Spring 2011
Your journey with MS. What does MS mean to YOU? Multiple sclerosis is a chronic, unpredictable and often disabling disease of the central nervous system. The progress, severity and specific symptoms of MS vary from one person to another, and may include walking, balance and coordination challenges, fatigue, numbness or issues with memory and concentration.
JOIN THE MOVEMENT® at www.moveVA.org MS Awareness Week Proclamations In celebration of MS Awareness Week, advocacy staff and volunteers have been reaching out to cities and counties all over Virginia and asking legislators to publicly commemorate the week and to educate their constituents about the disease and the importance of finding a cure. We have had an outstanding response; over 30 localities have issued resolutions and proclamations for MS Awareness Week and they’re still coming in! Here in Central Virginia: • The City of Richmond • The City of Petersburg • Henrico County have all publicly declared March 14th-20th to be MS Awareness Week in their locality!
Central Virginia Chapter 4200 Innslake Dr. Suite 301 Glen Allen, VA 23060 (804) 353-5008 www.moveVA.org Board of Directors Gregory R. Bishop- Chairman Frank N. Cowan - Chairman Elect
James E. Sok - Treasurer Suzanne L. Gardner - Secretary
Matthew Austin John M. O’Bannon, MD Jennifer L.D. Bittmann John O’Connor Susan Bodin Unsong Oh, MD David Carminucci Ronald Powell, Jr. Sharon D. Hayes Jeffrey Ruskan Mark Householder David Saunders Tracey Jeter Alan Shulman, MD Ashley Johnson Alexander H. Slaughter Glenn Nunziata Kyle Yocom Gerald T. Zerkin
Staff Sherri Ellis Chapter President - (804) 591-3030
From the Chapter President...
What does MS mean to you? During MS Awareness week March 14-20, thousands of people across our country will work to increase awareness of how MS affects individuals, families, and those they love. Please mark your calendar and let me know what you will do to bring awareness to MS. It is very important that we come together in this movement. Here are two good steps to ponder and take action on. One is to consider…
Robert McKoy VP of Operations - (443) 641-1206
Judy Griffin Director of Development - (804) 591-3034
What does MS “equal”?
Kathryn Zapach Director of Programs & Services - (804) 591-3039
Tiffany Epley Development Manager - (804) 591-3036
April Bass Community Events Manager - (804) 591-3038
Ashley Chapman VA Statewide Advocacy Manager - (804) 591-3048
Linda Pretlow Volunteer & Administrative Manager - (804) 591-3037
Matt Gregory Systems Administrator - (804) 591-3041
Melanie Hofe Finance Assistance - (804) 591-3031
Diana Oakley
For some, MS equals “uncertainty” because of the unpredictability of the disease. For others MS equals “invisible” because friends and co-workers don’t always see the hidden symptoms of MS. However, we can all agree that MS equals a “challenge.”
Manager of Finance - (804) 591-
In facing that challenge, your second step then is simple...register today and come join us on March 26th for our Richmond Walk MS or on April 9th for our Fredericksburg Walk MS. Each walk is unique, and you will have an opportunity to share what MS means to you not only during MS Awareness week, but all year long. Increase Awareness. Share your story. Until we find a Cure, 2
Sherri
Walk into Spring! Walk MS: Richmond Saturday March 26th Markel Plaza - Innsbrook Presented by
Come out and enjoy… • Chick-Fil-A selling breakfast • River City Roller Girls warm up • Music • Clowns • Kid Zone – moon bounce, popcorn, cotton candy • 2 Tents full of Vendors • Free lunch by Joey’s Hotdogs • Top Fundraiser/Team Awards Ceremony Thank you to our SPONSORS Sheltering Arms ~ Martin’s ~ HealthSouth Care Advantage Teva ~ EMD Serono ~ NTS
Be sure to register at www.IwalkforMS.org. If you have questions, please contact Tiffany Epley at (804) 591-3036 or tiffany.epley@nmss.org. We look forward to seeing you at the spring walks! You won’t want to miss this walk through historic Fredericksburg. Enjoy... • Pooch Contest • Fun warm up by Jazzercise • DJ with great music • Very COOL Face Painting • Checking out the Antique Fire Truck • Visiting the all the Vendor Tents • Free lunch by Cici’s Pizza • Top Fundraiser/Team Awards Ceremony
Walk MS: Fredericksburg Saturday April 9th James Monroe High School Presented by
Thank you to our SPONSORS HealthSouth of Fredericksburg PermaTreat ~ Mary Washington Healthcare NOVEC
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Join the Ride of Your Life! Bike MS: Ride Virginia Presented by
June 4 & 5, 2011 Richmond to Williamsburg Route Options: 25, 50, 150, 175 miles Register TODAY at www.irideforMS.org* *Early Bird Registration ends March 31st. Save $$ and get a free pair of MS cycling socks.
