CENTRAL VIRGINIA CHAPTER
MS CONNECTION MOVING TOWARD A WORLD FREE OF MS |
The Central Virginia Chapter hosted its Women on the Move Luncheons in both Richmond and Fredericksburg. The Richmond luncheon was held on September 20th at the downtown Richmond Marriott and had 195 attendees raising over $36,000 for multiple sclerosis research, local programs and chapter services. The Fredericksburg luncheon was held the following day at the Fredericksburg Expo & Conference CenKeynote Speaker Zoe ter and had about 90 Koplowitz
FALL 2012
The Richmond Women on the Move Event Committee
attendees and raising over $11,000. The attendees were able to buy raffle tickets for a chance to win a shoe party hosted by Saxon Shoes, bid on a variety of silent auction items and listen to keynote speaker, Zoe Koplowitz’s inspirational story of completing 22 marathons while living with MS. The luncheon recognized the achievements of “Women on the Move” who are working hard to move their communities STORY CONTINUED ON PAGE 10
INSIDE THIS ISSUE
SHOCKOE SHUFFLE PAGE 4
MONEY MATTERS PAGE 6
NEW ORAL THEARPY PAGE 8
MAKE YOUR VOTE COUNT PAGE 18
MSCONNECTION Central Virginia Chapter 4200 Innslake Dr., Suite 301 Glen Allen, VA 23060 804.353.5008 Www.moveVA.org BOARD OF TRUSTEES Chairman: Frank N. Cowan Chairman Elect: Matthew Austin Treasurer: James E. Sok Secretary: Suzanne L. Gardner Sharon Barcalow Gregory Bishop Jennifer L.D. Bittmann Susan Bodin David Carminucci Charlie Colpo Mark Householder Ashley Johnson Glenn Nunziata John O’Bannon, MD John O’Connor
Unsong Oh, MD Jeffrey Ruskan David Saunders Richard Schoepke Daniel B. Shoop Alan Shulman, MD Alexander H. Slaughter Robert A. Vallejo James VanNess Philip J. Wallin Kyle Yocom Gerald Zerkin
STAFF Sherri Ellis Chapter President - (804) 591-3030 Robert McKoy VP of Operations - (443) 641-1206 Kathryn Zapach Director of Programs & Services - (804) 591-3039 Tiffany Epley Development Manager - (804) 591-3036 Linda Pretlow Volunteer & Administrative Manager - (804) 591-3037 Jessica Ramirez Community Outreach Coordinator - (804) 591-3038 Matt Gregory Systems Administrator - (804) 591-3041 Deborah Richards Development Events Coordinator- (804) 591-3034 Christian Tiller Development Team Coordinator- (804) 591-3035 Diana Oakley Manager of Finance - (804) 591-3042 Melanie Hofe Finance Assistance - (804) 591-3031 Ashley Chapman VA Statewide Advocacy Manager - (804) 591-3048 * Please Note: these are direct phone numbers for staff. The Main Office phone number is still (804) 353 -5008 or 1-800-FIGHT MS.
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.MoveVA.org or try our office phone at (804) 353-5008 to learn about ways to help manage Multiple Sclerosis and about current research that may one day reveal a cure.
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FROM THE CHAPTER PRESIDENT... Dear Friends, A world free of multiple sclerosis—it’s not just a slogan, but the Vision of the National Multiple Sclerosis Society. Your local chapter works very hard to identify needs throughout Central Virginia and to find ways to meet those needs. Oftentimes, the biggest way to fulfill the need and make the biggest impact is to partner with other organizations. Partnerships are critical to delivering quality services and we look forward to continuing to build and strengthen relationships within our community. Businesses and corporations of all sizes, along with hundreds of individuals, have partnered with the MS Society to make a difference in people’s lives through the giving of their time, talent and resources. The reasons people give are quite simple—they care. Even in a tough economic climate, we focus our resources on our top priorities including hosting successful events and offering quality programs and services. Our annual giving campaign has identified specific needs for 2013 that we need your help to support. As the demand for emergency financial assistance, college scholarships, and research dollars continue to increase, so does our commitment to fulfilling those needs. Those who live with MS cannot pick or choose how or when MS will affect them, but you can chose when you decide to personally commit to giving. I look forward to your call to talk about how you can partner with the MS Society for A World Free of MS.
The Best is Yet to Come,
Sherri
2012 WALK SEASON The 2012 Walk season continues this Fall with walks in Tappahannock and Petersburg.
WALK MS: TAPPAHANNOCK September 15, 2012 Tappahannock Memorial United Methodist Church
Thank you to our Walk sponsor:
We had 158 participants and raised over $17,500 Thank you to our walkers!
