SUMMER 2014 CENTRAL & EASTERN VIRGINIA CHAPTER
MS CONNECTION NEWSLETTER
BIKE MS: RIDE VIRGINIA PAGE 04
INSIDE 03 THIS ISSUE
CHALLENGE WALK MS
MILES OF SCARVES CHALLENGE PAGE 09
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BECOME A MOVEMENT AMBASSADOR
FINANCES AS A FAMILY
PROMISING MS TREATMENTS
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MS CONNECTION: SUMMER 2014
CHAPTER NEWS
LETTER FROM THE PRESIDENT Dear Friends, Did you know that Walk MS is the 7th largest walk in America and Bike MS is the 5th largest fundraiser in America? It was great seeing you at one of our many spring events such as Walk MS, Bike MS: Virginia’s Ocean to Bay Ride, a Women on the Move Luncheon, or spending time with you at self-help group meeting. Knowing that we are all part of a big organization that is focused on what you want most—a cure! Now that summer is here, staff and volunteers are busy planning for our fall events—Bike MS: Ride Virginia on September 6 and 7 from Richmond to Williamsburg, Challenge Walk MS on September 6 and 7 in Easton, Maryland, and our Dinner of Champions honoring Anne Marie Whittemore on October 9 in Richmond. As you continue to read in this issue, you will find out more about what the Central & Eastern Virginia Chapter has in store for you and ways to connect with others just like you. I know you agree with me that the National MS Society is the best investment for solutions for those living with MS. The Best is Yet to Come,
Sherri Ellis Chapter President
WALK MS
WOMEN ON THE MOVE LUNCHEON
BIKE MS
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EVENTS
CHALLENGE WALK MS ONCE IN A GREAT WHILE, A CHALLENGE CALLS THAT YOU SIMPLY MUST ANSWER. Challenge Walk MS is a 2-day, 30-mile experience that tests your strength and spirit, and makes an extraordinary difference in the lives of 2.3 million people living with MS worldwide. Could you walk 30 miles in 2 days on the Eastern Shore to help find a cure for multiple sclerosis? Accept the Challenge, create a team, fundraise and spread MS awareness far and wide.
CHALLENGE WALK MS: CHESAPEAKE CHALLENGE SEPTEMBER 6 - 7, 2014 EASTON, MD THE WALK WILL CHALLENGE YOU, THE EXPERIENCE WILL CHANGE YOU. For more information or to register, contact Clare Lorio at 804-591-3037 or clare.lorio@nmss.org.
NATIONAL MULTIPLE SCLEROSIS SOCIETY CENTRAL & EASTERN VIRGINIA CHAPTER Richmond Office: 4200 Innslake Drive, Suite 301 Glen Allen, VA 23060 Virginia Beach Office: 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452 1-800-344-4867 • www.MSVirginia.org Chairman: Frank N. Cowan Chapter President: Sherri Ellis Design: Robyn M. Hirsch © 2014 National Multiple Sclerosis Society, Central & Eastern Virginia Chapter
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 MS 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 or contents of any product or service mentioned.
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EVENTS
KEEP ON PEDALING TOWARDS BIKE MS: RIDE VIRGINIA (PRESENTED BY PAGE AUTO GROUP) Didn’t get enough of cycling at our Bike MS: Virginia’s Ocean to Bay Ride? Maybe you were not able to join us for that ride? Or maybe you just like rolling hills as you pedal through the heart of Virginia from Richmond to Williamsburg? Then you are in luck! We have another great Bike MS gearing up – Ride Virginia. On September 6 & 7, 2014, enjoy the scenic roads of Central Virginia as you travel past historic sites and rustic farmlands embarking on an unforgettable journey. You will be pedaling along with hundreds of cyclists riding to create a world free of MS! This fun ride is fully supported with rest stops every 10-15 miles, Support and Gear (SAG) vehicles, Medics and bike support from sponsoring bike shops. The sense of accomplishment that you’ll feel as you cross the finish line can only be matched by the knowledge that you are making a difference in the lives of people affected by MS.
ROUTE OPTIONS: Choose from several different route options, including short routes, century options each day, and a one day ride. • One Day (Sunday, September 7th): 25 or 50 miles • Two Day (Saturday, September 6th–Sunday, September 7th): 75 or 100 miles each day
DON’T DELAY, REGISTER TODAY Registration fee (accommodations not included)=$45 Register online at www.irideforMS.org or by phone at 757-319-4253.
BIKE MS: RIDE VIRGINIA PRESENTED BY:
Scan this QR code to visit the Bike MS website.
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EDUCATION
CAREPARTNER TELECONFERENCE SERIES This two week series will be held Tuesday nights (7-8 pm) on August 5 and 19, 2014. Both calls will be conducted using a toll-free number, so you can call from the comfort of your home. Participate in both calls or just the one that interests you.
AUGUST 5TH, 2014 AT 7 PM: STRENGTHENING FAMILY RESILIENCE The registration deadline for this call is July 29, 2014.
AUGUST 19TH, 2014 AT 7 PM: HOW TO MAKE YOUR LIFE EASIER The registration deadline for this call is August 12, 2014. To learn more or to register, contact the chapter at 804-353-5008 option 2 or visit our website MSVirginia.org.
WAYS TO GIVE
AUTOS-4-MS When you donate your car, truck, motorcycle, boat or trailer to the National MS Society, you can feel good knowing that 100% of the proceeds go directly toward benefitting people with MS. Proceeds fund vital research into the cause, cure, and treatment of MS, as well as programs and services for people living with multiple sclerosis.
TO START THE DONATION PROCESS: • Call our toll-free number, 1-877-672-8864, or submit the electronic donation form found at www.AUTOS4MS.org • A towing company will contact you to schedule your pickup • A receipt will be mailed to you after the completed sale transaction of the vehicle. For answers to all your questions, please visit www.AUTOS4MS.org or call our office at 1-877-672-8864.
