SPRING 2014 CENTRAL & EASTERN VIRGINIA CHAPTER
MS CONNECTION NEWSLETTER
SPRING INTO BIKING WOMEN ON THE MOVE SEASON PAGE 02 PAGE 07
INSIDE 04 THIS ISSUE
CONNECT AT: NATIONALMS SOCIETY.ORG
09
4TH ANNUAL MS KIDS CAMP
13
ANNUAL GIVING
20
NEW RESEARCH ON WELLNESS AND LIFESTYLE
02
MS CONNECTION: SPRING 2014
EVENTS
SPRING INTO BIKING SEASON
It is hard to believe, but spring is here. And that means it is time to dust off the bike, register for Bike MS, and start training and fundraising. Whether you’re new to Bike MS or ride every year, together we will raise money, have fun, and make a difference in the lives of people living with MS. Riders are fully supported with rest stops every 10-15 miles, Support and Gear (SAG) vehicles, medics, and bike mechanics from sponsoring bike shops.
THE CENTRAL & EASTERN VIRGINIA CHAPTER HAS TWO EXCITING BIKE MS OPTIONS THIS YEAR: BIKE MS: VIRGINIA’S OCEAN TO BAY RIDE—MAY 31-JUNE 1, 2014
Enjoy the scenic roads of Virginia’s Eastern Shore as you travel through the quaint towns, pedal past corn fields, and experience the serene beauty of the Shore. Location: Virginia’s Eastern Shore Route Options: May 31, 2014 » 1 Day » 36, 75, or 100 miles May 31-June 1, 2014 » 2 Days » 36, 75, or 100 miles each day Registration: $45—Plus Accommodations
BIKE MS: RIDE VIRGINIA—SEPTEMBER 6-7, 2014
Enjoy the beautiful roads winding through the heart of Virginia as you travel past historic sites and rustic farmlands embarking on an unforgettable journey. Location: Between Richmond and Williamsburg Route Options: September 7, 2014 » 1 Day » 25 or 50 miles September 6-7, 2014 » 2 Days » 75 or 100 miles each day Registration: $35 through 4/30/14—Accommodations not included *New for 2014: we will be having a spectacular Tailgate Party at Bike MS!
REGISTER TODAY: WWW.IRIDEFORMS.ORG OR 757-319-4253 Why not consider riding in both events this year? Contact Karla McCarraher at 757-319-4253 to register for Virginia’s Ocean to Bay Ride and Ride Virginia. You will receive a $10 discount on registration for participating in both rides.
Scan this QR code to visit the Bike MS website.
03
NATIONALMSSOCIETY.ORG | 1-800-344-4867
EVENTS
BE A PART OF THE “I RIDE WITH MS” PROGRAM “I Ride with MS” is a special National Multiple Sclerosis Society program that celebrates Bike MS cyclists who are also living with multiple sclerosis. Members of the “I Ride with MS” program enjoy special Bike MS recognition and receive a complimentary “I Ride with MS” jersey. “I Ride with MS” participants are not only committed to cycling to create a world free of MS, but also serve to inspire all who are part of the MS movement.
If you would like to be a part of the “I Ride With MS” program, please sign up when you register for Bike MS at www.irideforms.org. If you are already registered, please contact Karla McCarraher at 757-319-4253.
THANK YOU TO OUR NATIONAL SPONSORS: NATIONAL MULTIPLE SCLEROSIS SOCIETY CENTRAL & EASTERN VIRGINIA CHAPTER Richmond Office: 4200 Innslake Drive, Suite 301 Glen Allen, VA 23060 Virginia Beach Office: 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452 1-800-344-4867 • www.MSVirginia.org Chairman: Frank N. Cowan Chapter President: Sherri Ellis Design: Robyn M. Hirsch © 2014 National Multiple Sclerosis Society, Central & Eastern Virginia Chapter
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
04
MS CONNECTION: SPRING 2014
LIVING WITH MS
CONNECT AT: NATIONALMSSOCIETY.ORG The National Multiple Sclerosis Society’s website, www.nationalMSsociety.org, connects people like yourself who are living with MS with the information, people and resources that can help you and your loved ones live your best lives. With that in mind, many exciting changes to the site have taken place to improve your ability to connect to:
INFORMATION Updated navigation, new content and improved searching help you find what you’re looking for faster.
EACH OTHER Our growing online community is even easier to access, making it easier for you to share your experience with others living with MS, healthcare providers and MS researchers.
THE MS MOVEMENT Several new features make joining the MS movement easier than ever. These features include: a “My Profile” section where you can access your profile information, set preferences and track your involvement; a mobile-friendly design that lets you view the site from your smartphone, tablet or other mobile device; and easier-to-read content and accessibility for anyone using assistive devices like screen readers.
