Summer 2015 MS Connection

SUMMER 2015 VIRGINIA - WEST VIRGINIA CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

05DINNER OF CHAMPIONS HARRISONBURG

09CONNECT TO THE INFORMATION YOU NEED

15WEEKEND ESCAPE: THE BRIAN MASON RESPITE CAMP

24THE POWER OF CONNECTION

HAVE A VOICE IN MS RESEARCH PAGE 17

BIKE MSPAGE 08

02 MS CONNECTION: SUMMER 2015

CHAPTER NEWS

LETTER FROM THE PRESIDENTDear Friends,

“One is not born in the world to do everything but to do something.” When I think about these words by poet, writer, and philosopher Henry David Thoreau I think of our vision to create a world free of MS.

Inside this MS Connection issue, you will read about incredible volunteers that have impacted our Chapter. Without our volunteers’ tireless dedication, we would not be able to accomplish all that we do. Our Walk and Bike events were successful because of those who offered their time to set fundraising goals, cheer people on, and commit to truly making a difference.

Volunteers help with our vision in a variety of ways and on a variety of levels. I would like to invite you to think about how you might be able to connect with us as a volunteer. The possibilities are endless, as will be your reward.

Decide today what your “something” will be.

Warm Regards,

Sherri EllisChapter President

WALK MS BIKE MS

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

NATIONAL MULTIPLE SCLEROSIS SOCIETYVIRGINIA - WEST VIRGINIA CHAPTERMain Office:4200 Innslake DriveSuite 301 Glen Allen, VA 23060

1-800-344-4867MSVirginia.org • MSWestVirginia.org

Chairman: Gregory BishopChapter President: Sherri EllisDesign: Robyn M. Hirsch

© 2015 National Multiple Sclerosis Society, Virginia - West 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.

GET INVOLVED

BECOME A MOVEMENT AMBASSADOREducating and engaging thousands of people in the movement to end MS is a big job and the National MS Society, Virginia - West Virginia Chapter can’t do it alone. That’s why we are recruiting volunteers for our Movement Ambassador Program.

HOW DO MOVEMENT AMBASSADORS HELP?The primary role of Movement Ambassadors is to engage others. Movement Ambassadors support the Chapter in a wide range of awareness activities from simply talking to someone about their 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.

If you are interested in becoming a Movement Ambassador or would like more information, please call or email Deborah Richards at 804-591-3034 or [email protected]. Interested volunteers will be trained to be spokespersons representing the National Multiple Sclerosis Society, Virginia - West Virginia Chapter and will be provided with all needed guidelines and materials.



GUEST SPEAKER: BOBBI DOORENBOS, FIRST WOMEN F-16 FIGHTER PILOT IN THE USABobbi Doorenbos was diagnosed with MS in 2004, but she doesn’t let that stop her! She serves as a Colonel in the Air National Guard and is amongst the first female F-16 pilots in the U.S. She served in Operations IRAQI FREEDOM AND SOUTHERN WATCH, scrambled on September 11, 2001 to provide Presidential protection, and performed combat air patrol over the nation’s capital. She was nationally recognized by the Federally Employed Women’s organization with their 2006 Meritorious Service Award. She has worked as a White House fellow under President George W. Bush and most recently, special advisor to Vice President Joe Biden for Defense Policy and Intelligence Programs. She has served her community extensively as a volunteer and board member for the Assault Care Center Extending Shelter and Support, as a member of the Red Cross’ Disaster Response and Emergency Services teams, and as a mentor and tutor.

EVENTS

WOMEN ON THE MOVE LUNCHEONThe Women on the Move Luncheon is a networking event that educates, motivates and inspires attendees to raise awareness and funding to support the fight against multiple sclerosis. The event features a celebrity speaker who has a personal connection to MS. Attended by both men and women, the event also recognizes an outstanding woman who has done something extraordinary within her community as the Woman on the Move.

VIRGINIA BEACH • THURSDAY, JUNE 25THFounder’s Inn & Spa

Doors open at 11:00 amLunch & guest speaker begin at 12:00 pmMistress of Ceremonies: Katie Collett, News Anchor with WAVY-TV

RICHMOND • TUESDAY, JUNE 23RDOmni Richmond Hotel

Doors open at 11:00 amLunch & guest speaker begin at 12:00 pmHonoree: Janet Matsey Phillips, PGA, LPGA Member

If you would like more information on our Women on the Move Luncheons, please contact Angie Miller at 434-465-6036 or [email protected].


EVENTS

DINNER OF CHAMPIONSHONORING PETER S. YATES WITH THE MS SILVER HOPE AWARD

On May 27, the 21st Annual Harrisonburg Dinner of Champions was held at the JMU Festival Conference Center. The Chapter was pleased to present Peter S. Yates, Editor and General Manager for the Daily News-Record and President of Page Shenandoah Newspaper Corporation, with the MS Silver Hope Award. The Silver 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. Congratulations Peter S. Yates and thank you for helping the Dinner of Champions raise over $122,000 to support crucial research and local programs and services for those living with MS!

