Winter 2014 MSConnection

WINTER 2014-2015CENTRAL & EASTERN VIRGINIA CHAPTER

MS CONNECTION NEWSLETTER

INSIDETHISISSUE

03MS AWARENESS WEEK— MARCH 2-8, 2015

06JOIN US FOR STATE ACTION DAY 2015

16UNDERSTANDING MS GENETICS RESEARCH

18SWIMMING WITH SHARKS

BIKE MSPAGE 04

WALK MSPAGE 07

02 MS CONNECTION: WINTER 2014-2015

CHAPTER NEWS

LETTER FROM THE PRESIDENTDear Friends,

A world free of multiple sclerosis—it’s not just a slogan, but the vision of the National Multiple Sclerosis Society. Our Chapter works very hard to identify needs of those affected by MS throughout Central & Eastern Virginia and to find ways to meet those needs. Oftentimes, the biggest way to fulfill the need and make the biggest impact is to connect and 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 connected with the 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 offering quality programs and services and hosting successful events. Our annual giving campaign has identified specific needs for 2015 that we need your help to support. As the demand for emergency financial assistance, college scholarships, and research dollars continues 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 Society to create a world free of multiple sclerosis.The best is yet to come,

Sherri EllisChapter President

03NATIONALMSSOCIETY.ORG | 1-800-344-4867

NATIONAL MULTIPLE SCLEROSIS SOCIETYCENTRAL & EASTERN VIRGINIA CHAPTERRichmond Office:4200 Innslake Drive, Suite 301Glen Allen, VA 23060Virginia Beach Office:760 Lynnhaven Parkway, Suite 201Virginia Beach, VA 234521-800-344-4867 • www.MSVirginia.orgChairman: Frank N. CowanChapter President: Sherri EllisDesign: 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.

CHAPTER NEWS

MS AWARENESS WEEK—MARCH 2-8, 2015Every year the National MS Society uses one week in March to host awareness activities. This coming year is no different and the chapter is looking forward to partnering with you to help create more connections, deepen engagement, and increase impact across the MS Movement!

FUN WAYS TO RAISE AWARENESS:• Plan to wear orange the entire week and share with folks why• Organize a “Wear Orange” day at your work or school and have participants make a donation• Conduct a Facebook campaign asking your friends to dedicate their status and/or profile picture • Plan on sending out “orange” emails and include an MS Awareness Week tagline• Write or visit your legislators and share how MS has touched your life• Or think of your own creative MS Awareness activity (Don’t forget to share it with us on Facebook!)

WHAT WILL YOU DO TO CONNECT, ENGAGE, INSPIRE AND RAISE AWARENESS?

Do you have great ideas to increase awareness in your community? Want to get involved? Contact Jessica Ramirez at 804-591-3038 or [email protected].

04 MS CONNECTION: WINTER 2014-201504 MS CONNECTION: SUMMER 201404 MS CONNECTION: WINTER 2014-2015

EVENTS

2015 BIG YEAR FOR BIKE MSCome be a part of Bike MS and get ready for the ride of your life. Whether it’s your first year, or your 30th, together we will raise money, have fun and make a difference in the lives of people living with MS.

BIKE MS: VIRGINIA’S OCEAN TO BAY RIDECELEBRATING ITS 35TH ANNIVERSARYDate(s): May 30-31, 2015Start/Finish Location: Cape Charles, VA Overnight Location: YMCA Camp Silver Beach (Jamesville, VA) Route Options: One or Two Days; 36, 75 and 100 each day Registration: $35 plus accommodations through 12/31/14

BIKE MS: RIDE VIRGINIACELEBRATING ITS 30TH ANNIVERSARYDate(s): June 6-7, 2015Start/Finish Location: Richmond, VA Overnight Location: DoubleTree by Hilton Hotel

(50 Kingsmill Rd., Williamsburg, VA 23185) Route Options: Two Day: 75 or 100 miles each day;

One Day: 25 or 50 miles Sunday Registration: $30 plus accommodations through 1/30/15

Each ride is fully supported with rest stops, Support and Gear (SAG) vehicles, medics, and bike support from sponsoring bike shops.

Find our fundraising

events:

REGISTER TODAY Register online at MSVirginia.org or by phone by contacting Bike MS Director, Karla McCarraher at 757-319-4253.

Participants must be 18 or older by the ride and collect $300 in donations.

05NATIONALMSSOCIETY.ORG | 1-800-344-4867 0505

CHAPTER NEWS

SCHOLARSHIP PROGRAM CLOSES ON JANUARY 15THMS shouldn’t stand in the way of an education. Th is is why the National MS Society’s scholarship program exists — to help highly qualifi ed students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. Scholarships are awarded to applicants who demonstrate fi nancial need, a strong academic record, leadership, community involvement, and how MS has impacted their lives. Awards range from $1,000–$3,000 and are awarded to applicants who will be or are attending an accredited postsecondary school and enrolled in at least six credit hours per semester in course work leading to a degree, license, or certifi cate.

Applications are accepted until January 15, 2015. Apply online at www.nationalMSsociety.org/scholarship. Note only completed online applications will be accepted.