We have ONE more walk left for 2012 WALK TO CREATE A WORLD FREE OF MULTIPLE SCLEROSIS
WALK MS: PETERSBURG October 6, 2012 Historic Old Towne Petersburg Be sure to register and start fundraising today at
www.iwalkforMS.org Questions or need more details? Contact Deborah Richards at 804.591.3034 or Deborah.richards@nmss.org
BE BOLD! Volunteer at the walks or at other chapter events. To learn about the opportunities available, contact Linda Pretlow at 804.591.3037 or linda.pretlow@nmss.org 3
FIRST ANNUAL SHOCKOE SHUFFLE A GREAT NIGHT Shuffle‐goers having a great time raising awareness for MS! Photo Credit: NightLifeVirginia.com, Chris Malo
Members of the Central Virginia Chapter’s Board of Trustees and Chapter President, Sherri Ellis, raising a glass to finding a cure for MS! Photo Credit: NightLifeVirginia.com, Chris Malo
On Thursday, August 9th the Central VA Chapter of the National MS Society hosted the first ever Kai Shockoe Shuffle. Over 80 people came downtown The Lucky Buddha for a fun night that included a tour of many of Cha Cha's Cantina Shockoe Bottom's hottest restaurants and bars. A The Tobacco Company glass was raised to fight MS and close to $4,000 was raised to assist local families affected by MS Thank you to our Shockoe and fund critical research! Shuffle sponsors! Richmond.com Thank you to the participating restaurants: New Belgium Brewing Major Willy's The Fish Bowl Bistro 4
MS KIDS CAMP 2012 REFRESHING MOUNTAIN CAMP “CAMPERS WERE ABLE TO TALK ABOUT HOW MS AFFECTS THEIR LIVES IN A SAFE AND UNDERSTANDING ENVIRONMENT WHILE DISPELLING MYTHS AND FEARS ABOUT THE DISEASE .” Staff, volunteers and children from the Central Virginia Chapter pose for a group picture. For the second year, the chapter took 15 children from Central Virginia to Refreshing Mountain Camp in Stevens, Pennsylvania to join over 120 other children from the Western Pennsylvania, Central Pennsylvania, and Metro Jersey Chapters for a weekend of swimming, high ropes, crafts, and summer fun. Although some campers were attending MS Kids Camp for the first time, they all came to camp with a common bond – they all have a parent or guardian living with multiple sclerosis.
While at camp, campers were able to talk about how MS affects their lives in a safe and understanding environment while dispelling myths and fears about the disease. Camp also provided a fun environment where the campers could be themselves and not worry about responsibilities they may normally have at home due to their parents’ disease.
Thanks for the great campers and wonderful volunteers who joined us this year!
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FDA APPROVES ORAL TERIFLUNOMIDE– BRAND NAME AUBAGIO® – AS DISEASEMODIFYING THERAPY FOR RELAPSING MS brain and spinal cord. Aubagio (pronounced oh-BAH-gee-oh) is a novel oral compound that inhibits the function of specific immune cells that have been implicated in MS. It is related to leflunomide, a drug used to treat arthritis. Aubagio can inhibit a key enzyme required by white blood cells (lymphocytes), reducing the proliferation of T and B immune cells active in MS and also inhibiting the production of immune messenger chemicals by T cells. It is not thought to affect resting immune cells that are “We are greatly encouraged to see a new oral not in an activated state. Two doses (7mg and therapeutic option be14 mg) have been apcome available to peo- “With the collaborative research proved. ple living with MS,” ad- underway around the around tovised Bruce A. Cohen, Potential benefits: Three day, this is an extremely hopeful MD, Professor, Davee large clinical trials of time for anyone who is diagDepartment of NeurolAubagio have been comogy and Clinical Neuropleted, and at least two nosed with MS.” sciences at Northwestmore are ongoing. In the ern University’s Feinberg School of Medicine, phase III TEMSO study, Aubagio reduced the and incoming Chair of the National MS Socieaverage number of MS relapses and disease acty’s National Medical Advisory Committee. “As tivity on MRI scans significantly more than inwith any new therapy, the long-term safety of active placebo in 796 people with relapsing Aubagio will need to be carefully monitored,” forms of MS. he added. Dr. Timothy Coetzee, Chief Research In a recently completed phase III TOWER study Officer at the National MS Society agreed. involving 1,169 people with relapsing“With the collaborative research underway remitting MS, oral Aubagio reduced relapses around the world today, this is an extremely hopeful time for anyone who is diagnosed with compared with placebo over at least 48 weeks, according to a company press release. Of two MS.” different doses tested during the TOWER trial (7 mg and 14 mg), the higher dose also slowed About Teriflunomide/Aubagio: Multiple scleprogression of disability. rosis involves immune system attacks on the The U.S. Food and Drug Administration has approved teriflunomide once-daily pills (Aubagio,® Genzyme, a Sanofi company) to treat relapsing forms of MS. This is the second oral disease-modifying therapy approved for the treatment of multiple sclerosis. The therapy is expected to be available for prescription by October 1, 2012 in the U.S. The company has also applied for regulatory approval in other parts of the world.