Peter S. Yates has served as Editor and General Manager of the Daily News-Record since 2000. He is also the President of Page-Shenandoah Newspaper Corporation, which owns and operates newspapers in Luray and Woodstock and manages a newspaper in Front Royal.Yates is a native of Richmond, VA and a graduate of Woodberry Forest School and UVA.He began his professional career with The Daily Progress, Charlottesville, VA in 1985 and became publisher of The Herald-Tribune, Batesville, IN in 1987 at the age of 22.Yates published several newspapers in Virginia from 1988-1999 including weeklies in Orange, Madison, and Greene and dailies in Danville, Woodbridge, Manassas, and Culpeper. Yates currently serves as a board member of The Community Foundation of Harrisonburg-Rockingham, the Harrisonburg-Rockingham

Free Clinic, the Harrisonburg Education Foundation, the Rockingham Educational Foundation, and The Salvation Army of Harrisonburg. He is an advisory board member for the Boys and Girls Clubs of Harrisonburg and the Arts Council of the Valley.He is a past president or chairman of the Harrisonburg-Rockingham Chamber of Commerce, the Rockingham Memorial Hospital Foundation, the Arts Council of the Valley, the Virginia Press Association, the Harrisonburg Education Foundation, and the Harrisonburg Electric Commission.He has also served as campaign chair and board member for the United Way of Harrisonburg and Rockingham County and as a board member for the Blue Ridge Community College Educational Foundation. He has been a member of the Harrisonburg Rotary Club since 2000.

55

(L-R) DINNER CHAIR, KAREN WIGGINTON; AWARD RECIPIENT, PETER S. YATES; CHAPTER PRESIDENT, SHERRI ELLIS


Every year hundreds of MS Activists and Society staff from across the country travel to Washington, DC to attend the Society’s annual Public Policy Conference (PPC). This year, the conference took place over three days in March with two days of educational programing and one day on Capitol Hill. We had eleven dedicated volunteer activists from the Virginia - West Virginia Chapter join our advocacy staff at PPC. MS activists heard from experts on how to tell their stories to win the hearts, minds, and votes of lawmakers and they also learned about the political climate in Washington. Four federal advocacy priorities were discussed and activists took to Capitol Hill on March 11th to spread our message. Collectively, the Society held nearly 400 meetings with members of Congress and their staff, including 12 with Virginia representatives and four with West Virginia legislators!

Our MS activists asked members to cosponsor and pass the Advancing Research for Neurological Diseases Act of 2015 (H.R 292/ S849). The bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases, including multiple sclerosis. By capturing and compiling this data, we will be able to identify pockets of prevalence, demographic data and target funding to these areas for further research and analysis. This new data system could one day lead to a cure for

diseases like MS by identifying factors related to environment, medical practices, and lifestyle variances to name a few. They also asked members to cosponsor and pass the Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act (H.R 1516/ S1013). This bill creates a separate benefit category under Medicare for CRT, protecting and improving access to these customized products so that people can remain independent and be active members of their communities. It also removes the “in-home” restriction so that products used outside the walls of one’s home will be covered by Medicare.

In addition for asking support on these two pieces of legislation, MS activists also asked their representatives for additional funding for MS research. We asked Congress to fund the National Institutes of Health (NIH) at $32 billion in fiscal year (FY) 2016. Over the years,

ADVOCACY

PUBLIC POLICY CONFERENCE

(L-R) MARQUES JONES, DAVE SAUNDERS, SHERRI ELLIS, ASHLEY KENNETH, KEN SHAFER

07NATIONALMSSOCIETY.ORG | 1-800-344-4867 0707

GET INVOLVED

VOLUNTEER WITH THE CHAPTERVolunteers are integral partners in our mission to serve the over 12,000 individuals living with MS, as well as their friends and family, throughout Virginia and West Virginia. Volunteers contribute valuable resources—time, knowledge, skills, and leadership—that infuse the organization with energy and passion.

VOLUNTEER POSITIONS AVAILABLE:• Office support

(Administrative Tasks, Data Entry)• Event planning• Online research• Partnership building• Phone calls

Individuals of all backgrounds are welcome.

For more information or to volunteer, please contact Deborah Richards at 804-591-3034 or [email protected].

research at the NIH has led to advancements in MS detection and treatment, but funding for MS research has seen significant decline. We also asked Congress to fund the Congressionally Directed Medical Research Program (CDRMP) at $10 million in FY 2016. The CDMRP funds high risk/high reward studies that increase knowledge about the cause of MS, improve assessment of the disease and will lead to expanded treatment options.

We made great impact on the Hill! We gained dozens of cosponsors on the Advancing Researching for Neurological Disease Act of 2015 including four members from Virginia and we’ve secured lead sponsors of the Senate version of the bill. In addition, we gained numerous supporters for the Ensuring Access to Quality Complex Rehabilitation Technology Act including Senator Capito from West Virginia. We had a record high number of members of Congress show their support for the CDRMP by signing the Dear Colleague letter and submitting programmatic funding requests.

Overall, the 2015 Public Policy Conference was a tremendous experience but there is still work that needs to be done! We are continuing to advocate for policies and programs that benefit people with MS and their families.

If you interested in learning more about our legislative priorities or how you can become involved as an MS Activist, please contact Ashley Kenneth at [email protected].

08 MS CONNECTION: SUMMER 201508 MS CONNECTION: SUMMER 201408 MS CONNECTION: SUMMER 2015

EVENTS

END YOUR SUMMER WITH BIKE MS Before you blink, summer will be coming to an end. Don’t slip into Fall without participating in or volunteering for our last Bike MS event in 2015—Bike MS: Country Roads Ride.