Th e National MS Society Scholarship program is supported by funders like you! Did you know you or your company can sponsor a 2015 scholarship and help make a diff erence in a family’s life? Contact [email protected] to learn how!

AWARENESS ACTIVITIES

NORFOLK ADMIRALS MS AWARENESS NIGHT

Come out and join us on Friday, March 6, 2015 for our third annual MS Awareness Night with the Norfolk Admirals—and don’t forget to wear

orange! Advanced tickets are available online through March 6th at the reduced price of $12 by using group code kurtz12. A portion of every ticket sold through our group code will come back to the chapter, so spread the word to your family, friends, and co-workers.

For more information, contact Robyn Hirsch at 757-319-4252 or [email protected].

JOHN KURTZ, LEFT WING FOR THE NORFOLK ADMIRALS

John, whose father lives with MS, hopes to increase awareness and support for those living with MS, as well as their families, by using his athletic status and voice in the community. He has also raised the bar by offering a donation to the Chapter for every Admirals win.


ADVOCACY

JOIN US FOR STATE ACTION DAY 2015 The three Virginia Chapters of the National MS Society are hosting our annual State Action Day on Monday, January 26, 2015. MS Activists from all over the Commonwealth will travel to Richmond to meet with their state legislators and advocate for people living with MS and their families. State Action Day is an excellent way for you to voice your concerns, share your story, and impact legislation that could potentially change the lives of many people living in Virginia. If you are interested in participating in Action Day and our advocacy training on Sunday, January 25, please email Kathryn Zapach at [email protected].

For those who are unable to travel to the General Assembly Building in Richmond, we invite you to participate in our Action Day virtually from your office or home! Join the movement and be an MS Activist from wherever you are on January 26th by participating in the event online. As a virtual participant, you will receive real-time updates from those in Richmond on our Facebook page and our Twitter feed. You will be invited to spread the word about MS issues by updating your Facebook status, Tweeting, or writing a blog entry. We’ll even provide some sample status updates and blogs to get you started. You can also share your own experience with MS by e-mailing your legislators directly. If you are interested in participating in our Virtual Action Day, please e-mail Ashley Kenneth at [email protected].

JOIN US FOR VIRGINIA STATE ACTION DAY ON JANUARY 26, 2015 FROM WHEREVER YOU ARE. TOGETHER, WE CAN HELP SHAPE POLICIES TO BENEFIT PEOPLE WITH MS AND THEIR FAMILIES. RSVP TODAY!


EVENTS

BE INSPIRED. GET CONNECTED. WALK MS.

WALK MS IS A SIMPLE, BUT INCREDIBLY POWERFUL WAY FOR YOU TO SHARE IN THE HOPE FOR THE FUTURE. Spring is coming and that means faster than you can blink, warm weather, sunshine, and Walk MS will be here. We are excited for our 2015 Walk MS events and WE WANT YOU TO JOIN US!

Find our fundraising

events:

Newport News, VA: April 11, 2015 Location: Newport News Park

Virginia Beach, VA: April 12, 2015Location: Mount Trashmore

Fredericksburg, VA: April 25, 2015Location: James Monroe High School

Richmond, VA: May 2, 2015Location: Innsbrook

We are rallying team captains, walkers, volunteers and sponsors to ensure a more powerful event season! Connect with others who come together at Walk MS this spring to celebrate the progress we’ve made and to show the power of our connections.

WAYS TO GET INVOLVED: • Be at TEAM CAPTAIN• Be a WALKER• Be a FUNDRAISER• Be a SPONSOR• Be a VOLUNTEER

For information or to register, visit MSVirginia.org or contact Clare Lorio at 804.591.3037 or [email protected].


PROGRAMS

CONNECT TO THE INFORMATION YOU NEED The National MS Society telelearning series for people with multiple sclerosis and their families aims to provide information and guidance on current matters essential to living one’s best life with MS. Each free telelearning features topic-area expert(s) by phone with online presentations and Q&A session.

MS RESEARCH—YOUR QUESTIONS ANSWERED: • Tuesday, January 20, 2015: 7 pm • Thursday, January 22, 2015: 10 pm

MS AND EMPLOYMENT:Legal Basics - Know Your Rights

• Thursday, February 12, 2015: 8 pm

Managing Cognitive Symptoms and Fatigue in the Workplace:

• Thursday, February 26, 2015: 8 pm

Supports to Help You Find Employment

• Thursday, March 12, 2015: 8 pm

Guide to Flexible and Home-Based Jobs:

• Thursday, March 26, 2015: 8 pm

MANAGING MS BOWEL AND BLADDER SYMPTOMS: • Tuesday, March 17, 2015: 7 pm • Thursday, March 19, 2015: 10 pm

SEX ED FOR GROWNUPS—INTIMACY IN MS: • Tuesday, May 19, 2015: 7 pm • Thursday, May 21, 2015: 10 pm

GENDER DIFFERENCES IN MS: • Tuesday, July 21, 2015: 7 pm • Thursday, July 23, 2015: 10 pm

PREPARING FOR MS DOCTOR VISITS: • Tuesday, September 15, 2015: 7 pm • Thursday, September 17, 2015: 10 pm

Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to participate.