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EVENTS
2014 WALK MS A GREAT SUCCESS Thank you to every walker, volunteer and fundraiser who made this year’s Walk MS season a tremendous success. With over 3,900 walkers across the 5 sites, we reached fundraising heights like never before that will support research and local families: Newport News – $58,970 Virginia Beach - $74,181 Richmond - $177,534
Fredericksburg - $82,873 Kilmarnock - $11,526
TOTAL - $405,084
Fundraising continues through July 10, 2014, but we want to thank the following individuals and teams that to-date rank in our top 10 for individual fundraising and team fundraising:
TOP INDIVIDUAL FUNDRAISERS: 1. Donna Utsunomiya - $9,681 2. Greg Orlick - $7,010 3. Doug Yocom - $6,770 4. Mandy Mallory - $6,750 5. Lisa Hollier - $6,402 6. Karen Smith - $6,354 7. Lee Nelson - $4,810 8. Jim Van Ness - $4,230 9. Charles Sforza - $4,125 10. Ellen Johnson - $3,313
TOP TEAMS:
1. PermaTreat - $16,550 2. Team Yocom - $15,290 3. Atlantic Bay Southsiders - $13,339 4. INRIans - $11,031 5. Hollier’s West End Walkers - $9,238 6. Team CanAm - $8,205 7. Keep on S’myelin - $7,715 8. CowanGates - $7,105 9. Caren’s Crew - $6,895 10. Charissa’s WestEnd Crew - $6,010
Are you interested in serving on a Planning Committee for our 2015 Walk MS Events? If so, please contact Clare Lorio at 804-591-3037 or clare.lorio@nmss.org.
THANK YOU TO OUR PRESENTING AND DIAMOND LEVEL SPONSORS: Virginia Beach Presenting Sponsor:
Fredericksburg Presenting Sponsor:
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EVENTS
WOMEN ON THE MOVE LUNCHEON VIRGINIA BEACH
RICHMOND
On June 10th, 120 individuals joined us for the inaugural Hampton Roads Women on the Move Luncheon at the Founders Inn and Spa in Virginia Beach. Katie Collett, morning and midday anchor for WAVY/FOX 43 news, served as the Mistress of Ceremonies and shared a personal message about living with MS. Katie believes “you can’t find a cure if you’re quiet” –and we couldn’t agree more. Celebrity speaker and singer, David Osmond also shared his story about the challenges of living with MS and inspired all with his powerful message of hope through his music. David acknowledges that he has MS, but MS does not have him. This inspiring luncheon raised over $18,000 and we are looking forward to growing in the years ahead.
Over 260 attendees gathered at the Downtown Richmond Marriott on June 12th for our Women on the Move Luncheon in Richmond. The Chapter was pleased to honor Tracy Kemp Stallings of HCA Virginia as the 2014 Woman on the Move for her passion to provide quality health care to the greater Richmond area, as well as her involvement in the community. County music singer and song writer Julie Roberts shared her story of living with MS and performed some of her hits to show that she is not letting MS stop her from doing what she loves. The luncheon raised over $75,000 to help fund cuttingedge research and provide local programs and services.
We would like to extend special thanks to our Gold Sponsors: Clark Nexsen and the MS Center of Tidewater.
We would like to extend special thanks to our Presenting Sponsor Bon Secours Richmond Health System, as well as recognize our Gold Sponsors: PriceWaterhouseCoopers, Wells Fargo, The Landmark Company, Madison+Main, Union First Market Bank and CowanGates.
2014 WOMEN ON THE MOVE HONOREE TRACY KEMP STALLINGS
Are you interested in serving on a Planning Committee for our 2015 Women on the Move Luncheons? If so, please contact Bobby Holt at robert.holt@nmss.org or 757-490-9627 x46207.
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MS CONNECTION: SUMMER 2014
RESEARCH
STATINS AND SECONDARY PROGRESSIVE MS BY MIKE OLEX
MRI can tell us a lot about the progression of multiple sclerosis (MS). The two measures, which are used to evaluate response to a therapy in MS are lesion activity and shrinking (atrophy) of the brain. The majority of MS patients start off with relapsing-remitting MS. However, nearly half of all patients transition to Secondary Progressive MS (SPMS) within 10-20 years of disease onset and at present there is no known drug to minimize progression at this stage. One of the major concerns is atrophy in SPMS. It’s been shown that the brain volume can decrease between .7-1.0 percent annually. A recent study evaluated statins to determine if they could slow (or stop) brain atrophy in SPMS. We have all heard about statins under different brand names (Lipitor® or Zocor®) for control of our cholesterol. They work by inhibiting production of cholesterol in the liver but also have wonderful benefits in neuro-protection and anti-inflammation. Clinical trials were completed in Europe evaluating the use of statins in SPMS. The goal of the study was to evaluate statins in minimizing brain atrophy. The study looked at approximately 140 patients and found a difference between the two groups of almost 43% in the amount of atrophy. These are promising results. If atrophy were minimized it may help preserve brain function. Further research is planned to evaluate the use of statins in relapsing remitting MS and how lesion burden is affected. As existing therapies have shown a great ability to control lesion level; the two could be complementary to help preserve the brain in its entirety. Mike Olex, author of (MS)2 – MS Science Made Simple , is a former physicist who married a biological researcher. As you can guess, current scientific literature is a standard topic at their dinner table. As a person living with MS, he’s using their combined scientific expertise to see what’s on the horizon in helping with this condition and breaking it down into laymen’s terms so you don’t have to be an MS researcher to understand advances in science that could impact you or someone you know. Jeremy Chataway, Nadine Schuerer, Ali Alsanousi, Dennis Chan, David MacManus, Kelvin Hunter, Val Anderson, Charles R M Bangham, Shona Clegg, Casper Nielsen, Nick C Fox, David Wilkie, Jennifer M Nicholas, Virginia L Calder, John Greenwood, Chris Frost, Richard Nicholas. Effect of high-dose simvastatin on brain atrophy and disability in secondary progressive multiple sclerosis (MS-STAT): a randomised, placebo-controlled, phase 2 trial. The Lancet, March 2014 DOI: 10.1016/S0140-6736(13)62242-4
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GIVING
MILES OF SCARVES CHALLENGE We are at a pivotal moment in time where significant progress is being made and breakthrough solutions can change the world for everyone with MS. Finding solutions for people with MS is our highest priority, and through funding research, we will be able to achieve our goals of stopping MS in its tracks, restoring lost function, and ending MS forever. Read below to learn how Meredith Polk, a Richmond area high school student, and Miles of Scarves have raised money to support the National MS Society. They now need your help to fund a local MS research project at Virginia Commonwealth University.