BIKE MS: COUNTRY ROADS RIDE PRESENTED BY MYLAN

Date(s): August 29-30, 2015

About the Ride: Enjoy the scenic roads of the Greenbrier and Pocahontas counties of West Virginia as you pedal along with other cyclists riding to create a world free of MS! Road cyclists will take in some of West Virginia’s most beautiful territory sneaking a peak at Senator Rockefeller’s countryside home and riding through Greenbank Observatory. Likewise, trail cyclists will enjoy the beautiful Greenbrier River Trail--a packed, crusher surface with a mere one percent grade.

This fun and safe ride is fully supported with rest stops every 10-15 miles, Support and Gear (SAG) vehicles, medics, and bike mechanics.

Start/Finish Location: Road Route-The GreenbrierTrail Trek-The Greenbrier Youth Camp

Overnight Location: Snowshoe Mountain Resort

Route Options: Two Day Road Route: 60 or 75 miles each day Two Day Trail Trek: 60 miles each day

Registration: $35 (plus accommodations)

Register online at bikeMS.org or by phone by contacting the Chapter 855-372-1331. Participants must be 18 or older and collect $300 in donations.


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.

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

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

Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to register and receive the call-in information.

SEPTEMBER 22, 2015Hotel RoanokeRoanoke, VA

HONORINGRaymond Smoot, PhD

Senior Fellow and Retired CEO, Virginia Teach Foundation

-and-Michael J. Friedlander, PhD

Founding Executive Director, Virginia Tech Carilion Research Institute

OCTOBER 8, 2015The Jefferson Hotel

Richmond, VA

HONORINGJulious P. Smith, JrChairman Emeritus,

Williams Mullen

EVENTS

DINNER OF CHAMPIONSSAVE THE DATE


CHAPTER NEWS

2015 SCHOLARSHIP RECIPIENTSMultiple sclerosis shouldn’t stand in the way of an education. The National MS Society’s scholarship program exists to help highly qualified students who have been diagnosed with MS or have a parent with MS achieve their dreams of going to college. We are proud to honor the following students for their academic efforts:

A huge thank you to our 2015 Scholarship Program contributors—Davenport Trust, Deep Run High School Marathon Dance, and Miles of Scarves.

To learn about the 2016 scholarship cycle, visit nationalMSsociety.org/scholarship or call 1-800-344-4867. Are you interested in honoring a loved one by sponsoring a 2016 scholarship? Contact [email protected] for more information.

Laken DillowBland, VA

Logan GreenleeCharleston, WV

Mia AntinoneWeirton, WV

Timothy MilesRocky Mount, VA

Morgan RobateauHuntington, WV Brendan

SchwendemanMineral Wells, WV

Ana HamlettRichmond, VA

Tori HollierGlen Allen, VA

Michaela GlovierVirginia Beach, VA

Haley OlsenStafford, VA

Katelyn TuckerRescue, VA

Yasir DowlingNorfolk, VA


EVENTS

2015 WALK MS

A “season of connection” came to a close on May 9th when the last two of our 19 walks across the Chapter took place on a beautiful spring day. We made new friends in team captains, walkers, sponsors and volunteers this year. We took thousands of steps, shared thousands of wishes and hundreds of hugs as we came together to celebrate every person for their strength and courage.

Thank you to every participant who showed up, raised money, recruited family and friends and made Walk MS 2015 a special occasion. We are honored that you joined forces with us to get one step closer to a cure. Fundraising continues through June 26, 2015 to reach incentive prize levels.

SPECIAL THANKS TO OUR SPONSORS:

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 CHALLENGESEPTEMBER 12-13, 2015

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 [email protected].

WALK MS: VIRGINIA SERIES PRESENTED BY:


When Rachel Gansner was diagnosed with multiple sclerosis in July 2006, she connected with the National MS Society to try to find out as much about the disease as she could. Since then, she has been involved in Walk MS, MS Slugfest, and MuckFest MS. But she realized she wanted to do more.

So in November 2014, Gansner kicked off a Do It Yourself Fundraiser, Bend Over Backwards for MS, making a commitment to the MS movement in a new and creative way. “I want to raise awareness about what MS is and show the diversity it brings,” she says.

Gansner has practiced yoga on and off for over 10 years. “I found that it helped keep me calm, responsive, physically active—healthy,” she says. Throughout her practice, she kept hearing about doing 108 sun salutations, a sequence of yoga poses that can be practiced on various levels. This gave her the idea to do 108 days of yoga and ask people to donate $108. On the 108th day in March 2015, she found she had raised more than $10,000 to support critical MS research and programs for people living with MS.

During her journey, at times Gansner got discouraged because she thought she would be a lot better at yoga, but the real lesson she learned was to become more aware of herself and adapt her practice to what she needed that

day. “It’s easy to not do anything, but having this commitment each day helped,” she says. “I began to realize that anything is good even if it was just practicing my breathing.”

She received a lot of support from family, friends and yoga studios, which allowed her to find other people who were interested in participating and hosting fundraisers. She also used the National MS Society online fundraising tools at www.diyMS.org, which allows people to donate directly to the Society and helped her track her progress easily.

“It’s amazing how graciously people are willing to give, so my advice to others who are interested in fundraising is to have the courage to share what you are doing,” Gansner says.

Originally published in Greater Illinois’ MS Connection newsletter.

RACHEL GANSNER BENDS OVER BACKWARDS TO RAISE MS AWARENESS AND FUNDS.