GIVING

YEAR-END GIFTS MAKE A DIFFERENCE As the year-end arrives and your thoughts turn toward year-end charitable giving, we hope you will remember the following about the National Multiple Sclerosis Society, Central & Eastern Virginia Chapter:

1. We consider you a member of our family. Whether you are a recent friend of the National MS Society or a longtime supporter, we value your interest and involvement. We consider you a partner with us in this great movement towards a world free of MS. You are part of our family. Together, we share a common commitment, a common mission.

2. We remain true to our mission. As you know, our commitment to people with MS is to be “a driving force of MS research, relentlessly pursuing prevention, treatment and cure.” We make our plans, build our budgets, and monitor our results committed to our mission. You can have confidence that we are staying the course.

3. We depend on your philanthropy. We rely on your financial support to help us accomplish our important mission. The more you give, the more we can do. It’s that simple. On the other hand, without you and our other supporters, we can not move toward a world free of MS.

4. We pledge financial fidelity. Like you, we wince when we hear of financial impropriety in corporations or nonprofit organizations. We affirm to you that financial integrity is a primary objective. Each contribution to the National MS Society is treated carefully and with a keen sense of stewardship. We maintain the highest standards of accountability and transparency. Our books are open, and we invite you to review our annual reports on our website, www.nationalMSsociety.org and www.MSVirginia.org.

5. We offer personalized service. Do you have appreciated stock or real estate that would make a tax-wise gift? Do you need to receive lifetime income as part of your gift to the National MS Society? The Society has a charitable gift planner to answer your questions. Please call 800-923-7727 or contact us through our website at www.nationalMSsociety.org.

For more information or to make a year end gift, please contact Bobby Holt at 757-216-1221 or [email protected].


PROGRAMS

BRINGING A LITTLE CHEER THIS HOLIDAY SEASON Although the holidays can bring joy and laughter, for families living with MS, the holidays can also bring added levels of stress and frustration. Not all families can physically go shopping for gifts nor afford to spend money outside of their monthly budget on these gifts. In order to help relieve some of the hardships the holidays bring, the Central & Eastern Virginia Chapter reached out to community partners and asked them to sponsor families in need for the holidays.

This year the Chapter delivered over $4,000 worth of donated gifts to families in our territory! The families were surprised and extremely grateful for the sponsors’ tremendous generosity. In the words of a gift recipient, “Without this program, I would not be able to get gifts for my children this Christmas. I am so thankful for this program!”

This program would not be possible without the generous support of The Cole Family, The Cowan Family, The Raimo Family, The Ramirez Family, The Schoepke Family, “Just Coffee” from Bermuda Hundred UMC, Employees from Sheltering Arms, Miles of Scarves, the Central & Eastern Virginia Staff and a grant from the Richmond Christmas Mother Fund of The Community Foundation Serving Richmond and Central Virginia, and private donors.

MSW INTERNS, GRAEME & LEAH WRAPPING GIFTS FOR OUR HOLIDAY FAMILY PROGRAM

HOLIDAY FAMILY GIFTS UNDER THE TREE

11NATIONALMSSOCIETY.ORG | 1-800-344-4867 1111

The 29th Annual Dinner of Champions was held on October 9, 2014 at The Jefferson Hotel in downtown Richmond. Anne Marie Whittemore, Partner at McGuireWoods LLP, was presented The Hope Award by the Chapter. The Award is named for Norman Cohn who was active in the fight against multiple sclerosis for 33 years, during which time he contributed his time, wisdom and personal resources unstintingly to help those with MS. Believing that volunteers are the lifeblood of the Society, Mr. Cohn established a strong network of active volunteers at local, regional and national levels. The Norman Cohn Hope Award is the most prestigious National Society volunteer award at the chapter level and is presented to someone who has maintained an exceptional leadership role in the community. They exhibit vision, extensive civic voluntary action and exemplify hope for a future free of MS.

The Dinner Committee, under the leadership of J. Alfred Broaddus, Jr., Retired President of Federal Reserve Bank of Richmond, secured sponsorships and donations totaling over $425,000 to help fund cutting edge research and provide local programs and services to those living with MS in Central & Eastern Virginia. Presenting Sponsors included: Albemarle Foundation, Bon Secours Richmond Health System, Margaret & Al Broaddus, Dominion, The Gray Family Foundation, McGuireWoods LLP, T. Rowe Price, and The Whittemore Family.

EVENTS

CHAPTER HONORS ANNE MARE WHITTEMORE AT DINNER OF CHAMPIONS

(L-R) CHAPTER PRESIDENT, SHERRI ELLIS; HONOREE, ANNE MARE WHITTEMORE; SOCIETY PRESIDENT & CEO, CINDI ZAGIEBOYLO; AND BOARD CHAIR FRANK COWAN

DINNER CHAIR-J. ALFRED BROADDUS, JR

12 MS CONNECTION: WINTER 2014-201512 MS CONNECTION: WINTER 2014-2015

It’s my anniversary—my MS anniversary. Yep, multiple sclerosis and I have been together 18 years now. We began with a short courtship. A few twinges of weakness here and there. Some numbness. But just enough to raise my family doctor’s suspicions. An MRI later confirmed a diagnosis of MS.

It was September of 1996 when we finally exchanged our vows.