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Potential risks and screenings: In trials to date, Aubagio was generally safe and well tolerated. The most common side effects experienced by participants in clinical trials include diarrhea, abnormal liver tests, nausea, flu, and hair thinning. The prescribing information includes a boxed warning related to the potential for liver damage in persons taking Aubagio. There is also a warning that Aubagio is not indicated for women who are pregnant or women with childbearing potential who are not using reliable contraception. The prescribing information also contains information on how to clear Aubagio from the system in case that is required.
After starting Aubagio, blood tests to detect liver enzymes should be done at least monthly for the first six months, and then patients should be monitored for signs of liver damage. Patients should also be monitored for signs of infection, and blood pressure should be checked periodically.
Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration. Selecting an MS therapy should be done by people with MS in collaboration with their MS doctors, taking into account a variety of factors, including the effectiveness of any therapy they are currently using, and weighing potential risks and benefits, costs and lifeBefore people begin taking Aubagio, they should style factors. have a blood test, of have had one within six months, to detect levels of liver enzymes and lev- Physicians and people with MS can contact Genels of blood cells (Complete Blood Count). They zyme for information about Aubagio and patient should also have their blood pressure checked, support programs by calling: 1-855-676-6326, or visit the company’s Website: and have a screening test for tuberculosis www.MSOnetoOne.com. (tuberculin skin test). It should be verified in women of childbearing potential that they are For More information or to view the full article not pregnant before taking Aubagio. visit: www.nationalMSsociety.org
ANNUAL MEETING THURSDAY, NOVEMBER 15, 2012 6:00-7:30 PM Central Virginia Chapter Office 4200 Innslake Drive Glen Allen, VA 23060 Come be part of board elections* and hear the accomplishments our chapter has made to help overcome the challenges of everyone living with MS. Light refreshments will be served *Nominations for the MS Board of Trustees are being accepted from our
MS membership. If you are interested, contact Sherri Ellis at 591.3030. 9
The Central Virginia Chapter’s newest support group for people living with MS in their 20’s and 30’s!! As a My Solutions member you will:
Stay connected with other members everyday on our Facebook page, Share thoughts and participate in weekly discussion topics, Learn about MS related events happening in our area; and Develop new relationships, and make friends who, just like you, understand the daily challenges of being young with a Multiple Sclerosis diagnosis.
(PLEASE NOTE: This is a special group designed for younger adults under forty years of age. All participants will be screened by Chapter staff prior to full registration to ensure they comply with the age requirements.)
For more information about My Solutions or to sign up, visit: http://bit.ly/MySolutions or contact Jessica Ramirez at 804.591.3038 or Jessica.ramirez@nmss.org.
Women on Move (continued) Thank you to our Richmond Sponsors: CowanGates and Saxon Shoes Thank you to our Fredericksburg Sponsors: Saxon Shoes and Union First Market Bank
From Left to Right: Chapter President Sherri Ellis, 2012 Fredericksburg Woman on the Move Honoree Laurie Gallup, and Event Committee members Dana Houck and Dana Herlong.
forward in both business and community service. Both events were well attended and enjoyed by all. Please visit www.moveVA.org for more details about this event and our Facebook page to see additional pictures. 10
Central VA Chapter President Sherri Ellis awarded the 2012 Richmond Woman on the Move Award to Lisa Germano.
JOIN THE MOVEMENTWITHOUT LEAVING YOUR OFFICE Designate the National MS Society Central Virginia Chapter in your employee giving campaign Every year, millions of employees support nonprofit organizations nationwide through employee giving campaigns. If you are a public employee or your private employer offers a charitable giving campaign, you can help move us closer to a world free of MS by designating a contribution to the National MS Society. Most charitable giving programs offer employees the opportunity to make an annual pledge, which means a portion of their donation is automatically deducted from each paycheck. Donations can also be made as a one-time contribution by writing a personal check. The National MS Society is a member of Community Health Charities. Public employees (federal, state or local) have Community Health Charities as a choice in their workplace giving campaigns. Simply designate the desired contribution amount and the gift will be automatically deducted and donated to the Central Virginia Chapter of the National MS Society. Private companies may or may not offer Community Health Charities as a giving option to their employees. An employee can talk to their benefits administrator about starting an employee giving program if the company doesn’t offer one.
