm Watch your mail and our website for more details as the date approaches. TOLL FREE NUMBER 1 800 344 4867
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planned GiVinG
chanGe liVeS With one Sentence Do you want to support the National Multiple Sclerosis Society, but feel overwhelmed by everyday living costs, such as the kids’ education, see-sawing gas prices and the latest home repair? There’s another way to give besides writing a check—known as planned giving— that can help you meet your financial goals. Planned gifts, which are donations made through your long-term estate or financial plans, have two main benefits: They are generally deferred until after your lifetime, so your current income or assets aren’t affected. With many planned gifts, you have the right to change your mind at any time throughout your lifetime. The easiest and most popular way to support the National Multiple Sclerosis Society and the Hampton Roads Chapter while putting your family’s current financial needs first is to include a gift in your will or revocable living trust, which is called a bequest. You can leave us a percentage of your estate—1 to 100 percent—so that no matter how the size of your estate changes over the years, gifts to your family and charities remain proportionate. BEQUEST OF RESIDUE I leave all [or ___%] of the rest, residue and remainder of my estate, whether real or personal, and wherever located, to the National Multiple Sclerosis Society of New York, New York, for its [programs at the Hampton Roads Chapter, research or general purposes]. SPECIFIC BEQUEST I leave to the National Multiple Sclerosis Society of New York, New York, for its [general purposes, research or local programs at the Hampton Roads Chapter] the sum of $_______. It takes as little as one sentence—known as bequest language—in your will or trust to complete your gift. And that one sentence has the power to support the National Multiple Sclerosis Society for years to come. Please check with an attorney or contact Sharon Grossman, Chapter President, for more information. The people with MS we serve would greatly appreciate it!
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® 14
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Walk MS
eVentS
toLL Free numBer 1 800 344 4867
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NEWS
Online Peer Support Do you currently volunteer with us in a peer support program, or would you like to learn how to do so? Are you interested in participating in a new nationwide peer support program? If yes, read on … The Society’s Online Peer Connections program is currently seeking people with MS or family members of people with MS who are interested in becoming peer support volunteers. As a volunteer, your profile would be included in an online database, searchable by demographics such as age or mobility status. Once a person with MS selects you as their peer support person, you would then arrange to speak one-on-one either via email or telephone on an agreed-upon topic. All conversations are confidential. Visit www.nationalMSsociety.org/ onlinepeerconnections, or contact Monica Aden, Online Peer Connections program coordinator, at 1-303-698-6100, ext. 15169, Monica.Aden@nmss.org to learn more.
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 robyn.hirsch@nmss.org to learn more. 16
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BLOG OPENS DOORS FOR MS COMMUNITY
Society blogger Nicole Lemelle
Fatigue, isolation, doctor’s visits—and yes, sex with MS—are just a few of the topics covered in the Society’s new blog at blog.nationalMSsociety. org.
Not much is off-limits to Society bloggers and commenters. Instead, people with MS and MS specialists dig into very personal issues— and universal ones. “In these cyber pages, we intend to open up the doors which have long been closed (by society, by our families and— quite frankly— by many of us living with MS) to discussion,” wrote blogger Trevis Gleason on January 4. “To that end, I’d like to take this opportunity to ask you—the readers of The Unspeakable Bits —what topics you think are under discussed if not just plain ignored by the MS ‘authorities’ out there?” Join in the conversation at blog.nationalMSsociety.org.
Café con Leche Invitamos a las personas hispanas/latinas con esclerosis múltiple a participar una vez al mes en un grupo telefónico gratis totalmente en español. Para más información o para inscribirse llame al 1-800-344-4867, opción 3. (Hispanic /Latino people with MS can participate by phone in a free monthly Spanish-language support group. For more information, call 757-490-9627.