I, Doug, take you MS, to be my chronic disease.

To have and to hold(Are they referring to the MS Hug?)

From this day forward.For better or for worse

(I’m hoping for the better.)For richer or for poorer.

In sickness and in health, until death do us part.

We didn’t have much of a honeymoon because soon after our ceremony I was hooked up to a steroid IV. (I guess that was part of the “in sickness and in health!”) Like most relationships, through the years we have had our share of ups and downs, highs and lows, stumbles and falls (mostly by me).

Since separation or divorce wasn’t an option, we did the counseling and support group thing, only to realize we really didn’t like each other. I

wasn’t fond of MS and likewise, MS didn’t think much of me.

It took several years before we came to a mutual compromise. MS would do its thing and I would do mine. When MS would zig, I would zag. When MS threatened my ability to drive, I got hand controls for the car. When it challenged my balance, I would use grab bars, canes and a rollator. And when MS swipes my powers to walk, I use a wheelchair.

My point being, whatever your MS throws at you, you can return the favor with something bigger and better. You can exercise to improve your symptoms of fatigue. You can stretch to lessen the spasms of spasticity. And you can take part in activities you enjoy to combat the negative doldrums of MS.

DOUG ANKERMAN

LIVING WITH MS

HAPPY MS ANNIVERSARY TO MEBY DOUG ANKERMAN, MS AMBASSADOR


ADVERTISING OPPORTUNITIESHelp the Chapter share important information about research, programs, services and events by advertising in 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 [email protected] to learn more.


Personally, I enjoy writing about MS. I make fun of it, to its face, on my MS humor-inspired blog, My Odd Sock. Writing about MS helps me cope with the everyday challenges and frustrations that people with MS face. Making light of MS makes me feel that I am bigger than the disease.

I hope the readers of My Odd Sock feel the same way. As a person with MS who is way wiser than I once commented, “It is better to live and laugh than cry and die.” Well stated. Living by that standard could be the reason why MS and I have been able to put up with one another for 18 years.

As I “celebrate” the anniversary of my illness with much sarcasm, my true feelings are filled with hope and positive energy for a long future with MS. May you who live with MS feel much the same.

Find Doug Ankerman’s blog at www.myoddsock.com or follow him on Twitter @myoddsock.

Originally published in the Ohio Buckeye MS Connection newsletter.

SYMPTON MANAGEMENTReach out to the National MS Society to explore resources and information on symptoms such as falling, fatigue, mobility issues, cognitive changes and more. Call 1-800-344-4867 or visit www.nationalMSsociety.org.

CONNECT WITH OTHERSTo connect to other people whose experiences of living with MS may be similar to yours, visit www.MSconnection.org.

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.


For Brian Thompson, symptoms of multiple sclerosis were something he ignored as long as he could. Between 2007 and 2009, he experienced two cases of optic neuritis, an inflammation that can cause a complete or partial loss of vision. However, after treatment, he regained his vision completely. “So, I went far too long before getting a diagnosis,” the Burbank, Calif., resident says.

Thompson’s symptoms slowly progressed over the next three years, and he started experiencing issues with balance, endurance, strength and heat intolerance. “I was at a point where I could no longer disregard these symptoms,” he remembers. Shortly thereafter, he was diagnosed with MS.

“What do I do now?” and “How will my life change?” are just a couple of the questions Thompson had after he received the news. However, at the MS Comprehensive Care Center at the Keck School of Medicine of University of Southern California, Thompson connected with an MS-certified care manager. “She has been an amazing resource,” he says. “She has helped me with everything from filling out paperwork to making sure I ask my neurologist the right questions.”

When Thompson broke his leg after a fall and required in-patient care, the care manager connected him to a local rehabilitation facility and set him up with 72 hours of support for his recovery time at home. The extra support was a relief for Thompson and his girlfriend, Shelli. “Having the help took the

BRIAN THOMPSON, DIAGNOSED WITH MS IN 2012

LIVING WITH MS

REACH OUT FOR HELP

MS NAVIGATOR PROGRAM The MS Navigator program can connect people like Brian Thompson to the information, resources and support they need, as well as help identify solutions. Call 1-800-344-4867 to get connected with an MS Navigator.

burden off us. Sometimes MS becomes the third person in the room. It’s nice to not have to focus on it,” he says.

Originally published in the Southern California & Nevada MS Connection newsletter.


One of the most challenging things about multiple sclerosis is its unpredictability. Although we’ve witnessed marvelous medical breakthroughs, none of us knows the course our disease will follow. For those of us who require assistive technology (such as specialized wheelchairs and scooters), major improvements in these devices now allow us to live much more independently. Plus, these devices are covered by Medicare. But then what happens when we want to go outside? Incredible as it sounds, Medicare will not cover the use of this assistive equipment when we leave our homes to work, visit friends or shop.

That’s because Medicare is currently hamstrung by a 40-year-old policy known as the “in-the-home” restriction. The Medicare benefit was originally intended to cover devices used outside of a hospital or institution; since then, it’s been interpreted so that Medicare will only reimburse for devices needed for in-home use. The real-world impact of this policy is that Medicare will not pay for mobility devices that people use to remain active members of their communities outside the confines of their homes. Since many of us who live with MS depend on Medicare, this issue has become very personal indeed.