WANT TO GIVE AT THE OFFICE? Participating in your employer’s charitable giving campaign is an easy way to give! The following codes will directly benefit the Central Virginia Chapter!
CVC#’s
Federal 46654 State 6090 United Way# 3025 CFC# 46654
Participating in a charitable giving program is an easy way to help provide vital services, spark public policy advocacy, and fund cutting-edge research. 11
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MS KILLS CONNECTION CONNECTION KILLS MS G I V E W HAT YOU KNO W:
MSconnection.org 13
DO IT YOURSELF (DIY) FUNDRAISING TO BENEFIT THE CENTRAL VIRGINIA CHAPTER Do It Yourself (DIY) Fundraising is an opportunity for people with a deep commitment to the MS cause to raise awareness and critical funds for the MS Movement in new and creative ways. Formerly known as Community Events, DIY Events are essential to the success of our organization. Activities can include golf tournaments, galas, dinner parties, bake sales, endurance events, simply asking your friends, and more! And now, DIY fundraisers can utilize our online DIY Tool Kit and fundraising tools to set up a group or individual activity, recruit members to join your event, and solicit donations online. RECENT DIY FUNDRAISERS: Pearl’s Cupcake Shoppe Benefit June 2012
MS Night at Greek Islands Restaurant September 25, 2012
5812 Grove Ave., Richmond, VA 23226
9503 W. Broad St., Richmond, VA
“Cupcakes for a Cure” Donated a portion of their proceeds to the National MS Society
Donated a portion of the day’s proceeds to the National MS Society
Vineyard Vines September 13, 2012
Diane Shelton ‘s 5K ‘Wave Goodbye to MS’ Fundraising Walk November 2012 Diane is raising money on behalf of her daughter who is living with MS. Her goal is to raise $1,500 for MS research, programs and services.
9200 Stony Point Parkway, Richmond VA Gave 10% of their proceeds from 6-8pm to the National MS Society.
To learn more about how you can hold an event to benefit the Central Virginia Chapter of the National MS Society, click on the DIY Fundraising button on our website: www.moveVA.org or contact Linda Pretlow at 804.591.3037 or linda.pretlow@nmss.org. Get started today, join the movement and together we can all help to create a world free of MS! 14
ENOUGH IS ENOUGH
DO SOMETHING ABOUT MS NOW Today, we are putting our collective foot down and declaring this instant the time to take action. We have reached the point when individual efforts can be made exponentially stronger through support and collaboration – through an MS research revolution. NOW, we stand together to raise $250 million to fuel MS research. Research that will STOP MS in its tracks. Research that will RESTORE what’s been lost. Research that will END MS forever. NOW, we need everyone to be a champion in the MS Research Revolution. We have committed to raise $250 million by the end of 2015 for MS research, and it will take each and every one of us to make sure we reach our goal. NOW. No Opportunity Wasted. Please join us now in our mission to achieve a world free of multiple sclerosis. To make a gift, call 804.353.5008.
CHALLENGE WALK MS WAS HELD ON SEPTEMBER 22-23 The Central Virginia Chapter was represented by Team River City Walkers in this year’s two day, 30 mile Capital Challenge Walk. River City Walkers had only four team members—Dan Shoop, Caren Shoop, PJ Wallin and Michael Wallin—but topped their fundraising goal of over $6,000! Way to go! Congratulations & thank you River City Walkers for your hard work!
MS CROSSWORD PUZZLE MS can be quite a “puzzling” concept to wrestle with. Here’s a crossword puzzle to help put all of that “MS” knowledge to the test! ANSWER KEY ON PAGE 19
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Across impulses. 2. Loss of bowel/bladder control 20. The protein that forms layers around the nerve 4. Join the ____________. fibers and acts as insulation. 7. The ____ __ ____ is a collective of passionate in- Down dividuals who want to do something about MS now! 1. _________-modifying drug 8. The only oral disease-modifying drug approved for 3. Approximately 85% of people are initially MS. diagnosed with ______ _______. 11. ______ Phenomenon (Sensitivity to heat) 5. _______Neuritis (visual impairment) 12. ______ types of MS (number of disease courses) 6. The Society's largest signature fundraiser. 14. The number of self-help groups in the Central Va 9. The National MS Society’s vision. Chapter area. 10. Symptom associated with balance issues and nau16. Lack of physical or mental energy sea 17. ________Impairment (thinking problems) 13. Number of FDA-Approved Disease-Modifying 19. Periods of increased inflammation in the central Drugs nervous system (CNS) that causes damage to the 15. ________Nervous System (CNS) myelin and slows or blocks the transmission of nerve 18. Multiple Sclerosis For more information about any of these topics, please visit: www.nationalMSsociety.org.