YOU TALKED, WE LISTENED Many of you – people living with MS, friends and family members, event participants, volunteers, donors and professionals – contributed ideas and input toward the new site. You shared what information matters most to you, tested the site as it was developed and made suggestions – you even helped get rid of a few “bugs.” Now, the next generation of www.nationalMSsociety.org is designed to help you: • Find relevant information, services, and resources;
programs,
• Connect with others, share information and get support; • Participate in events, advocate for change, raise awareness, champion research, and discover more ways to engage. Take some time today to tour the new site at www.nationalMSsociety.org, and let us know what you think. If you happen to find a bug that snuck through the cracks, let us know that too.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
05
EDUCATION
LINKS TELECONFERENCE SERIES
We are pleased to present a series of teleconferences for those with MS and their families entitled “LINKS.” Whether you just received a diagnosis of MS or have been living with it for a long time--the goal of this series is to “link” you with information and tips on how to maintain your quality of life in the years ahead.
This nine week series will run Tuesday nights (7-8 pm) during April and May, 2014. Each call will be conducted using a toll-free number, so you can call from the comfort of your home. Participate in several calls or just the one that interests you. To learn more or to register, contact the chapter at 804-353-5008 option 2 or visit our website MSVirginia.org.
APRIL 8TH: APRIL 15TH: APRIL 22ND: APRIL 29TH: MAY 6TH: MAY 13TH: MAY 20TH: MAY 27TH:
GAIT (WALKING PROBLEMS) AND MS HOW KIDS PERCEIVE MS EMOTIONAL HEALTH AND MS WHY EVERYONE NEEDS A POWER OF ATTORNEY MS: THE AFRICAN-AMERICAN EXPERIENCE GOTTA GO, GOTTA GO! AN UPDATE ON BLADDER PROBLEMS IN INDIVIDUALS LIVING WITH MS COMPLIMENTARY APPROACH TO MS PROGRESS IN TREATMENT OPTIONS AND MS RESEARCH
*UNABLE TO PARTICIPATE ON THE EMPLOYMENT OR LINKS TELECONFERENCE SERIES CALL(S), BUT STILL INTERESTED IN LISTENING TO THE PRESENTATION? The teleconferences have been/will be recorded and will be distributed upon request. Contact Robyn M. Hirsch at robyn.hirsch@nmss.org or 757-319-4252 to request a copy.
06 EVENTS
MS CONNECTION: SPRING 2014
WALK MS—EVERY CONNECTION COUNTS
Scan this QR code to visit the walk MS website.
WALK MS CONNECTS PEOPLE LIVING WITH MS AND THOSE WHO CARE ABOUT THEM. IT IS A DAY WHEN WE COME TOGETHER TO SHOW THE POWER OF OUR CONNECTIONS. Register for a walk near you and start fundraising today. The money we raise at Walk MS supports life changing programs for the more than 5,600 people living with MS in Central & Eastern Virginia and drives cutting-edge research. Every step matters, every dollar counts, every person makes a difference!
Newport News, VA April 5, 2014
Virginia Beach, VA April 6, 2014
Richmond, VA April 26, 2014
Location: Newport News Park Check-In: 8:00 am Walk Start: 9:00 am
Location: Mount Trashmore Check-In: 1:00 pm Walk Start: 2:00 pm
Location: Innsbrook Check-In: 9:00 am Walk Start: 10:00 am
Fredericksburg, VA May 3, 2014
Kilmarnock, VA May 10, 2014
Location: HealthSouth Rehabilitation Hospital Check-In: 8:00 am Walk Start: 9:00 am
Location: Grace Episcopal Church Check-In: 8:30 am Walk Start: 9:30 am
For more information or to register, visit iwalkforms.org or contact Clare Lorio at 804-591-3037 or clare.lorio@nmss.org.
07
NATIONALMSSOCIETY.ORG | 1-800-344-4867
EVENTS
WOMEN ON THE MOVE LUNCHEON WANT TO LISTEN TO GREAT MUSIC, NETWORK, ENJOY A FABULOUS LUNCH, AND SHOW OFF YOUR FAVORITE PAIR OF SHOES? THEN YOU’LL WANT TO JOIN US FOR THIS YEAR’S WOMEN ON THE MOVE LUNCHEON. The 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. We have two locations and two fabulous entertainers who will be sharing their story of living with MS.
VIRGINIA BEACH (Founder’s Inn & Spa) TUESDAY, JUNE 10TH, 2014
RICHMOND (Downtown Richmond Marriott) THURSDAY, JUNE 12TH, 2014
Doors open at 11:00 am Lunch & guest speaker begin at 12:00 pm
Doors open at 11:00 am Lunch & guest speaker begin at 12:00 pm
CELEBRITY SPEAKER: DAVID OSMOND
CELEBRITY SPEAKER: JULIE ROBERTS
David Osmond has music running through his veins. He’s the 4th son of Alan Osmond, oldest of the performing Osmond Brothers. He began performing as the lead singer with his own brothers when he was only four years old. While playing his music and getting attendees’ toes tapping, the former American Idol contestent will share about his journey living with MS.