Last March at the National MS Society’s Public Policy Conference, MS activists advocated for a federal bill that would improve access

to individually configured manual and power wheelchairs, adaptive seating systems and alternative positioning systems, and other specialized equipment—otherwise known as complex rehabilitation technology or CRT. The Ensuring Access to Quality Complex Rehabilitation Technology Act would also change the antiquated interpretation of the Medicare law for CRT products and allow Medicare to reimburse for CRT products used outside of the home. Under this act, CRT suppliers would also be required to be accredited by an independent organization and have qualified staff to service and repair beneficiaries’ CRT products.

Not surprisingly, this bill has bipartisan support in the House and Senate. With so many unanswered questions surrounding the more progressive forms of MS, it’s nice to come across an improvement that is so stunningly simple.

Helen Marie Russon is a National MS Society volunteer and an attorney who teaches disability law and investigates discrimination claims in Oregon.

Originally published at www.defeatmsblog.com.

ADVOCACY

A SIMPLE CHANGEBY HELEN MARIE RUSSON

TAKE ACTION on issues important to people affected by MS. Sign up at www.nationalMSsociety.org/advocacy or call 1-800-344-4867.


People affected by multiple sclerosis sometimes ask me: “It’s great that they found another gene that is linked to MS, but what does it mean for me?” Well, the genetics research presented at the annual meeting of the Americas and European Committees for Treatment and Research in MS (ACTRIMS-ECTRIMS), held in Boston this past September, has given me great answers.

HOW GENES INTERACTDr. David Hafler (Yale University) launched the discussion about genes and MS when he delivered the keynote lecture during the opening ceremony. He was the founder, with other researchers, of the International MS Genetics Consortium, a team that has turned MS genetics on its ear. “Virtually every MS geneticist on earth is working together,” he declared and spoke eloquently about where we are in the search for MS genes. He noted that there will likely be hundreds of MS risk genes uncovered eventually. “Each [gene] by itself has a small effect on disease risk; but each interacts with the environment,” he noted. “These are not bad genes, and it’s not a bad environment – it’s a bad interaction.”

MAPPING MS SUSCEPTIBILITYDr. Philip De Jager (Harvard), recipient of the 2014 Barancik Prize for Innovation in Research, presented the Consortium’s latest findings – a replication of its pivotal genetics study, published in Nature Genetics (online, September 29, 2013), that identified 48 new genetic variants associated with MS based on data gathered from 30,000 people with MS and more than 50,000 controls without MS. Gene research is grueling – data from thousands of people with and without MS need to be gathered in massive numbers, and then all those data must be replicated.

RESEARCH

UNDERSTANDING MS GENETICS RESEARCHBY CLAUDE SCHOFIELD, PHD


Dr. De Jager announced that after studies involving over 80,000 people, they now have identified more than 159 genetic variations related to MS, and more importantly, have begun to identify the specific immune cells and proteins involved, and how much weight each one carries. “We have created a reference map of MS susceptibility,” said Dr. De Jager. “Now we turn to the task of understanding the biology of MS susceptibility.”

EXPLORING DIFFERENCESDr. Noriko Isobe (University of California, San Francisco) and the Consortium reported on how genes differ between African Americans and Caucasians with MS, following up on a 2013 study published in Neurology (online, June 14, 2013). Eight novel genes were identified among African Americans with MS that were not uncovered in the larger gene scans. We’ve seen that the experience of African Americans with MS is different from that of Caucasians, and this study is putting us on the road to finding out why.

GENES AND VITAMIN DDr. Jennifer Graves (University of California, San Francisco) and the Network of Pediatric MS Centers reported on findings from an ongoing study led by investigators nationwide of what triggers MS in children. They showed that vitamin D status, which has been linked to MS risk, was associated with MS relapses only if children have a specific immune gene. The original study included 185 kids, and this group is collecting data on hundreds more. Trials of vitamin D supplementation are ongoing, so

I’m hopeful that future findings will show who may be helped most by this strategy.

TRANSLATING THE DATATaking a big step toward translating all of this gene data, Dr. Nikolaos Patsopoulos (Brigham and Women’s Hospital) and colleagues from a range of institutions in Boston examined which proteins interact with the 159 genes that have been pinpointed by the Consortium. Then they cross-linked this information with the “druggable genome” —a data set on how existing therapeutics interact with the genome—and identified more than 2,000 possible therapeutic interactions.

Genetics research is a huge part of our efforts to end MS forever because by understanding factors that may cause MS, we’re better able to target research of solutions to those specific factors. This meeting has given me a lot of hope that we are on the right path to doing just that.

Dr. Claude Schofi eld is the director of Discovery Research at the National MS Society.

Originally published on www.MSconnection.org/blog.

To follow the latest MS research, visit www.nationalMSsociety.org/research, or sign up for MS eNEWS atwww.nationalMSsociety.org/signup.


Thousands of people across the United States are using their creativity and talents to forge unique Do It Yourself (DIY) fundraising events that raise awareness and critical funds in support of life-changing programs for people with MS and cutting-edge research. Last summer, devoted husband Keith Padien joined them.