WAYS TO GIVE

BEND OVER BACKWARDS FOR MS


WAYS TO GIVE

DO-IT- YOURSELF FUNDRAISING

Are you passionate about doing something for MS now? Do you like planning fun events and getting people together? Why not do it for the National MS Society?

Visit our DIY Fundraising website, www.diyMS.org, or contact Debbie Cole ([email protected], 804- 591-3043) to get started. We provide lots of tips and tools to help you organize your event and we will support you along the way.

SPECIAL THANKS TO THOSE WHO ORGANIZED RECENT DIY FUNDRAISERS:

Cinderella Walks The Runway! Organizers: Diana & David Journey and Ms. Virginia Jocelyn Riebe

In January, amazing models walked the runaway showing off dresses that were up for purchase and dresses that were donated to Cinderella’s Closet. The event raised $212.

MS Shoot For A Cure! Group Therapy ArcherOrganizers: Group Therapy Archer in Hillsville

In May, MS Shoot For A Cure had 130 in attendance. The event raised over $1,100.

EVENTS

FINISH MSFinish MS is a unique program that unites individuals with the common goal of creating a world free of MS while completing an athletic endurance event of their choice. Finish MS is open to runners, cyclists, swimmers and distance athletes of all types. After registering for Finish MS, you will have access to powerful online fundraising tools to turn your participation in your third-party race event into a race for a good cause.

ON YOUR MARK, GET SET, GO! 1. First, register with the sporting event

of your choice.2. Then, visit www.finishms.org to

register.3. Once you’re fully registered, you’ll

have access to the National MS Society’s online tools to help you reach out to family, friends, and associates, tell your personal story, raise funds, and keep track of your fundraising efforts.

For questions about Finish MS, contact Debbie Cole at [email protected], or 804- 591-3043

13


WAYS TO GIVE

HONORING THERESA OLAH LANETheresa’s grandfather came to America in 1906 and purchased farm land. He lived there until his passing. When her grandmother decided to sell, her parents purchased the farm. Theresa’s father worked for Ford Motor Company while she and her eleven siblings worked the farm providing food for the family and supplying the local stores in the area. They raised cows, pigs, and chickens also. “The work was hard but we were so blessed as we always had plenty of good food to eat.” says Mary Davenport, Theresa’s sister.

She goes on to say “Theresa was diagnosed with multiple sclerosis in her early twenties. She appeared to be in remission for 10 years, but then the symptoms returned and eventually forced her to retire on disability. She was faithful in attending her local support group and tried to help those who were in worse condition than herself.”

Even in her passing, Theresa wanted to help those who face the challenges and struggles of living with MS by leaving a portion of her inheritance to help those in the area. Theresa’s parents set up a trust in which all of their children would be a beneficiary of the trust at their passing. Even though Theresa passed before either of our parents, she was given the opportunity to delegate how she wished her share to be distributed, since she had no children. Mary explains “her wish was for [her]

donation to be kept locally and be used to help those who need a wheel chair, a ramp to be built, food on their table or to obtain needed medicine or any other important need they may have.”

We thank Theresa for her love of people and her desire to give to others.


PLANNED GIVINGMaking a gift in your will or living trust is a simple, flexible and versatile way to support the mission of the National MS Society for years to come.

To learn more about how you can give, visit www.nationalMSsociety.org/plannedgiving.

THERESA OLAH LANE WITH HER HUSBAND, DON LANE


PROGRAMS

WEEKEND ESCAPE: THE BRIAN MASON RESPITE CAMPSEPTEMBER 11-13, 2015 • SMITH MOUNTAIN LAKE, VAWeekend Escape is a respite camp designed to give people with MS and their families, caregivers, and friends an opportunity to take a break and enjoy a weekend of fun, relaxation, and education. A staff of nurses and nursing assistants are available for all participants needing help with personal care.

Registration ($50 for adults and $25 for children 18 and under ) opens July 1, 2015. The registration deadline is August 7, 2015. To register, call the chapter at 1-800-344-4867. Limited space is available.

ABOUT WEEKEND ESCAPEWeekend Escape takes place at the W.E. Skelton 4H Center on Smith Mountain Lake, Virginia.The camp is about 25 miles southeast of Roanoke. More information on the camp can be found online at www.skelton4hcenter.org.

Those with MS and thier families are welcome to attend and accomodations are made so that you will be comfortable and able to have fun! The 4-H Center is fully accessible and all activities are designed for all participants with varying abilities. The Chapter also provides a health care staff so that caregivers get a break as well. All medical assistance is taken care of for the weekend. The center has many barrier-free overnight rooms. Be sure to indicate your accessibility needs and health care needs when you register.

Registration is $50 for adults and $25 for children 18 and under. Weekend includes food, lodging and activities.

Families will have the opportunity to participate putt-putt golf, swimming, horseshoes, crafts,

tennis, fishing, and much more. There are also kid’s activities such as a nature hike, arts and crafts, and a tye dye activity.

On Friday night we play a grand game of Bingo and Saturday night we will have a talent show and formal night showcasing the work of Cinderella’s Closet. The volunteers from Cinderella’s Closet will provide evening gowns and suits, as well as make-overs, for those who would like to participate.

What is the lodging like?Dormitory and hotel style rooms are available. All rooms are clean and air conditioned. Participants must bring their own sheets and towels.