Hanover Group 4th Thursday - 7-8:30pm Church of the Redeemer 8275 Meadowbridge Rd. Mechanicsville, VA 23116 Leader: Dana (804)550-2280
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
Petersburg Day Group 2nd Thursday - 10-11:30am River View - 201 Epps St. Hopewell Leader: Melanie (804)526-9129
South Hill Empowerment Group 3rd Wednesday - 5:30-7:30pm Community Memorial Health Ctr (125 Buena Vista Circle) Leader: Starr (434) 378-2031
Tappahannock Neuromuscular Support 2nd Monday - 10:30am Call for location Leaders:Margaret(804)472-4781 Pat (804)443-9657
Petersburg Evening Group 3rd Thursday - 6-8:00pm Southside Regional Hospital 3rd Floor Classroom Leader: Quennette (434) 246-6007 (804) 731-9069
Richmond Day Group 2nd Monday - 10:15-11:30am Tuckahoe YMCA (9211 Patterson Ave.) Leader: Barbara (804)747-0298
Chesterfield Day Group 3rd Wednesday - 12-1pm Johnston-Willis Hospital Board Room Leaders: Sheila (804)739-8488 Sharon (804)794-7589
Richmond Evening Group 2nd Thursday - 7:15-8:30pm HealthSouth - Classroom 5700 Fitzhugh Ave. Leader: Lorenzo (804)921-9712
The Invincibles 3rd Tuesday - 7-8:30pm HealthSouth-Fredericksburg (300 Park Hill Drive) Leader: Belinda (540)373-4377
My Solutions—Online, Facebook Support Group for Young Adults in their 20s & 30s To sign up, visit: http;//bit.ly/ MySolutions or Contact Jessica at (804) 591-3038
Group times and locations may vary, so be sure to check with group leaders prior to attending! 17
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ANSWER
FINANCIAL ASSISTANCE MS not only affects an individual’s body but also can greatly impact someone’s ability to maintain employment and thus, manage their expenses. We recognize the challenges faced by people with MS. Therefore, the Central VA Chapter provides financial assistance to help people living with MS manage emergency expenses. Please help someone in need this Holiday Season. A gift of $250 or more will enable an individual with MS and their family move their lives forward. Thank you for your support of those Central Virginians living with MS.
My Contribution to Making a Difference! Make your 2012 tax-deductible year-end gift today to help 2,500 Central Virginians living with MS. Yes! I want to help people living with MS with my Year- End gift! ___$50___$100 ___$250 __$500 __$1,000 ___Other $_____
I would like to direct my gift (optional) ___Emergency Financial Assistance ___Local Programs and Services ___Provide for a family this holiday ___Research to find a cure!
You can make your donation securely online at www.moveVA.org Name on Card_________________________
Type of Card ______________________
Card Number_________________________
Expiration Date____________________
Security Code______________________ Mail checks or cut-out this form and send to: National MS Society– Central Virginia Chapter 4200 Innslake Drive, Suite 301 Glen Allen, VA 23060
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4200 Innslake Dr., Suite 301 Glen Allen, VA 23060
Find us on Facebook MSCentralVA Follow us on Twitter @MSCentralVA
www.moveVA.org NMSS Scholarship Program Opens October 1
UPCOMING PROGRAMS & EVENTS SATURDAY, OCTOBER 6 2012 Walk MS: Petersburg THURSDAY, OCTOBER 11 Dinner of Champions THURSDAY, NOVEMBER 15 Annual Meeting To register for or to get more information about these or other events, visit www.moveVA.org and click on the calendar.
The National MS Society awards scholarships to highly qualified applicants who have been diagnosed with MS or have a parent/guardian living with the disease. Awards range from $1,000–$3,000 and are awarded to college-bound students who demonstrate financial need, a strong academic record, leadership, community involvement, and how MS has impacted their lives. Applications are accepted between October 1, 2012 and January 11, 2013.
Apply online at www.nationalMSsociety.org/ scholarship. Only completed online applications will be accepted. The National MS Society Scholarship program is supported by funders like you! Did you know you or your company can sponsor a 2013 scholarship and help make a difference in a student’s life? Contact Kathryn.Zapach@nmss.org to learn how.