“My wife Christina was diagnosed with MS shortly after our honeymoon in November of 2008,” Padien, 37, explains. “We got involved with the Society after that, and participated in Challenge Walk MS in 2009 and 2011. However, this year I wanted to splash things up a bit.”

An avid swimmer, it was an easy decision to combine swimming with his passion for MS advocacy. So in June 2014, Padien raced against 228 participants in Sharkfest, a 1.6-mile swim under the Golden Gate Bridge in San Francisco, to raise more than $32,000 for the MS movement.

A FEW FUNDRAISING SECRETSPadien shares a few insider secrets for anyone who is interested in hosting their own DIY event:

• Fundraising is a “contact sport.” The more contacts you make, the more likely you are to raise money. Email everyone you know.

• Send email(s) when people are more likely to be in front of their computers. Monday mornings seemed to work best for Padien.

• Thank everyone (non-donors included) with a follow-up email. Include your fundraising results and pictures of the event.

Padien encourages anyone who wants to raise money or awareness for MS to find a personalized way to get involved. “If walking or biking for MS doesn’t get your heart pumping, join us DIY folks and create your own event!” he says. “Your enthusiasm will be infectious, and I find people always seem happy to give to a good cause.”

Megan O’Neal is a supporter of the National MS Society and has participated in the Challenge Walk MS for many years.

Originally published in the Pacific South Coast MSConnection newsletter.

WAYS TO GIVE

SWIMMING WITH SHARKSBY MEGAN O’NEAL

PADIEN IN FRONT OF THE GOLDEN GATE BRIDGE

1919

MEMORIAL & TRIBUTESThe Central & Eastern Virginia Chapter would like to sincerely thank the generous contributors who made memorial and tribute gifts from August through November 2014. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.

MEMORIAL GIFTSWilbur James BaggsBernard JamisonJim BoggsMary EleyChristine M. (Northrup) BrickleyMichael BrickleyTharver ButlerLaura MathisPeninsula WorklinkBetty ChandlerEric BartschEwen HillCheryl CastleberryDonald EdwardsJulius R JonesLeslie BowlingEugene Bryl McCarthy Jr.Frances BarryMary DillardElizabeth KatonaCatherine McCarthyDorothy MundySarah Mundy

Richard Gordon MeyerMaro ZachosMary F NelsonPatricia WhitmoreWatson R. RisherLarry WashingtonMandy SchmidtDennis AllisonMary Ann SchmidtLawrence GrabGregory H WalkerJacqueline JuddCarolyn Ware

IF YOU WOULD LIKE TO MAKE A MEMORIAL OR TRIBUTE GIFT, PLEASE CONTACT THE CHAPTER AT 804-353-5008 OR VISIT MSVIRGINIA.ORG.


WAYS TO GIVE

LOCAL DIY EVENTSSPECIAL THANKS TO THOSE WHO ORGANIZED RECENT DIY FUNDRAISERS:I Barre for Heart!

In October, Richmond Barre raised over $1,300 through their “I Barre for Heart” event.

Finish MS- Caitlin Kear

In November, Caitlin Kear raised over $2,400 running a half Marathon, surpassing her $1,300 goal.

Interested in doing a DIY event to benefi t the Chapter? We provide a DIY webpage fi lled with lots of tips and tools.

For more information, visit MSVirginia.org or contact Debbie Cole at 804-591-3043 or [email protected].


CHAPTER NEWS

2014 CHAPTER AWARD RECIPIENTS VOLUNTEERS OF THE YEARPAM LOWERY Pam Lowery started volunteering with the chapter in 1992 when her husband, Bruce, was diagnosed with MS. Soon afterward, Pam started serving on the Walk MS: Fredericksburg Planning Committee. Then in 1993, the couple started their own Bike MS team--Team Bruce. In 1995, Pam stepped up as Chair of the Walk MS: Fredericksburg Planning Committee and continues to lead the charge. Pam does not stop there though; she attends legislative action days and speaks at workshops for team captains. She has also volunteered her time by attending the National MS Leadership Conference and serving as a self-help group leader. Pam’s compassionate heart and fighting spirit shows through her expansive volunteer work and the over $200,000 she and Bruce have raised through Walk MS and Bike MS.

VIRGINIA TOURING SOCIETY (VTS)We are pleased to also honor a very special group of people–the Virginia Touring Society or VTS. These motorcyclists monitor the Bike MS: Virginia’s Ocean to Bay Ride route all weekend long. As our Road Marshalls they ensure the cyclists stay on the route and are safe, as well as that the route is clear of debris and safety concerns. This dedicated group has been involved for over 20 years. Year after year, they recruit 10 to 15 members to volunteer. Some of the faces have changed over the years, but the commitment has remained. In recent years, the group has been headed up by two great ladies, Mary Ahrens and Mickey Giles. They have been serving on our local Bike MS Committee for the past 3 years and have been

more than willing to help out in the office as well. Before Bike MS, there is always a need for some additional help with mailings and phone calls and these ladies recruit friends and jump right in. And after the Bike weekend, there is always so much to do to get the office back in order and they are right there to help us with that as well.

CORPORATE SERVICE AWARDSEach year the Corporate Service Award is presented to an organization or company who demonstrates a commitment to helping those with MS in our community by providing a noteworthy amount of time, energy, professional resources, volunteer work, and/or a financial contribution.