16 MS CONNECTION: SUMMER 201516 MS CONNECTION: SUMMER 2015

RESEARCH

HAVE A VOICE IN MS RESEARCHToday, there are more options than ever before for people with multiple sclerosis to help drive MS research. They can choose to participate in clinical trials, donate DNA through blood samples, or complete health surveys. No matter where they live, what their background is, or what stage of the disease they are in, people with MS are at the heart of MS research. Here are some of the ways you can make your voice count.

PARTICIPATE IN CLINICAL TRIALS From testing a potential new therapy for MS to trying an exercise program to help manage symptoms of fatigue or spasticity, people with MS who participate in clinical trials make it possible to bring new medications and symptom-management strategies from the lab to their doctor’s office.

WHO KNOWS MORE ABOUT MS AND ITS DIVERSE IMPACTS ON LIFE THAN PEOPLE WHO LIVE WITH THIS DISEASE EVERY DAY?

“The willingness of people with MS to participate in research studies and clinical trials is vital to understanding the complexities of the disease and to developing better treatments,” says Timothy Coetzee, PhD, Chief Advocacy, Services and Research Officer at the National MS Society.

“They are the experts - who else knows more about MS and its diverse impacts on life than people who live with this disease every day?”

In fact, researchers are increasingly looking at “patient-reported outcomes,” gathering information directly from individuals participating in studies to better capture how a treatment makes people feel.

For more information on how to participate in current clinical trials, visit www.nationalMSsociety.org/clinicaltrials or search www.clinicaltrials.gov for ongoing MS research.

17NATIONALMSSOCIETY.ORG | 1-800-344-4867 17NATIONALMSSOCIETY.ORG | 1-800-344-4867

NARCOMS: DATA THAT COUNTSParticipating in the North American Research Committee on Multiple Sclerosis, or NARCOMS, is another way people with MS can express their willingness to participate in MS research. Since its founding in 1993, more than 37,500 people with MS across the globe have joined its registry and more than 80 papers with research results utilizing data provided by participants have been published. Anyone with a diagnosis of MS can participate in NARCOMS. Visit www.narcoms.org to learn more.

iConquerMS™: ASK THOSE WITH MS“If you want to know what it is like to live with MS, or how different lifestyle choices impact a person’s quality of life, or what questions people with MS are most interested in exploring, you ask those living with the disease,” says Lisa Emrich, a Washington, DC-based writer and blogger who was diagnosed with MS in 2005.

Emrich is one of the first to sign up to participate in a new initiative, iConquerMS™, a unique patient-centered data collection system that allows people with MS to safely and securely share their health information and ideas for MS research with MS researchers nationwide.

Through its online portal at www.iConquerMS.org, people with MS can share their health information and ideas about research. MS researchers can then use this shared data to find patterns in the disease that may not be visible otherwise, opening the potential to identify causes of MS, determine who will respond best to what therapy, and find new improved treatments for the disease.

iConquerMS™ is focused on research topics driven by people with MS, and governed by people with MS at every step of the process. As part of a larger nationwide research network called PCORnet, iConquerMS™ contributes health data to many research efforts, while also providing MS researchers access to data from millions of people across the country.

To learn more about the many ways you can help drive MS research forward, visit www.nationalMSsociety.org/Research/Participate-in-Research-Studies or call us at 1-800-344-4867.

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.


LIVING WITH MS

MS MOVES WATER AEROBICSMS Moves is a low intensity water aerobics class offered at the Tuckahoe Family YMCA for people living with MS. The class is designed to increase mobility and maintain muscle strength by combining various water walking, stretching and resistance moves. Participants work on improving their overall physical function by enhancing flexibility, balance and endurance. MS Moves takes place in Tuckahoe’s “cool” pool where the water temperature does not exceed 84°F, reducing the risk of overheating in heat sensitive participants.

In speaking to the class’s participants, you will learn quickly that the benefits of regular exercise for people living with MS are amazing. Barbara, who has been attending regularly, was pleased to report her balance is much improved because of taking this class. She also called MS Moves “a wonderful class” which she strongly recommends to others.

Similar to Barbara, Phil has been taking the class for two years and has seen a decrease in his number of falls. Because the class targets specific body parts and is designed for people with MS, he has been able to regain strength and perform exercises in the water he would not normally be able to do on dry land.

The class’s participants are mostly people living with MS; however, the class does not exclude anyone else who wants to participate. Don’t worry if you have never been a star athlete

because the class and instructor let you work at your own pace. Plus most people in the class have a first hand understanding of MS and won’t pass judgment.

It is important to remember to discuss this or any other new exercise program with your doctor before starting to ensure you are healthy enough. If your local gym does not currently offer an MS water aerobics class, inquire about getting one started.

For more information about MS Moves, contact:Tuckahoe Family YMCA9211 Patterson Avenue, Henrico, Virginia 23229Phone: (804) 740-9622

The class meets every Monday, Wednesday, and Friday at 8:45 am.

The Tuckahoe Family YMCA offers a hydraulic lift to enable those who use a wheelchair and are able to be transferred to a chair to have access to the pool.


BENEFITS OF AQUATIC EXERCISEImproves overall physical function including walking, mobility, flexibility, balance and endurance.

May change sensory input. The feeling of decreased weight may lead to a decrease in pain and improvement of other sensory perceptions. These changes may lead to greater ease and range of movement.

Provides a social network. Aquatic groups provide opportunities for social connection and a support system to stay involved in exercise.