Pictures from our 2010 Bike MS: Ride Virginia
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Proud Presenting Sponsor of Walk MS: Fredericksburg & Petersburg 2011
Need a refresher on just how much fun you'll have at Mud Run Philly 2011? Curious about the obstacles? For our video recap and slideshow of last year's run, please visit: www.MudRunMSPhilly.com
Mud Run MS Philly is an unforgettable day of fun in the great outdoors. The event’s location in Newtown Square, Pennsylvania. offers a beautiful scenic backdrop and natural obstacles that, combined with man-made challenges, make for a truly unique 10k course. Mud Run events are what you make of them. For the serious runner or endurance athlete, it tests every aspect of your physical fitness. For the rest of us, it's a chance to challenge ourselves and play in the mud with friends while moving toward a world free of MS. Teams and individuals are welcome. Contact April Bass for info at april.bass@nmss.org. 9
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Join us for a day of fun at the Chester YMCA for MS Family Day! Sunday, April 3 from 1-4pm Chester YMCA 3011 West Hundred Road, Chester, VA 23831
Bring the whole family for: crafts • fun family photo shoot • indoor pool • games • snacks • family friendly yoga • MS water aerobics • and much more! •
Locker rooms and the indoor pool will be available for use by MS family day guests; however, workout equipment will be available for YMCA member use only. To register visit our website www.moveVA.org (click on the calendar) or call 804-353-5008. Our chapter would like to thank the YMCA for graciously sponsoring this event.
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All Self-Help Groups are different‌ how do you find the right one for you? The twelve self-help groups in Central Virginia are all unique. Each group offers members support through activities, guest speakers, informational sessions, and general conversation, while delivering the same message: You are not alone! The following two groups are new to our chapter. Each group is welcoming to all those living with MS – including those diagnosed with MS as well as their family members. In future issues of MS Connections, look for more information about the other groups in our service area. The Fredericksburg Support Group, led by Belinda, offers a positive and safe place to share the ups and downs of living with MS. Members are excited to share their stories as well as listen to each other to offer support. This group is newly formed and is open to welcoming new members. The Tri-Cities Caregivers Support Group, led by Amy, is brand new to the chapter. It is open to caregivers of all diagnoses and offers support to let caregivers know it is ok to ask for help. Come to this group to learn about resources in your area as well as to expand your support system. For meeting times, locations, and leader contact information, please see the Self-Help Group listing on the next page. If you need help locating the right self-help group for you, please contact Kathryn Zapach at (804) 591-3039.
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The Positive Thinkers 3rd Thursday at 11:30am River City Diner (Shoppes at Bellgrade Huguenot & Robious) Leaders: Gail (804) 677-6445 Hanover Group 4th Thursday - 7-8:30pm Church of the Redeemer 8275 Meadowbridge Rd. Mechanicsville, VA 23116 Leader: Dana (804) 550-2280 Petersburg Day Group 2nd Thursday - 10-11:30am River View - 201 Epps St. Hopewell Leader: Melanie (804-526-9129) Petersburg Evening Group 3rd Thursday - 6-8:00pm Southside Regional Hospital 3rd Floor Classroom Leader: Quennette (434) 246-6007 (484) 731-9069
Tri-Cities Care Giver Group 3rd Thursday - 6:15-7:45pm HealthSouth Petersburg (95 Pinehill Dr.) Open to all chronic illnesses Leaders: Amy (804) 454-0087 Kathy (804) 504-4984 Surry County Group 2nd Thursday at 11am Hope Christian Alternative (325 Banks St., Surry) Leader: Stephanie (757) 267-2329
Richmond (VA Home) For people with advanced stages of MS Every Monday - 11am 1101 Hampton St. Leader: Judy (804) 359-4093 Richmond Evening Group 2nd Thursday - 7:15-8:30pm HealthSouth - Classroom 5700 Fitzhugh Ave. Leader: Lorenzo (804) 318-0360 Tappahannock Neuromuscular Support 2nd Monday - 10:30am Call for location Leaders: Margaret (804) 472-4781 Pat (804) 443-9657
South Hill Empowerment Group 3rd Wednesday - 5:30-7:30pm for months of July-Dec 2011 Community Memorial Health Ctr (125 Buena Vista Circle) **For March-June 2011 call Starr in advance for time/location Fredericksburg Group Leader: Starr 3rd Tuesday - 7-8:30pm (434)378-2031) HealthSouth (300 Park Hill Drive) Richmond Day Group Leader: Belinda 2nd Monday - 10:15-11:30am (703) 795-5906 Tuckahoe YMCA (9211 Patterson Ave.) Leader: Sherry (804) 562-9181
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ADVOCACY