A FUNDRAISING CHALLENGE FROM MILES OF SCARVES
In 2009, when I was in the fifth grade, I learned that the longest scarf in the world was knitted for charity. Since I knew how to knit, I taught some of my friends to knit and started Miles of Scarves. We knit scarves and sell them to raise money for the National MS Society. Over the years, almost twenty girls have participated in Miles of Scarves and we’ve raised over $20,000 to sponsor rest stops on Bike MS, scholarships for graduating high school seniors who have a parent with MS, and provide a family impacted by MS with gifts around the holidays. With your help, we hope to have an even greater impact. We are challenging you to match our gift of $2,500 to go towards a local research project. If seventeen donors match our $2,500 donation, then we will have raised $45,000 to fund Dr. Unsong Oh’s research project to investigate a novel compound for preventing nerve tissue damage in mice with an MS-like disease. I met Dr. Oh when we toured his VCU lab and was impressed with the equipment, research, and the hard work that he and his colleagues are putting into finding a cure. Money to fund projects like Dr. Oh’s is vital because research is the only way to improve treatments and find a cure. As a small gesture of appreciation, we will gladly knit you a custom scarf if you contribute a gift of $1,000 or more towards this challenge. While Miles of Scarves has made huge strides already, the only way to make a difference is with your help. With your generous contribution, we could fund the research that leads to a cure. Thank you for your consideration, Meredith Polk Founder, Miles of Scarves
IF YOU WOULD LIKE TO MAKE A MATCHING MILES OF SCARVES GIFT, PLEASE CONTACT KATHRYN ZAPACH AT 804-591-3039 OR KATHRYN.ZAPACH@NMSS.ORG.
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EVENTS
BIKE MS: VIRGINIA’S OCEAN TO BAY RIDE Another memorable Bike MS: Virginia’s Ocean to Bay Ride is wrapping up! As we reflect on the miles behind us and smile at the memories from a beautiful weekend on the Eastern Shore, we want to thank the 400 cyclists and 200 volunteers who took to the roads on May 31 & June 1, 2014. Through their amazing efforts, the event has raised $445,000 to date. Our goal is to surpass the 2013 total of $480,000 by the fundraising deadline, August 1, 2014. Let’s keep pedaling toward that goal together and finish 2014 strong!
TOP INDIVIDUAL FUNDRAISERS: 1. Ron Brodsky–$26,654 2. Jeff Kerr–$17,525 3. Glen Pierce–$13,125 4. Craig Pierce–$6,914 5. Jill Scaplen–$6,660
TOP TEAMS:
1. Pedalin’ with GP–Glen Pierce: $51,703 2. TBA CLAMS–Joe & Polly Frease: $47,053 3. Team Munden–Ron Brodsky: $29,454 4. Sprocket Protectors–Joe Bushey: $28,069 5. “Heroes Live Forever”–Jeff Kerr: $25,931
THANK YOU
The success of Bike MS comes from the dedication of the cyclists, volunteers, and sponsors who share our mission of creating a world free of MS. Many thanks to our 2014 Bike MS Sponsors:
Clark Nexsen
IES Commercial
Bay Mechanical
Atlantic Bay Mortgage Group
We also could not do it without our Breakaway Bike Shop Sponsors who provided bike mechanics along the route during the course of the Bike MS weekend. Thank you to BikeBeat, Conte’s Bike & Fitness, Fat Frogs – Chesapeake, Scat Bikes, and Village Bicycles.
REGISTER NOW FOR 2015—FOR THE LOWEST REGISTRATION RATE OF THE YEAR
From now until August 1, registration for 2015 is $15 plus accommodations. On August 2, registration will go up to $25 plus accommodations. The 2015 website is not open yet. Please contact Karla McCarraher at 757-319-4253 or karla.mccarraher@nmss.org to register for 2015 Bike MS.
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PROGRAMS
BECOME A MOVEMENT AMBASSADOR INSPIRE. EDUCATE. MOVE. Educating and engaging thousands of people in the movement to end MS is a big job and the National MS Society, Central & Eastern Virginia Chapter can’t do it alone. That’s why we are recruiting volunteers for our Movement Ambassador Program.
WHAT IS A MOVEMENT AMBASSADOR?
Simply put, Movement Ambassadors are people who want to do something now to end MS and are passionate about engaging other people in the movement. Movement Ambassadors are people connected to MS in some way, whether by living with the disease, participating in our events, volunteering or donating to our organization. Individuals in each one of these groups has a story to tell and can be a part of our mission!
HOW DO MOVEMENT AMBASSADORS HELP?