Motivation. The positive results of aquatic exercise may also help people with MS stick with an exercise program.

Improves mood. Exercise may ease depression and increase self-esteem. Water techniques may also reduce stress and promote relaxation.

Improves mood. Exercise can help ease depression and increase self-esteem. Water techniques may also reduce stress and promote relaxation.

For more information about the benefits of aquatic exercise visit our website at: www.nationalmssociety.org/Resources-Support/Library-Education-Programs/You-CAN!/Exercise--or-not--in-Water

CHAPTER NEWS

CONNECT WITH USwww.MSVirginia.orgwww.MSWestVirginia.org

www.facebook.comSearch: “National MS Society Virginia-West Virginia Chapter”

www.twitter.com/NMSSVAWV

https://instagram.com/nationalmssociety_vawv

www.youtube.com/nationalmssociety

www.msconnection.org/Blog

ADVOCACY

WV SUCCESSThanks to the wonderful work of our MS Activists at State Action Day in West Virginia, Governor Earl Ray Tomblin signed into law two healthcare related bills—the Patient Protection and Transparency Act (SB 366) and the Caregiver, Advise, Record, Enable (CARE) Act (HB 21000).


Don’t let multiple sclerosis keep you from getting where you need to go, whether to a medical appointment, the grocery store, or a restaurant for a dinner with friends. If you no longer drive because of MS symptoms such as vision issues or spasticity, there are other options for transportation if you know where to look.

REACH OUTThe first place many people with MS look for help with transportation is their own social network. Don’t be afraid to ask friends and family members for a ride: often they are happy for a chance to help out and spend time with you. And they can always say no if it’s inconvenient for them at the time. (In which case, try rescheduling!)

If an appointment is ongoing—a weekly visit to a physical therapist for instance—you might arrange a regular trip with a friend or family member. Sweeten the deal with an offer to pay or split the cost of gasoline, for instance. Even treating the driver to a cup of coffee can help.

Other opportunities to access a ride or joining a carpool may exist in your community, including places of worship, community centers and service organizations. Ask your healthcare providers if they might know of other patients who drive or a carpool that can help get you to their offices.

GO PUBLICTypically, the most affordable way to get around is public transportation, which can include bus routes, subways or light rail services. A good place to start exploring your city or county’s public transit system and its accessibility options is www.publictransportation.org. Here, you can search by state for what’s available near you. Or you can visit the American Public Transportation Association’s website at www.apta.com/resources/links for a list of public transit websites for all 50 states, Washington D.C., and Puerto Rico.

The Americans with Disabilities Act (ADA) requires that any transportation provided to the general public must be available to people with disabilities. The ADA also requires all public transit agencies to provide paratransit services to people who cannot use fixed-route public transportation because of their disability. The Easter Seals Project Action project, a partnership with the U.S. Department of Transportation, Federal Transit Administration, was commissioned in 1988 to improve access to public transportation for people with disabilities. Their website at www.projectaction.org offers a wealth of information on how people with disabilities can use public transit systems confidently and safely.

MONEY MATTERS

TRANSPORTATION OPTIONSBY MYRA GRAY, MSW, LSW


MORE OPTIONSSome health insurance companies may provide transportation or cover costs of transportation to and from medical appointments. Check with your health insurance company to see what they offer. In addition, most individuals enrolled in Medicaid are eligible for transportation to and from medical care. Learn more at www.medicaid.gov.

In general, before you call to arrange transportation through your insurance company or Medicaid, follow these tips:

• Have your member ID number ready • Have the address for pick up and the address

of your destination ready• Know the time and date of the appointment• Specify if you will need a lift or if you need a

cab • Specify if you’re bringing someone with you

If you don’t get the answer you are looking for, ask who else you can contact. This goes for any service you’re inquiring about. Often times, agencies can offer additional information even if they can’t provide the specific service.

Visit www.disability.gov/resource/disability-govs-guide-transportation for additional transportation resources and to learn your transportation rights as a person with a disability. The National MS Society may be able to help connect you with transportation-related resources, as well. Call an MS Navigator at 1-800-344-4867.

Myra Gray, MSW, LSW, is an outreach specialist for the National MS Society. Originally published in Ohio Buckeye’s MS Connection newsletter.

EXPLORE YOUR AREA’S ACCESSIBLE PUBLIC TRANSPORTATION OPTIONS.

STAYING ON THE ROAD If you drive, but MS symptoms are getting in the way, there are options to help keep you on the road. These include adaptive auto equipment or treatment options that may minimize troublesome symptoms. Visit www.nationalMSsociety.org and search for “driving” to learn more.