Advocacy
2012 Virginia Advocacy Letter Writing Campaign This summer, join MS Activists across the Commonwealth in writing a letters to your local and/or state legislators. Tell the legislator about the legislative priority that interests you the most and share your story: Sample letter: Dear Delegate/Senator ___________ My name is ___________, I have multiple sclerosis (MS) and I am a member of the Hampton Roads Chapter of the National MS Society. Oh behalf of myself and the more than 11,000 people in Virginia living with MS I am writing to ask support for [insert legislative priority] Example: affordable prescription medication. [Your story here] Example: In December 2002, at the age of 38, I was diagnosed with MS. My MS progressed quickly and by September of 2005, I had to leave my corporate job due to my disabling condition. Life is made of defining moments and leaving my dream career due to disability was clearly one of those “moments.� Having run a division of a large company, I understand first-hand the tremendous pressure to cut spending. However, cutting health care and safety net programs for those who need them is a step in the wrong direction. In 2011, my annual medical costs exceeded $40,000. I spent over $8,000 out of pocket and drove over 1200 miles to doctor appointments. I began to take my MS drug only 2 times a week versus the 3 recommended because I simply could not afford it. I never imagined in a million years that I would become disabled due to a disease for which treatment was financially unaffordable. I hope that you remember my story when voting for legislation. Thank you for your time. Sincerely, ________________ It is important for us to track our advocacy efforts. Please send a copy of your letter to Ashley Chapman, the Virginia Statewide Advocacy Manager: Email: ashley.chapman@nmss.org, Fax: (804) 353-5595, Mailing Address: 4200 Innslake Dr, Suite 301, Glen Allen, VA 23060. If you need assistance with writing your letter or you would like tips on how to conduct your follow up legislative visit, contact Ashley Chapman at 804-353-5595.
Thank you for being an MS Activist! TOLL FREE NUMBER 1 800 344 4867
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VOLUNTEER SPOTLIGHT
A Volunteer for all Seasons: Tom Kulisz Tom Kulisz came to the Hampton Roads Chapter by order from his commanding officer in the Marines. He knew Tom was into physical fitness and “suggested” that Tom join his Bike MS Team Leatherneck NMITC in 2010, ride over 150 miles and fundraise. Tom said “sure - happy to do it”. Little did he know that he would be asked to attend the 2010 National Conference in Chicago by the Chapter and then asked to be the Team Captain of Leatherneck NMITC in 2011. At the National Conference, life changed for Tom. He met Mei Ling Perkins, a Hampton Roads Chapter Walk MS Top Fundraiser and client, and they became fast friends. Tom also learned about the MS Great 8 Ride- a cycling adventure beginning in Massachusetts and ending in Washington DC. Tom came away from the National Conference with a passion to do something about MS now and a commitment to the mission of the Society and the Hampton Roads Chapter. Tom decided he could do more and became involved on a different level – as a Volunteer. He became a part of the Bike MS and Walk MS Committees. He volunteered as Logistics Coordinator at all 3 Walks in 2011 and at the inaugural Stair Climb MS in September 2011. Tom
was everywhere! He even rode in Bike MS 2011, but he wasn’t quite himself. In fact, he was Tinkerbell. Because of a bet with Mei Ling Perkins, Tom agreed to wear a costume of her choosing if she helped him raise the $5000 needed to ride in the Great 8. She did and Tom wore the Tinkerbell costume on Saturday at Bike MS. Tom is a great sport! We can’t wait to see what he will wear this year! Tom has continued to be involved with the Chapter in 2012. He again served as the Logistics Coordinator at the Walks in April. We will be very sad to see him go when he is transferred to Camp Jejune, North Carolina in July 2012. He promises to stay in touch and involved with the Chapter. Thank you Tom Kulisz for your dedication to the Hampton Roads Chapter!
INTERESTED IN BIKE MS, WALK MS, OR VOLUNTEERING? CHECK OUT OUR WEBSITE, WWW.FIGHTMS.COM
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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.