THE PAGE AUTO GROUP In 2008, The Page Auto Group came on as Presenting Sponsor for Bike MS: Ride Virginia. The next year, they took their involvement to the next level and provided an in kind donation of eight support and gear vehicles for Bike MS weekend. Owner, Larry Page, has continued to match this support of Bike MS: Ride Virginia each year. Since 2002, The Page Auto Group and Larry Page have given a combined total of $132,500 to support MS research and Chapter activities, as well as over $14,000 of in-kind support. Larry has a tenacious drive to help and we can always depend on him.

CLARK NEXSENIn 2008, the architecture and engineering firm Clark Nexsen established the Clark Nexsen Foundation to help promote community support. In 2009, they started financially supporting the Sprocket Protectors Bike MS


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team led by employee Joe Bushey. In 2010 they started branching into additional Chapter events such as the Moscow Ballet, Vienna Boys Choir, the Women on the Move Luncheon and Bike MS Rest Stop Sponsorship. Joe has truly been the catalyst for Clark Nexsen’s close involvement and for their years of support as MS hits close to home for Joe. And guess what, Joe’s team is not only made up of family, it is also made up of his co-workers from Clark Nexsen who support the Society’s mission. In total, the team has raised over an amazing $169,000 and Clark Nexsen has donated close to $40,000 to the Chapter.

COMMITTEE MEMBERS OF THE YEARBARB COWAN In 2011, Barb Cowan became involved by serving on the Planning Committee for the Women on the Move Luncheon. For the past three years, she has chaired the Committee and made drastic changes to increase its revenue. She played a crucial role in developing the Women on the Year and Women to Watch nomination process, helped increase the number of attendees to 250 this year, and rallied the Committee to create a remarkable Women on the Move Luncheon. She has been a tremendous asset to the event and her vision for greatness has taken the event from $60,000 to $90,000—a 50% increase. She also has served as a great Mistress of Ceremonies the past two years.

JAY TALMANJay Talman has participated in 31 Bike MS: Virginia’s Ocean to Bay Ride events and volunteered as part of a Bike MS Planning Committee for over 25 years. But wait there is more … through Jay’s connection, we have the truck that carries all of the cyclist’s luggage from the Start to the Finish donated every year. And last year, he stepped into the role of Chair of the Bike MS Committee. In this role, he has brought a wealth of knowledge and history about our ride. He is always motivated to make

the ride better and puts in the extra hours to work expos and other rides in search of more participants and new ideas. He keeps the Society’s vision and mission in the forefront of his mind as he serves as the Committee Chair and as part of our Bike MS Task Force.

BOARD MEMBERS OF THE YEARALEX SLAUGHTER Alex Slaughter has been a member of the Chapter’s Board of Trustees for 22 years. He is past Chair of the Board and has chaired the Governance Committee since 2007. A McGuire Woods Emeritus, he conscientiously worked to re-write the National MS Society By-laws. Alex also handled the dissolution of the Central Virginia Chapter’s independent charter last year. Alex is very philanthropic and since 1998 has personally given over $97,000. A few words that come to mind when you think of Alex are service, dependable, faithful, character, and strength.

RICHARD BROCKRichard Brock joined the Chapter’s Board of Trustees in 2014 and truly honored his commitment to do something about MS now with exuberance. Richard is the Director of Facilities Operations at Sentara Leigh Hospital and when he decided to form a Bike MS team for this year, he recruited his co-workers and reached out to his contacts at work. His team, #Leigh Proud, raised over $8,000 in its first year! Richard was also able to bring on two new Rest Stop Sponsors. He did not stop there though. Sentara sponsored a table at our inaugural Women on the Move Luncheon in Virginia Beach in June and then he decided to volunteer on his motorcycle as a Road Marshall at our Bike MS in September. Richard was everywhere in 2014.

Th e Chapter truly appreciates all of our dedicated volunteers. For information on how you can help, please contact Deborah Richards at 804-591-3034 or [email protected].


COMMUNITY CALENDAR PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MULTIPLE SCLEROSIS SOCIETY.

MULTIPLE SCLEROSIS EDUCATIONAL GROUPThe 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 pmNeurosciences Conference RoomRiverside Medical Office Building12200 Warwick Blvd., Newport News, VA 23601

Th e group is off ered by Riverside Center for Neurosciences and meets on an ongoing basis. For information call 757-875-7880.

CAN DO MULTIPLE SCLEROSIS WEBINARSJoin 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. January 13, 2015: 8:00 – 9:15 p.m.: Get Motivated to Get OrganizedLife can be pretty complicated these days, and it is diffi cult to keep track of our appointments, email, family life, relationships and fi nances. One way to overcome the eff ects of MS fatigue is to incorporate organizational skills and strategies into your day to day life. We could all benefi t from being more organized, but it is diffi cult to get started.February 10, 2015: 8:00 – 9:15 p.m.: Flying Solor with Multiple SclerosisMost people are faced with changes, losses and the need to make adjustments during their lives, but individuals with MS seem to have more than their fair share of these experiences. And, if you are living alone with MS, these changes can be even more challenging. Join this webinar as they discuss the strategies in the decisions you can make to maintain independence while functioning at the highest possible level, both physically and emotionally.