VOLUNTEER SPOTLIGHT

AARON FISHERBY AARON FISHER, NATIONAL MS SOCIETY, VIRGINIA - WEST VIRGINIA CHAPTER MOVEMENT AMBASSADOR

If I could give my younger self a bit of advice, it would be to “take each day as it comes.” My name is Aaron Fisher and thirteen years ago I was diagnosed with MS. I was 26 years old and was newly married to my wife, Danielle. In December, 2001, I awoke one morning with a severe headache and took medicine that whole day. The next morning we were leaving to go to Danielle’s parents’ for Christmas, I could hardly walk and looked like someone who was drunk. Danielle drove us to West Virginia. The symptoms kept getting worse. My mother-in-law encouraged me to go to the hospital to get checked out. I finally went and received a CT scan as part of the evaluation. When the doctor came in the room and put his hand on my shoulder, I thought, “Oh Lord, I’m going to die!” He said he saw something there that I needed to see my doctor in Virginia and have him check it out.I have problems with my left leg, balance, and eyesight as a result of MS. My wife thought it was a lot to adjust to, but despite relapses and many hospitalizations over the years, she tells me not to panic. As a nurse, she often reminds me that healthy people even live one day at a time. That’s how we live our lives, but it took me a long time to learn that I can make all the plans I want as long as I remain focused on managing the day that’s happening right now. ‘Don’t panic’ became Danielle’s and my motto, and it helped us survive many tough periods. When something goes wrong, it’s never as bad as it seems. Think of it as you simply having extra responsibilities and make sure that you don’t load too much onto your plate. Now that I can live my life one day at a time, and better deal with my MS, I am able to reach out to help others with dealing with their MS the best I can. We have met a lot of great people while doing things with the MS Society over the years. I truly believe there is a cure for MS coming in the near future; we just have to stay positive and keep learning from others.

NOW THAT I CAN LIVE MY LIFE ONE DAY AT A TIME, AND BETTER DEAL WITH MY MS, I AM ABLE TO REACH OUT TO HELP OTHERS WITH DEALING WITH THEIR MS THE BEST I CAN. WE HAVE MET A LOT OF GREAT PEOPLE WHILE DOING THINGS WITH THE SOCIETY OVER THE YEARS.

22 MS CONNECTION: SPRING 2015


COMMUNITY CALENDAR PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MS 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 pm • Neurosciences Conference RoomRiverside 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.

VALLEY HEALTH WELLNESS CENTER SUPPORT GROUP1st Friday of the Month at 6 pm Valley Health Wellness Center (Conference Room A), Campus Blvd, Winchester, VA 22601 Leader: Betsy 540-327-3967 or [email protected]

SENTARA MULTIPLE SCLEROSIS SUPPORT GROUP June 18, 2015 from 5-5:45 pmSentara Neurology Specialists- 1950 Glenn Mitchell Drive, Suite 200, Virginia Beach, VA 23456For more information, please call 757-507-0604.

CAN DO MULTIPLE SCLEROSIS WEBINARJoin 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 14, 2015 8:00 – 9:15 p.m.: Coping Effectively with Anger in Your Relationships

Please join Psychologist, Peggy Crawford, and Physical Therapist, Sue Kushner, for a discussion of some of the more common triggers for anger, the impact of conflict on relationships and strategies for improving communication and coping constructively with anger.

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


When people are newly diagnosed, attending their first multiple sclerosis support group meeting may evoke an array of emotions. Some people might feel relief in a community that understands MS, while others might feel sad in confronting their “new life” with a chronic illness, and may feel even more isolated. While such feelings are normal and should be acknowledged, persevering to make even one connection can help people with MS learn more about how to live with the disease and share experiences, even if their lives seem on the surface very different.

That was the case for Linda Gill and Mary Hogen, who separately attended their first Society support group meeting in the 1990s shortly after they were diagnosed. While they each continued to attend their local support groups, their feelings of isolation remained.

Linda, originally from Detroit and now a resident of Hudson, Wisconsin, is African American. And though MS affects most racial/ethnic groups, it was perceived to be far more common in Caucasians. “Right after I found out about my MS, I connected to the Society,” Linda says. However, no matter how many meetings or educational programs she attended, she was often the only African American in the room.

Mary, originally from Iowa and a resident of White Bear Lake, Minnesota, is Caucasian and was born hard of hearing. She primarily uses American Sign Language (ASL) to communicate in groups of people and attended support group meetings with a hearing interpreter. She, too, felt disconnected from other participants.

One day, both Linda and Mary attended the same program about MS-related fatigue. “There was a big group of us, 22 maybe, and Mary mentioned something about it being hard to make friends,” Linda says. “I understood what

LINDA (LEFT) AND MARY (RIGHT).

LIVING WITH MS

THE POWER OF CONNECTIONBY MAGGIE FLANAGAN


she was going through. My husband and I were the only people in the room who were black. So I decided we should be friends.”

Linda and Mary exchanged email addresses at the program and it wasn’t long before they formed a life-long bond. In an effort to impress Mary, Linda even decided she would learn ASL. “I wanted to learn how to sign so badly! And then Mary got digital hearing aids. I was so surprised by how she could all of a sudden hear me,” remembers Linda.

During one of their email exchanges, Linda told Mary that she and another woman were going to start an MS support group, officially titled the Metro Area MS Group for People of Color. Mary responded, “That’s great! I wish I could join.”

“Isn’t white a color?” Linda replied. “Then see you next Saturday.” Since then, for more than five years, Mary has been attending that support group. For the first few years, she was the only white person, but now there are other white people who regularly attend, as well as some people without MS, including care partners, family members and people affected by other chronic illnesses.

“We have so much fun. We will discuss some MS-related things, and we’ll focus on it when it’s necessary, but our group is more about enjoying life together,” says Linda.

The group meets the fourth Saturday of every month at the Sumner Library in Minneapolis. Together, attendees go to plays, throw holiday parties, do Zumba, and host barbecues. Most importantly, they laugh a lot.