Southside
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 Library 832 Kempsville Road, Virginia Beach, VA For more information contact Pete at (757) 497-6594 or peterhennessy64@yahoo.com. 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. Suffolk Group 3rd Wednesday of the month @ 6:30 pm Magnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA For more information contact Willie Ann at (757) 539-0139. Southside Group 4th Wednesday of the month @ 3 pm Meyera E. Oberndorf Central Library (June & July- Auditorium, August & September Libris Room) 4100 Virginia Beach Blvd., Va. Bch., VA
Peninsula
Gloucester Group 1st Wednesday of the month @ 10:30 am Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA African American Inspirational Group 1st Thursday of the month @ 11 am Hampton Public Library 936 Big Bethel Road, Hampton, VA For more information contact VeeGee at (757) 696-2540 or Veegee215@yahoo.com. Â
Williamsburg Group 2nd & 4th Wednesday of the month @ 5:30 pm James City County/ Williamsburg Community Center 5301 Longhill Road, Williamsburg, VA For more information contact JoAnn at (757) 220- 0902. Peninsula Evening Group 2nd Thursday of the month @ 5:30 pm Sentara Careplex Hospital (York River Entrance, Conf. Rm. C) 3000 Coliseum Drive, Hampton, VA For more information contact Diana at (757) 727-0427.
Connect with an MSFriend at 866-673-7436, 7am until Midnight ET. Find someone to chat with on the web at www.msworld.org TOLL FREE NUMBER 1 800 344 4867
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Stair Climb MS
SATURDAY, SEPTEMBER 22, 2012 9 AM-12 PM WESTIN VIRGINIA BEACH TOWN CENTER (4535 COMMERCE ST., VB, VA 23462) DO YOU HAVE WHAT IT TAKES TO MAKE IT TO THE TOP OF THE TALLEST STRUCTURE BETWEEN PHILADELPHIA AND CHARLOTTE? Stair Climb MS is a unique event where participants climb 36, 72, or 108 flights of stairs to the top of the Westin Virginia Beach Town Center and experience an amazing view of the Virginia Beach skyline. TEAM UP FOR MORE FUN! Forming a Stair Climb MS team is a great opportunity to share a fun experience with friends, family members or co-workers — all while moving us closer to a world free of MS. Race against the clock and see who is the fastest on your team!
stair climb
Hampton Roads Chapter
REGISTER & BEGIN FUNDRAISING As soon as you register, you’ll have access to our online tools, making fundraising easier and more convenient than ever! No minimum fundraising goal is required, but fundraising is encouraged. Don’t fret, we’ll be with you every step of the way! CLIMB CATEGORIES: REGISTRATION FEE: (Registration fee counts toward Prize Levels) Non-Competitive: 36 flights of stairs $50 Non-Competitive (Non-Timed) Military/First Responder: 36, 72, or 108 flights of stairs $50 Military/First Responder Competitive: 36, 72, or 108 flights of stairs $65 Competitive (Timed) • All climbers will receive a 2012 Stair Climb MS t-shirt and medal. • Participants will start in 10 second intervals. • Military, First Responders & Competitive Climbers will receive timing chips. • Start times will be issued prior to the event. FUNDRAISING REWARDS: • You will help provide crucial programs and services for people living with MS and their families. • You will help fund cutting-edge research to find a cure. • You may raise enough to be eligible to receive PRIZES! 36, 72, or 108 Flights of Stairs. An Unbelievable View.
A World Free of MS!
Chapter Staff Sharon L. Grossman Chapter President and Chief Professional Officer sharon.grossman@nmss.org Robyn M. Hirsch, MSSMC Programs and Services Director robyn.hirsch@nmss.org Karla McCarraher Director, Special Events karla.mccarraher@nmss.org Michelle R. Derr Vice President of Finance and Administration michelle.derr@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.
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Did you know that 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 info@fightMS. com with the subject line “Go Orange!” * Please be patient as we work out developing this new delivery method.