Legislative Update Once again, it has been a busy legislative season in Virginia. This year’s General Assembly session was short; state legislators only had 46 days to meet and review hundreds of pending bills! Our MS Activists were hard at work attending meetings and hearings and communicating with their state legislators. In January, over 40 MS Activists from all four chapters of the National MS Society in Virginia participated in our annual MS Legislative Action Day. They gathered in Richmond to meet with legislators and discuss our 2011 policy priorities. These volunteers asked their legislators to improve access to affordable housing, increase the efficiency and coordination of accessible transportation, expand access to expensive disease-modifying therapies, strengthen respite care programs and preserve disability rights in the workplace. In conjunction with our visit to Richmond, we held our second-annual Virtual Advocacy Day. Participants followed our advocacy efforts on Twitter and Facebook, updated their statuses and sent emails to their legislators informing them of our policy priorities. During Legislative Action Day, MS Activists spoke with their legislators about several bills that will positively impact the MS community. Here is an update on the outcome of three of those bills. House Bill 1950, Patroned by Delegate Villanueva will help people who are interested in modifying their homes for accessibility by increasing the Livable Home Tax Credit from $2,000 to $5,000 and allowing real estate developers to be eligible to receive the credit. As of time of print, HB 1950 has passed the House and the Senate and is awaiting the Governor’s signature. Senate Bill 1165, Patroned by Senator Reynolds directs the State Corporation Commission to establish limitations on the authority of electric utilities to terminate electric service to the residence of a customer who has a serious medical condition or resides with a family member with a serious medical condition. As of time of print, SB 1165 has passed the Senate and the House and is awaiting the Governor’s signature. The National MS Society also worked with Delegate John O’Bannon to introduce House Joint Resolution 579 – which would have authorized the Joint Commission on Health Care (JCHC) to study cost-sharing for prescription medication and outline solutions for making prescription medication more affordable. Unfortunately, our bill did not make it out of committee but we will work with the JCHC independently to conduct the study.
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The General Assembly has adjourned until April. However, our MS Activists are still hard at work. The Virginia Chapters of the National MS Society are hosting Spring Into Action! – the 2011 letter writing campaign. Join us by writing a personalized letter to your local or state legislator! In your letter, focus on one of our Virginia priority issues and share your story about living with MS. Policymakers appreciate hearing directly from their constituents. In fact, the thoughts and opinions you share in your letter just might influence public policy!
Public Policy Conference Our Chapter recently sponsored five volunteers and three staff members to attend the National MS Society’s Public Policy Conference in Washington, DC. Participants spent two days learning about the Society’s three federal priority issues and then spent an entire day on Capitol Hill meeting with legislators! Our Virginia delegation of staff and volunteers met with the offices of all thirteen (13) federal lawmakers from Virginia including Congressmen Randy Forbes, Eric Cantor, Bobby Scott, Rob Wittman, and Senators Jim Webb and Mark Warner. The National MS Society’s federal priority issues • Secure $15 million for MS research through the Congressional Directed Medical Research Program. For the more than 20,000 U.S. veterans diagnosed with MS and more than 400,000 people living with the disease nationwide, this funding will provide the necessary resources to explore potential environmental risks and new treatments for MS. • Pass HR 883 and S 495, the Adult Day Achievement Center Enhancement Act. This legislation is aimed to sustain and grow Adult Day programs by establishing a new grant program within the Administration on Aging that specifically targets programs for a younger population of people. Improve access to neurological care. We .For more information about the 2011 request that Congress support legislation General Assembly session or the Spring that would allow neurologists to qualify for Into Action letter writing campaign, Medicare payment incentives in order to improve access to these providers for peoplease contact Ashley Chapman, the ple living with MS. Virginia Statewide Advocacy Manager at ashley.chapman@nmss.org. You can also Follow Ashley on Twitter For more information about the (http://www.twitter.com/vaMScan) and National MS Society’s federal priority Facebook (http://www.facebook.com/ issues, contact Ashley Chapman. advocacyVA)!