“Linda is one of the funniest people I’ve ever met. But really it’s just nice to be able to say to somebody ‘I’m too tired to do this’ and not have to make an excuse,” says Mary. “When you’re with people who have MS, and you’re walking very slowly, the people you’re with walk slowly, too. They don’t leave you behind 20 feet. People don’t remember how important that is, to walk together. It’s the understanding that makes it easier.”

THERE ARE MANY OPPORTUNITIES TO CREATE MEANINGFUL CONNECTIONS WITH PEOPLE WHO UNDERSTAND MS.

Maggie Flanagan is a staff member at the Society. Article originally published in Upper Midwest’s MS Connection newsletter.

GET CONNECTEDThere are many opportunities both online and in person to create meaningful connections with other people who understand MS. To find what is available in your area, call 1-800-344-4867. Also visit www.MSconnection.org, the Society’s online community to connect with other people who are facing experiences similar to yours of living with MS.


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

26

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

Chesapeake 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 GroupFourth Wednesday: 10:30 am-12:30 pmRiverside Wellness and Fitness Center7516 Hospital Drive, Gloucester, VALeader: Barbara 804-695-9950

African American Inspirational GroupFirst Thursday: 11 amHampton Public Library, 936 Big Bethel RoadLeader: 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

CENTRAL VIRGINIATuckahoe Morning Group MS & Neurological SupportSecond Thursday: 10:15-11:30 am Tuckahoe YMCA, 9211 Patterson Ave, Henrico, VA Leader: Darlene 804-346-2040

Hopewell GroupSecond Thursday: 10-11:30 amRiver View on the Appomattox (201 Eppes St.)Leader: Melanie 804-526-9129

Petersburg Evening GroupThird Thursday: 6-8 pmSouthside Regional Hospital, Third Flr ClassroomLeader: Quennette 434-246-6007, 804-731-9069

Smyelin MS Support Group (Chesterfield)Third Wednesday: 12-2 pmChesterfield Fire Station #4 2600 Polo Parkway, Midlothian, VALeader: 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 Classroom, 5700 Fitzhugh Ave.Leader: Lorenzo 804-921-9712

Richmond (VA Home) For those with advanced MSEvery Monday: 11 am1101 Hampton St.Leader: Judi 804-359-4093The InvinciblesThird Tuesday: 7-8:30 pmHealthSouth Fredericksburg, 300 Park Hill DriveLeader: Belinda 540-373-4377


MS Options Support GroupSecond Tuesday: 12-1 pmMeadows Presbyterian Church 2200 Angus Road, Charlottesville, VALeader: Lisa 434-296-5964

MS Lunch Bunch Fourth Thursday: 11:30 am-1 pmMartha Jefferson House, 1600 Gordon Ave, Charlottesville, VALeader: Kitty 434-293-3573

Care Partner Support GroupFourth Thursday: 6:30-8pmChapter’s Charolttesville Office, Conf. Room1020 Carrington Place, Ste. 100, Charlottesville, VALeader: Ray 434-962-5643

SOUTH WESTERN VIRGINIARoanoke Self Help GroupFourth Thursday: 6:30- 8 pmRoanoke Valley Association of Realtors (RVAR)4358 Starkey Road, Roanoke VALeader : Suzanne 540-404-1167

Lexington/Rockbridge Self Help GroupSecond Thursday: 5:30 pm-7 pmRE Lee Memorial Church (Library)123 W Washington St, Lexington City, VALeader: Susan 540-460-7091

New River Valley Support Group First Tuesday: 6:30-8 pmMontgomery County Dept. of Social Services210 Pepper St S Ste B, Christiansburg, VA Leader: Jeff 540-230-3430

Smith Mountain Lake Self Help Group First Wednesday: 12-1 p.m. 15353 Moneta Rd, Moneta, VALeader: Ken 540-576-3330

Augusta County MS Support Group Third Thursday: 6-8 pmAugust County Library1759 Jefferson Hwy, Fishersville, VA Leader: Sandra 540-294-3063Co-Leader: Cheryl 804-678- 8280

Peer Assisted and Led Support Group (PALS)Second Monday: 6:15 pm 1820 Heritage Center Way, Harrisonburg, VA Leader: Carol 540-432-9858

Twin County MS Support Group Second Tuesday: 7 pm Carroll County Public Library 101 Beaver Dam Rd. , HillsvilleLeader: Regina 276-766-9228

WEST VIRGINIAMade Strong Support GroupThird Thursday: 6-7:30 pm200 Fernandez Drive, Beckley, WV Leader: Melinda 304-890-6284

Bluefield/Princeton Support Group Fourth Tuesday: 7 pm Call for location (Bluefield, WV)Leader: Doug 304-753-9126Women’s MS Support Group Second Monday: 7 pm Emmanuel Baptist Church 1401 Washington Street , W. Charleston, WVLeader: Jan 304-744-1994

Huntington Group First Tuesday: 6-8 pm Edwards Comprehensive Cancer Center 2nd Floor Conference Room1400 Hal Greer Blvd., Huntington, WV

ADDITIONAL SUPPORT OPPORTUNITIES

ON 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).

NationalMultiple SclerosisSocietyVirginia - West Virginia Chapter4200 Innslake DriveSuite 301Glen Allen, VA 23060

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

Date post:	22-Jul-2016
Category:	Documents
Upload:	national-multiple-sclerosis-society-virginia-west-virginia-chapter
View:	216 times
Download:	1 times

Summer 2015 MS Connection

Documents