The primary role of Movement Ambassadors is to engage others. Movement Ambassadors can do a wide range of awareness activities from simply talking to someone about your involvement with the National MS Society to manning information tables at local health fairs and providing presentations to community groups. Movement Ambassadors act as an army of people spreading awareness about MS and the National MS Society in our local community.
HOW CAN I BECOME A MOVEMENT AMBASSADOR?
If you are interested in becoming a Movement Ambassador or would like more information, please call or email Robyn Hirsch at 757-319-4252 or robyn.hirsch@nmss.org. Interested volunteers will be trained to be spokespersons representing the National Multiple Sclerosis Society, Central & Eastern Virginia Chapter and will be provided with all needed guidelines and materials.
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ADVOCACY
THE ACA MAKES A DIFFERENCE BY BETH VANDIVER
As anyone living with multiple sclerosis knows, having good health insurance is important. My name is Beth Vandiver, and because of the Affordable Care Act (ACA), I now have access to the health care I need. I was diagnosed with MS in 2010. I was teaching second grade and on my way driving to work one day in August, I thought I was having a stroke. My left side went numb and I had trouble staying in my lane. I made it to the classroom, but my students and coworkers knew something was wrong. I went to a neurologist and had an MRI, then received my MS diagnosis. Since then, I have experienced many relapses. My vision is affected, and I have painful back spasms. Stress really exacerbates my MS symptoms, so I eventually had to quit teaching school. Once my COBRA ran out, I tried to get an individual plan, but was refused because my MS was considered a pre-existing condition. Without health insurance, I often went without treatment because I couldn’t afford visits to the doctor or medicine. I just tried to pull through as best I could. The ACA changed all that for me. Insurance companies are no longer allowed to refuse to cover someone because of a pre-existing condition, so I was able to get health insurance from the same company that had initially refused to cover me. In addition, my premiums
MS ACTIVIST BETH VANDIVER are half of what they were on COBRA. And I found out at www.healthcare.gov that I qualify for premium and co-pay assistance. I am not going to let MS overtake me, and now that I have access to health care, I can afford the drugs that help keep me active and healthy. I am currently studying to be a paralegal; I also work four days a week substitute teaching. Laws like the ACA impact everyone living with MS, and lawmakers need to understand that state and federal legislation relating to health care affect real people like me. I am going to get involved in MS activism and share my story with my elected officials, so they understand why access to affordable health insurance is so important. For information on how you can become an MS activist, visit www.nationalMSsociety. org/advocacy. Originally published in South Central MSConnection.
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ADVOCACY
WANTED: MS ACTIVISTS ADVOCATE ON BEHALF OF PEOPLE WITH MS AND VISIT YOUR LEGISLATORS IN THEIR DISTRICT OFFICES THIS SUMMER Summer is the ideal time for MS Activists to set appointments with their elected officials and begin to forge important relationships. The 2014 regular session of the Virginia General Assembly has adjourned. However, our state legislators remain hard at work in their local offices–close to the constituents they serve. Likewise, our federal legislators will be in their district offices during their August recess. We need YOU to participate in our summer indistrict visit campaign. Join us as we meet with legislators to talk about MS and how it impacts the lives of Virginians. Your personal story may be the catalyst for change that improves the quality of life for people living with MS. If you would like to represent the National MS Society and the Central & Eastern Virginia Chapter during our in-district visit campaign, please contact Kathryn Zapach at kathryn. zapach@nmss.org or 804-591-3039. Kathryn can guide you through the process of setting up a visit and will review the National MS Society’s priority issues and talking points with you.
SUPPORT & ADVERTISING OPPORTUNITIES Help the Chapter share important information about research, programs, services and events by supporting our Newsletter. You may sponsor the entire issue, or take out a full, 1/2 or 1/4 page ad....the opportunities are endless! Contact Robyn M. Hirsch at 757-319-4252 or robyn.hirsch@nmss.org to learn more.
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MONEY MATTERS
FINANCES AS A FAMILY BY PAM EVASON, CFA, CPA
We share many things with our immediate families–daily routines, closely guarded secrets, vacations, holidays and life milestones. However, many families don’t share one key element of their lives with one another— finances. Whether it’s one spouse who handles the responsibility or parents not including their children in financial discussions, it’s rare for the entire family to discuss financial matters. This could be for any number of reasons, including feeling insecure about finances, not wanting to burden others with financial issues, the belief that such topics are not enjoyable to share, or the limited discussions we had growing up within our own families. However, a collective understanding of financial matters among all members of the family is beneficial on many fronts. Discussing these topics in an open and honest fashion can increase knowledge, lower fear, and encourage positive actions. Here are some Do’s and Don’ts when it comes to making financial matters a family affair.
DON’T TREAT IT AS A TABOO SUBJECT
Bring financial topics up in day-to-day conversation, discuss issues in front of your family, ask them for their input and advice on financial decisions you are facing, and share
financial articles or books you’ve read. Work to keep the lines of communication open, and with time, such discussions will become second nature.
DO TEACH CHILDREN OF ALL AGES ABOUT FINANCES
Start at an early age by discussing age-appropriate financial concepts, such as how to save money in a piggy bank. Build upon these concepts as your children grow. With older children, you can help them open a bank account and begin discussing compound interest and investing. Other great financial topics to talk about with children include careers and income, budgeting and credit.
DO SHARE YOUR MONEY JOURNEY – THE GOOD AND THE BAD
When discussing your financial history with your partner, spouse or children, it is easy to omit the less-than-favorable parts. Perhaps you misused credit in the past or you haven’t maximized your retirement savings. But don’t leave these out – every portion of your money journey presents a teachable moment. Stay open and honest and encourage other family members to learn from the full range of your experiences.