To register visit www.mscando.org/multiple-sclerosis-programs/webinar-series/register or call 800-367-3101 x1281.


SELF HELP GROUP LISTINGFOR MORE INFORMATION CONTACT 1-800-344-4867 UNLESS OTHERWISE NOTED.

CENTRAL VIRGINIAHanover GroupThird Thursday: 1:30-3 pmChurch of the Redeemer8275 Meadowbridge Rd.Mechanicsville, VA 23116Leader: Dana 804-746-7481

Petersburg Day GroupSecond Thursday: 10-11:30 amRiver View-201 Epps St., HopewellLeader: Melanie 804-526-9129

Petersburg Evening GroupThird Thursday: 6-8 pmSouthside Regional HospitalThird Floor ClassroomLeader: Quennette 434-246-6007, 804-731-9069

Smyelin MS Support Group (Chesterfield)Third Wednesday: 12-1 pmJohnston-Willis Hospital, Cofield Conference Room inside Thomas Johns Cancer HospitalLeader: Sheila 804-739-8488Sharon 804-794-7589

South Hill Empowerment GroupThird Wednesday: 5:30-7:30 pmCommunity Memorial Health Center125 Buena Vista CircleLeader: Starr 434-378-2031

Richmond Day GroupSecond Monday: 10:15-11:30 amTuckahoe YMCA 9211 Patterson Ave.Leader: Darlene 804-346-2040

Richmond Weekend GroupSecond Saturday: 11:30 am-1 pmHealthSouth Classroom5700 Fitzhugh Ave.Leader: Lorenzo 804-921-9712

Richmond (VA Home)For those with advanced MSEvery Monday: 11 am1101 Hampton St.Leader: Judi 804-359-4093

Tappahannock Neurological SupportSecond Monday: 10:30 amBeale Baptist ChurchLeader: Sharon 804-580-7315 Joan 804-443-9226

The InvinciblesThird Tuesday: 7-8:30 pmHealthSouth Fredericksburg300 Park Hill DriveLeader: Belinda 540-373-4377

EASTERN VIRGINIAChesapeake Group Third Tuesday: 7 pmLifestyle Fitness Center at Chesapeake Regional Medical Center800 N. Battlefield Blvd., Chesapeake, VALeader: Margie 757-482-3247

Suffolk GroupThird Wednesday: 6:30-8 pmMagnolia United Methodist Church1764 Wilroy Road, Suffolk, VALeader: Willie Ann 757-539-0139

Southside Group (Call for full list of Dates & Locations)Fourth Wednesday: 3 – 4:30 pmMeyera E. Oberndorf Central Library4100 Virginia Beach Blvd., Va. Bch.Leader: Peter (757) 671-1971

Gloucester GroupFirst Wednesday: 10:30 am-12:30 pmRiverside Wellness and Fitness Center7516 Hospital Drive, Gloucester, VALeader: Tom (804) 694-5696Barbara (804) 695-9950

ADDITIONAL SUPPORT OPPORTUNITIESON THE PHONEMSFriends: Peer Telephone Support866-673-7436, 9 am–Midnight ET

CHAT ROOM & BOARDSMSWorld- www.MSworld.org

ONLINE PEER CONNECTIONSMSConnection- www.MSconnection.orgConnect 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 areaTo sign up, visit: http://bit.ly/MySolutionsMS or contact at Jessica 804-591-3038.

African American Inspirational GroupFirst Thursday: 11 amHampton Public Library936 Big Bethel Road, Hampton, VALeader: D’Andre (757) 660-3455 VeeGee (757) 696-2540

Peninsula Evening Group Second Thursday: 5:30 pmSentara Careplex Hospital (York River Entrance, Conf. Rm. C)3000 Coliseum Drive, Hampton, VALeader: Kendrick (757) 408-9751Diana (757) 358-0284

NationalMultiple SclerosisSocietyCentral & Eastern Virginia Chapter

4200 Innslake DriveSuite 301Glen Allen, VA 23060

CHAPTER STAFFChapter President–Sherri Ellis: 804-591-3030Vice President, Finance and Operations–Michelle Derr: 757-319-4251Manager, Accounting–Eric KellyAssociate, Customer Service & Data–Matt Gregory: 804-591-3041Associate, Revenue Accounting & Volunteer Engagement–

Deborah Richards: 804.591.3034Director, Programs & Services, Kathryn Zapach: 804-591-3039Manager, Programs & Services–Jessica Ramirez: 804-591-3038Specialist, Services–Jamie Peed: 757-490-1335Director, Communications & Marketing–Robyn M. Hirsch: 757-319-4252Senior Director, Development–Sharhonda Woods: 757-319-4254Director, Development–Karla McCarraher: 757-319-4253Manager, Development–Clare Lorio: 804-591-3037Manager, Logistics–Otis DowdyCoordinator, Individual Giving & Leadership Events–

Bobby Holt: 757-216-1221Assistant, Development–Debbie Cole: 804-591-3043Senior Manager, Statewide Advocacy–Ashley Kenneth: 804-591-3048

WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.

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Winter 2014 MSConnection