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Register today for the LINKS Teleconference Series! We are pleased to present a FREE series of teleconferences on a variety of topics designed to link you with important information about living with MS. This series provides you and your loved ones eight opportunities to learn about MS from the comfort and privacy of your own home. Each teleconference is presented by an expert and the 2011 topics include: April 6, 2011: April 13, 2011: April 20, 2011: April 27, 2011: May 4, 2011: May 11, 2011: May 18, 2011: May 25, 2011:
Parenting with MS Recreation with Changing Needs and MS Intimacy and MS Vision and MS Driving with MS – How to Stay Behind the Wheel Alphabet Soup – Disability Programs & What They Mean for You Making the Most of 15 Minutes with Your Neurologist MS Research Update All calls are from 7:00pm – 8:00pm.
We ask that you register either online or by phone at least two weeks prior to the teleconference to ensure we can get the call-in information and any materials to you in a timely manner. We look forward to your participation! To register visit our website www.moveVA.org (click on the calendar) or call 804-353-5008.
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Support for our mission, income for you, a secure future for your family, whatever goal – there’s a gift to fit your needs. There are many ways to support the National Multiple Sclerosis Society and take care of you and your loved ones at the same time. Your gift can take multiple forms and can help you address your personal financial goals. You can make a gift that costs you nothing during your lifetime through your will, fund a gift annuity that will pay you for the rest of your life, or gift an asset you no longer need or want. Bequest gifts from your will or trust give to the National Multiple Sclerosis Society without affecting your cash flow during your lifetime. Gifts of retirement plan assets to the Society upon death generate no income taxes. The Society is taxexempt and eligible to receive the full amount and bypass any income taxes. Gifts of life insurance are a popular method of providing much-needed funds to a beneficiary such as the National Multiple Sclerosis Society at your death. Life insurance proceeds are almost always income tax– free to the beneficiary. Charitable gift annuity returns payments to you. Your gift to the National Multiple Sclerosis Society goes into an account that pays income to you and/or other beneficiaries for life. When there are no remaining beneficiaries, the balance in the gift account is paid to the Society for the purposes that you specified when you set up the gift.
Fredericksburg Region MS Leadership Class 2011 The MS Leadership Class honors executives for their outstanding contributions to the civic, business and cultural betterment of the Greater Fredericksburg area. These professionals conducted a fundraising campaign benefiting the Central Virginia Chapter of the National MS Society. This year’s class has already raised over $15,000 and counting! They will be our guests of honor at an awards reception March 29th, where they will receive their MS Leadership Award. Our top fundraiser this year, reaching the Mission Possible Challenge, is Maria Franklin. She raised over $3,000! Maria is the Senior Vice President & Regional Retail Bank Executive of Union First Market Bank, where she has been since 2001. She received her BS in Business Administration from the University of Mary Washington and has attended the Virginia Bankers’ Association School of Bank Management. As an involved member of her community she’s a member of the Rappahannock United Way Board of Directors, the Fredericksburg Regional Chamber of Commerce, and served two terms on the board of Rappahannock Big Brothers Big Sisters. She has helped with numerous other important fundraisers, such as March of Dimes, Heart Association, MDA, and now the National MS Society. Maria is the recipient of the 2010 Women of Distinction Award from the Girl Scouts of the Commonwealth of Virginia, as well as the 2008 Patricia Lacey Metzger Award from the Leadership Colloquium for Professional Women at the University Mary Washington. Thank you Maria for your outstanding leadership, dedication to your community, and to moving us one step closer to a world free of MS!
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4200 Innslake Dr., Suite 301 Glen Allen, VA 23060
MS Family Day at The DIAMOND! Enjoy a game with the Flying Squirrels. Sunday, May 15th Buy tickets on our website. Click on the calendar.
www.moveVA.org