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DO INVOLVE THE FAMILY IN PHILANTHROPIC EFFORTS
For many of us, charitable giving is an important element of our financial lives. No matter the size or scale, donating to causes we care about holds great significance and personal meaning. Involvement of the family in this process can help illustrate how money can be used as a tool to make the world a better place. Consider asking your spouse and/or children to research a charity they would like to support. Encourage your children to save their own money to donate to a cause. Share any letters of appreciation and stories you receive with your family.
DON’T AVOID DIFFICULT TOPICS
There’s no doubt that discussions about estate planning and wealth transfer can be challenging. Nonetheless, sharing key financial information with spouses, children and/or elderly parents will serve to reduce fear and uncertainty for all involved. More importantly, it will save significant confusion, stress and worry in the future should the unthinkable occur. Possible information to discuss includes: • Names and contact information for your key tax, legal and financial advisors • Personal data (social security numbers, account numbers, passwords for financial websites) • The location of important documents • A summary of your cash and investment accounts • Any legal arrangements, such as wills, and who you have designated to carry out key legal and financial tasks
• Directives (medical and/or financial powers of attorney)
DON’T HESITATE TO SEEK PROFESSIONAL ADVICE
If you feel uncertain about how much you know about financial topics such as budgeting, retirement goals and investments, reach out to an advisor who can help you understand better, and whose insights you can then share with your family. Consider having family members join you for these meetings. They will be able to ask any questions they may have and feel like active participants. The Society’s Financial Education Partners program offers pro bono financial planning and education to people with special health or financial circumstances. Call 1-800-344-4867 to learn more, or visit www. nationalMSsociety.org/financialplanning. Pam Evason, CFA, CPA is Managing Director at Windermere Wealth Advisors, LLC, an investment advisory firm located in Milwaukee, Wis., and a member of the Wisconsin Chapter’s board of trustees. This article is for informational purposes only. It is not a substitute for professional guidance and assistance in planning your financial future. The matters discussed here are provided as a starting point for further discussions with an investment professional familiar with your specific situation.
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EVENTS
NEW TRADITION AT BIKE MS: VIRGINIA’S OCEAN TO BAY RIDE—RICK POWELL AWARD A realignment of two Chapters, translates into two Bike MS events to host in one year. When the staff started discussing Ride Virginia’s traditions and best practices, we learned of the Bruce Lowery Award. This award is named in honor of a cyclist living with MS and is presented at the event to a cyclist or volunteer that has gone above and beyond that year for Bike MS: Ride Virginia. This year we decided to incorporate this tradition into the Virginia’s Ocean to Bay Ride. When it came to naming the award for Bike MS: Virignia’s Ocean to Bay Ride, it was an easy decision. Rick Powell is Bike MS in the Hampton Roads area. When Rick was first diagnosed with MS over 30 years ago, he stopped by the Chapter office in search of more information about MS and hoping to connect with others. Rick was an avid cyclist and heard that the Minnesota Chapter started a new fundraiser called the MS Bike Tour. He thought it would be great to bring that event to Hampton Roads; therefore, Rick worked side-by-side with the Chapter to get Bike Tour started in the area. That was 1981! Rick has been involved in all 34 Bike events in Hampton Roads– either as a cyclist or a volunteer. Rick’s cycling years are now behind him, but it does not stop him from being a part of Bike MS. He serves on our Bike MS: Virginia’s Ocean to Bay Ride Committee and volunteers in our office. Rick is truly amazing and an inspiration to all of us! Rick was presented with the award at Bike MS: Virginia’s Ocean to Bay Ride on May 31. From this year forward, the award will be known as the Rick Powell Award. Thank you Rick for your years of dedication to Bike MS and our Chapter!
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EVENTS
DINNER OF CHAMPIONS—SAVE THE DATE
Honoring Anne Marie Whittemore McGuireWoods, LLC October 9, 2014 The Jefferson Hotel, Richmond, VA Dinner Chair J. Alfred Broaddus, Jr., Retired President Federal Reserve Bank of Richmond
------------------------------Vice Chairs -----------------------------Thomas N. Allen
The Clovelly Corporaation Peter J. Bernard Bon Secours Virginia Health Systems Grace R. den Hartog Owens & Minor Mary C. Doswell Dominion
Steven A. Markel Markel Corporation Thurston R. Moore Hunton & Williams Michael Rao Virginia Commonwealth University
Joseph K. Reid McGuireWoods, LLP James E. Rogers Retired Linda V. Shreiner MeadWestvaco James E. Ukrop New Richmond Ventures
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LIVING WITH MS
WHAT MS LOOKS LIKE BY ELIZA EASTMAN
Multiple sclerosis has been a part of our family for a long time—for my entire life, in fact. I am now 15 years old. My grandmother, whom I call “Meme,” was diagnosed with MS when my mom was just a little bit older than me. I was not even a thought then—imagine that! Having MS as a part of our family is not easy. For a long time they did not know what was “wrong” with Meme and that was probably the hardest part of all. Once she was diagnosed, it was a little better, but still difficult. There were times when she could not walk or could not see. I am proud of my Meme, as she is a strong lady, which I hope to be some day, too. She loved her job as a librarian and worked as long as she could. She has many loves: she loves to read and has always tried to get my sister, brother and me to love it, too. She loves to sew and we have quilts that she has made for us. She loves to shop (when her legs allow her to) and she loves to spend time with her grandchildren. One time, Meme went sliding with us in giant inner tubes down a snowy mountain, a day that we will never forget. She often comes to watch me play soccer or my brother play hockey. She now uses a walker or cane, and I am so glad that she does because they allow her to be with us.
ELIZA EASTMAN WITH HER MEME, CHARLENE HUFFMAN I have never really looked at my Meme as someone who has MS; I am not sure what that person would look like. Instead, I know what Meme looks like and she is someone who is strong, fun and loves her family a lot. If that is what someone with MS looks like, I think that is OK! Eliza Eastman is a sophomore at Hampden Academy in Maine, and plans to become a physical therapist or dentist. Provided by the Greater New England Chapter.
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CHAPTER NEWS
CONGRATULATIONS TO OUR 2014 SCHOLARSHIP WINNERS 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.
CONGRATULATIONS CLASS OF 2014! WE WISH YOU MUCH LUCK AND SUCCESS. TOP SCHOLAR:
Luke Mainwaring Deep Run High School Glen Allen
Shardae Davis Huguenot High School Richmond
Megan Hill Floyd E. Kellam High School Virginia Beach
Supremia Bostick Woodside High School Newport News
Wendelle Sparrer Gloucester High School Gloucester
Abby Mainwaring Deep Run High School Glen Allen
Kathryn Aloma Cosby High School Midlothian
Marisa Deschenes Tabb High School Yorktown
Maya Williams Menchville High School Newport News
Information about scholarships for 2014-15 will be available on the National MS Society website on October 1st. For more information, call 1-800-344-4867 or visit www.nationalMSsociety.org/ scholarship. Interested in honoring a loved one by sponsoring a 2015 scholarship? Contact Kathryn Zapach at Kathryn.zapach@nmss.org for more information.
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MS CONNECTION: SUMMER 2014
RESEARCH
PROMISING MS TREATMENTS BY BRUCE BEBO, PhD
I was impressed by the number and quality of studies on emerging therapies for multiple sclerosis presented at the 66th Annual Meeting of the American Academy of Neurology (AAN) in April 2014. One of these studies was a clinical trial of the pregnancy hormone estriol combined with Copaxone in 164 women with relapsing-remitting MS. The investigators determined that estriol plus Copaxone reduced the rate of relapses after one year by 47% compared to women taking Copaxone alone. There were also significant positive benefits observed in cognition test scores. These effects were less significant in the study’s second year – the reasons why are not clear, but a more thorough analysis might reveal some answers. In most cases, studies presented at the AAN are considered preliminary until they are analyzed more thoroughly and published in peerreviewed medical journals. Read more at www. nationalMSsociety.org/phase2estriol.
The number of active brain lesions detected at the end of the trial was moderately reduced by 34%, and there was also evidence that treatment promoted the activity of disease-suppressing white blood cells. These results need to be repeated in a larger number of participants before making definite conclusions. But imagine if we could treat MS with a sports drink?
THE ‘HYGIENE HYPOTHESIS’
Two studies suggested that a small molecule named IRX4204 may inhibit inflammatory responses and promote the repair of myelin. These early-stage animal model studies must be followed up in people with MS before we get too excited, but I find the possibility of a one-two punch to MS pretty exciting.
The “hygiene hypothesis” proposes that the increased frequency of autoimmune diseases like MS in industrialized countries is due to reduced exposure to infectious bacteria, viruses and parasites. This hypothesis was tested in a University of Wisconsin study in which participants drank a sports drink laced with the eggs of a pig parasite called porcine whipworm every two weeks for 10 months.
TARGETING B CELLS
I was also intrigued by a phase II trial that tested ofatumumab – which targets a type of white blood cell called a B cell and which is already approved for the treatment of B cell cancers – in MS. Study investigators reported a 65% reduction in the number of active brain lesions in the treated groups compared to the placebo groups – pretty impressive. These results suggest that targeting B cells is a very promising approach for treating MS.
A ONE-TWO PUNCH
QUIT NOW
Previous studies have shown that smoking can increase the risk of developing secondary-
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progressive MS by as much as threefold. The good news reported at the AAN meeting is that this risk is reduced by 5% for every year after a person quits smoking. The reasons why smoking promotes progression remain to be determined, but I think we know enough now to know that people with MS who smoke should stop—today.
UNDERSTANDING PROGRESSIVE MS
Did you know that according to www. clinicaltrials.gov, there are 57 ongoing clinical trials testing a variety of therapies for progressive forms of MS? While we still wait for definitive data, some early results were presented this week. Clinical trials of Gilenya found a consistent reduction in the rate of brain atrophy (shrinkage). Since many believe atrophy is a consequence of neurodegeneration, and in turn that neurodegeneration is probably responsible for progression, this is a strong hint that Gilenya might be able to slow down progression. Several reports suggest that laquinimod may also be a good candidate for the treatment of progressive MS. Laquinimod might suppress the activation of microglial cells, which are the only immune cells that live exclusively inside the central nervous system. While these cells are important for protecting the nervous system from infections, overactive microglia may promote and prolong inflammation. Another study looked more closely at previous clinical studies of laquinimod in relapsing MS and found evidence that treatment significantly slowed progression and reduced brain atrophy even in study participants who didn’t have relapses.
Non-pharmacological approaches for slowing progression are also being tested. I learned that an herb called Curcuma longa, commonly known as turmeric, contains a compound called Ar-tumerone. This compound can reduce the activity of microglial cells and also promote the proliferation of neural stem cells, which are the source of nervous system cells that have potential to regenerate nerves and oligodendrocytes (myelin-producing cells that are damaged in MS). Although research is at a very early stage, Curcuma longa strikes me as a very interesting candidate for the treatment of progressive MS.
RESULTS ON DIET
The first-year results of a low-fat, plant-based diet in MS were reported by a group from Oregon Health and Science University. While the team failed to show any measurable clinical or imaging (MRI) benefits, participants did lose an average of 16 pounds and had significantly improved cholesterol levels. The study’s small size probably limited the ability to detect changes, but I am encouraged that it developed a model for other trials of MS diets to follow. Bruce Bebo, PhD, is the Society’s associate vice president of Discovery Research.
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MEMORIAL & TRIBUTES The Central & Eastern Virginia Chapter would like to sincerely thank the generous contributors who made memorial and tribute gifts between February and May 2014. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.
MEMORIAL GIFTS Stanley Becouvarakis Lorene Culotta Carolyn Bond Alpha Theta Master Chapter Carol Hackworth June Zapach Glenn Harbula Marian Calder Cecelia Clemons Matthew Coppage Pamela De Ridder Darlene Elliott Wendi Gajewski Chuck and Stacy Hansen Jean Leighton Melissa Matherly Joan Powers Theresa Marchetti Isom David Padilla Ralston Family Laura Scott Teresa Price Donna Brown Irene Lombardi Caroline O’Brien
Teresa Price continued Dale Scott Kathleen Shelton Mary Sturgill Arthur Samuel Leonard Meisels Mandy Schmidt Dennis Allison Catherine “Kay” Spaan Dwight Beamon Pattye Hickey Fred Hueber John Mattern Barbara Walsh Marlene Pearlman
TRIBUTE GIFTS Sandra Alston & Dawn Gunn Sandra Alston Carole Darden Marvin Gunn Becky Harris Rhonda Joyner Katherine Panikowski Sharon Ballard Lisa Einsel
Alice Barr & Bob Cummings Ruth Dow Whitney Darden Julie Darden Keith Lloyd Sylvia Morgan Joyce Meiggs Alice Savage Stephen Paddison Lynnhaven Middle School Barbara Squitieri Tiffany Epley Arethea Thornhill Joni Sult David & Allison Weisenberger Paul Weisenberger
IF YOU WOULD LIKE TO MAKE A MEMORIAL OR TRIBUTE GIFT, PLEASE CONTACT THE CHAPTER AT 804-353-5008 OR VISIT MSVIRGINIA.ORG.
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WAYS TO GIVE
IN LOVING MEMORY Denise Slinkard and Gary Creakbaum first met during the fall semester of their sophomore year at Purdue University— September 1970, to be exact. Just four months after their first date, Gary presented Denise with an engagement ring. And, a little more than a year after that first meeting, the two were married. They attended classes together each morning and went to part-time jobs in the afternoons. They finished their humanities degrees and graduated together in 1973. “Life was good, and we knew it,” he says. Life continued to be wonderful after college. The couple moved every few years for work, which meant buying a new home and enjoying new communities. They also continued to travel. Denise had experienced a few symptoms of multiple sclerosis during college, but they didn’t receive a diagnosis until 1974. “We did not let MS slow us down,” Gary says. “We just assumed it would be something that would be cured and she would be fine.” They enjoyed life to the fullest, but MS continued to take its toll. By 1989, Denise’s deteriorating health required additional support and, in a short 15 years, the Creakbaums went from being sure of a cure, to trying everything available, to the realization that Denise would not be “fine.” Denise passed away in February 1994. “I miss Denise and to this day think of her and wonder
GARY AND ELLEN CREAKBAUM MADE A PLANNED GIFT IN HONOR OF GARY’S FIRST WIFE, DENISE (SHOWN ABOVE). why this had to happen to such a bright, beautiful young woman with a promising future,” Gary says. He has since remarried, and he and his wife Ellen have made the National MS Society a beneficiary in their will. “Making a planned gift allows us to have a say in how our money is used after we are gone,” he says. “We wanted to benefit causes that are important to us.” Gary believes that if enough people give even a small amount, the impact could be huge. “Denise’s spirit will live on through this gift to help future generations win the war against MS and enjoy the cure,” he says. To learn more about how you can give, visit www.nationalMSsociety.org/plannedgiving.
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MS CONNECTION: SUMMER 2014
BIKE MS: VIRGINIA’S OCEAN TO BAY RIDE
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EVENTS
DO IT YOURSELF FUNDRAISING Do it yourself (DIY) fundraising events are an opportunity for those in the community to help us raise awareness and critical funds for the MS movement in new and creative ways. From Dance-a-thons to Poker Runs, each event brings diverse crowds together in support of our mission. Simply put, these DIY events are as unique as the people we serve. Special thanks to those who organized recent Do It Yourself fundraisers to benefit the Central & Eastern Virginia Chapter:
DANCE-A-THON—hosted by Victory Ladies Fitness-Richmond
One of the instructors at Victory Ladies Fitness is living with MS; therefore, several instructors rallied together to hold a 3 hour dance-a-thon fundraiser on June 7th. Over 200 people came to the event and it has raised $2,150 so far—with more still being collected! Way to go Wendy Messner and Victory Ladies Fitness!
POKER RUN AND CONCERT WITH JULIE ROBERTS—hosted by
Richmond Harley Davidson & Steel Horse Harley Davidson On May 17th, over 200 bikes came out and raised $5,711 to benefit the Central & Eastern Virginia Chapter. Thank you to George Wills, Audra Davenport, and all those who helped with the event!
There are endless possibilities to creating a DIY fundraising event. No matter what you choose to do, how you do it or when, the Chapter is available to help and support you. Check out the DIY Fundraising area on the “Join an Event” section of our website, MSVirginia.org. We provide lots of tips and tools to help you organize your event. Interested in hosting a DIY event, contact Debbie Cole, Development Manager, at debbie.cole@ nmss.org or 804-591-3043.
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MS CONNECTION: SUMMER 2014
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 MS 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 information call 757-875-7880.
CAN DO MULTIPLE SCLEROSIS WEBINARS Join Can Do MS live from the convenience of your home, at no charge, for an in-depth discussion on topics relating to exercise, nutrition, communication, symptom management and total health. July 8, 2014: 8 – 9:15 p.m.: MS Symptoms Part I: Unique Approaches to Unique MS Symptoms Have you ever wondered if there are novel approaches to managing one or more of your MS symptoms? Join this webinar to discover unique ways to deal with your symptoms. Learn about new strategies to help make your symptoms more manageable and improve your quality of life. Participate in this interactive program, ask the speakers questions directly, and find ways to handle your issues with weakness, balance, heat sensitivity, fatigue and more. August 12, 2014: 8 – 9:15 p.m.: Recognizing & Rebounding from an MS Relapse Relapses are unpredictable occurrences in multiple sclerosis, and it helps to understand how to recognize one and what can be done to get you back on your feet quickly. Join this webinar to understand what a relapse is (or what it is not!), what to look for in a relapse, when to call your healthcare provider and how relapses can be treated to speed your recovery. To register visit www.mscando.org/multiple-sclerosis-programs/webinar-series/register or call 800-367-3101 x1281.
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SELF HELP GROUP LISTING FOR MORE INFORMATION CONTACT 1-800-344-4867 UNLESS OTHERWISE NOTED. CENTRAL VIRGINIA Hanover Group
Third Thursday: 1:30-3 pm
Church of the Redeemer 8275 Meadowbridge Rd. Mechanicsville, VA 23116 Leader: Dana 804-746-7481 Petersburg Day Group Second Thursday: 10-11:30 am River View-201 Epps St., Hopewell Leader: Melanie 804-526-9129 Petersburg Evening Group Third Thursday: 6-8 pm Southside Regional Hospital Third Floor Classroom Leader: Quennette 434-246-6007, 804-731-9069 Smyelin MS Support Group (Chesterfield) Third Wednesday: 12-1 pm Johnston-Willis Hospital, Cofield Conference Room inside Thomas Johns Cancer Hospital Leader: Sheila 804-739-8488 Sharon 804-794-7589 South Hill Empowerment Group Third Wednesday: 5:30-7:30 pm Community Memorial Health Center 125 Buena Vista Circle Leader: Starr 434-378-2031 Richmond Day Group Second Monday: 10:15-11:30 am Tuckahoe YMCA: 9211 Patterson Ave. Leader: Barbara 804-747-0298 Richmond Weekend Group (Formerly Richmond Evening Group) Second Saturday: 11:30 am-1 pm HealthSouth Classroom 5700 Fitzhugh Ave. Leader: Lorenzo 804-921-9712
Richmond (VA Home) For those with advanced MS Every Monday: 11 am 1101 Hampton St. Leader: Judy 804-359-4093 Tappahannock Neurological Support Second Monday: 10:30 am (Call for Location) Leader: Margaret 804-472-4781 The Invincibles Third Tuesday: 7-8:30 pm HealthSouth Fredericksburg 300 Park Hill Drive Leader: Belinda 540-373-4377
EASTERN VIRGINIA Chesapeake Group
Third Tuesday: 7 pm Lifestyle Fitness Center at Chesapeake Regional Medical Center 800 N. Battlefield Blvd., Chesapeake, VA Leader: Margie 757-633-4593 Suffolk Group Third Wednesday: 6:30 pm Magnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA Leader: Willie Ann 757-539-0139 Southside Group (Call for full list of Dates & Locations) Fourth Wednesday: 3 pm Meyera E. Oberndorf Central Library 4100 Virginia Beach Blvd., Va. Bch. Gloucester Group First Wednesday: 10:30 am Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA
African American Inspirational Group First Thursday: 11 am Hampton Public Library 936 Big Bethel Road, Hampton, VA Leader: D’Andre 757-660-3455, deejazzu44@aol.com Co-Leader: VeeGee 757-696-2540, veegee215@yahoo.com Peninsula Evening Group Second Thursday: 5:30 pm Sentara Careplex Hospital (York River Entrance, Conf. Rm. C) 3000 Coliseum Drive, Hampton, VA Leader: Diana 757-358-0284
ADDITIONAL SUPPORT OPPORTUNITIES ON THE PHONE
MSFriends: Peer Telephone Support 866-673-7436, 9 am–Midnight ET
CHAT ROOM & BOARDS MSWorld- www.msworld.org
ONLINE PEER CONNECTIONS
MSConnectionwww.msconnection.org Connect with others on a discussion forum, join an online support group, or make a one on one peer connection via email (telephone support also available if needed). My Solutions- Facebook Support Group for Young Adults in their 20s & 30s in Chapter area To sign up, visit: http://bit.ly/ MySolutionsMS or contact at Jessica 804-591-3038.
National Multiple Sclerosis Society Central & Eastern Virginia Chapter 4200 Innslake Drive Suite 301 Glen Allen, VA 23060
Like Us: MSCentralEasternVA
Find us on Twitter: @MSCentralVA
CHAPTER STAFF
Chapter President–Sherri Ellis: 804-591-3030 Vice President, Finance and Operations–Michelle Derr: 757-319-4251 Senior Manager, Accounting–Diana Oakley: 804-591-3042 Associate, Customer Service & Data–Matt Gregory: 804-591-3041 Associate, Revenue Accounting & Volunteer Engagement–Deborah Richards: 804.591.3034 Director, Programs & Services, Kathryn Zapach: 804-591-3039 Manager, Programs & Services–Jessica Ramirez: 804-591-3038 Director, Communications & Marketing–Robyn M. Hirsch: 757-319-4252 Senior Director, Development–Sharhonda Woods: 757-319-4254 Director, Development–Karla McCarraher: 757-319-4253 Manager, Development–Clare Lorio: 804-591-3037 Coordinator, Individual Giving & Leadership Events–Bobby Holt: 757-490-9627 x46207 Senior Manager, Statewide Advocacy–Ashley Kenneth: 804-591-3048
PICTURED ABOVE: MICHELLE DERR & KARLA MCCARRAHER
WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.