Being diagnosed with MS when she was 27 was just the first in a series of challenges that country music star Julie Roberts has faced over the last seven years. However, Julie can’t be kept down; she seeks to share her story with others and help those living with MS move their lives forward.
To sponsor the event or a table contact Tiffany Epley at tiffany.epley@nmss.org or 804-591-3036. To purchase individual tickets, visit the “join an event” section of our website–MSVirginia.org.
08
MS CONNECTION: SPRING 2014
RESEARCH
LOCAL RESEARCHER AWARDED PILOT RESEARCH GRANT
Unsong Oh, MD of the Virginia Commonwealth University’s Multiple Sclerosis Treatment and Research Center received a $44,000 Pilot Research Grant from the National MS Society to study the effect of a compound on central nervous system inflammatory axonal degeneration. In his study, he is looking at mitochondria, which are the “energy factory” inside cells. In nerve cells, they help to maintain the integrity of nerve fibers, but may malfunction in MS, leading to nerve tissue damage and disability. Dr. Oh and his team are studying the effect of a compound that blocks a component of mitochondria on MS-like disease in mice to determine the effects on preventing or reducing nerve cell damage. The National MS Society’s NOW Campaign focuses on three key areas in research: STOP disease progression, RESTORE function, and END MS forever. Studies like Dr. Oh’s fall in the “STOP” category and is just one of many studies taking place all over the United States, and even the world, that are looking to stop MS in its tracks. The National MS Society takes its investment in research seriously by carefully vetting all applications and supporting those with a promising return. At the end of 2013, the Society has awarded over $818 million in research funding since its first research grant in the 1950s. In 2014, the National MS Society has taken an aggressive step towards funding research with an increased investment of $50 million. With your help, we can ensure this goal can be met to continue to drive research forward. Contact Sherri Ellis at 804-591-3030 to learn more about the NOW Campaign and how you can take part.
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.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
PROGRAMS
4TH ANNUAL MS KIDS CAMP AUGUST 14-17, 2014 We are pleased to extend an invitation to children ages 7-15 of a parent or guardian living with multiple sclerosis for a weekend of fun and learning at Camp Jumonville in Hopwood, Pennsylvania.
Come join children from other Chapters of the National Multiple Sclerosis Society for a weekend of swimming, zip lines, and more. This special weekend offers a great opportunity for kids who have a parent or guardian with MS to connect with one another in a fun and supportive environment.
PACKAGE INCLUDES: • • • •
Room accommodations (4 days & 3 nights) 9 meals & snacks Use of the camp facilities Transportation to/from camp will be provided by the Chapter (with start in Richmond, Virginia and stops will be added to the route based on camper locations.)
COST PER WEEKEND:
• $25 per child (ages 7-15) • Scholarships are available • Space is LIMITED so register early!
APPLICATIONS:
• Camp applications can be requested through June 1, 2014. • After you contact the chapter about your interest, you will receive a camp application that needs to be completed and returned, along with payment, to the chapter by July 1, 2014. If you would like an application for MS Kids Camp or you have questions, please contact Kathryn Zapach at 804-591-3039 or kathryn.zapach@nmss.org.
099
10
MS CONNECTION: SPRING 2014
CHAPTER NEWS
MS AWARENESS WEEK A SUCCESS! MULTIPLE SCLEROSIS IN THE NEWS
In advance of MS Awareness Week (March 3-9, 2014), the Chapter contacted local news anchors in Richmond and Hampton Roads and encouraged them to wear orange to raise awareness. In addition to donning that signature orange, many anchors gave a shout-out during their live telecasts and on their social media platforms about the National MS Society, multiple sclerosis, and MS Awareness Week. A few stations even took it a step further and put together special pieces on pediatric MS and current MS research.
FLAG DOWN MULTIPLE SCLEROSIS
Because EVERY CONNECTION COUNTS, the chapter put together a visual display to spread awareness about MS. At Flag Down MS, we decorated a prominent location in Richmond and Hampton Roads with orange flags to represent each person living with MS in the area.
RICHMOND: INNSBROOK
HAMPTON ROADS: THALIA LYNN BAPTIST CHURCH, VB
OTHER MS AWARENESS WEEK ACTIVITIES NORFOLK ADMIRALS HOCKEY NIGHT
STAFF ORANGE PARTY
NATIONALMSSOCIETY.ORG | 1-800-344-4867
11
PROGRAMS
BECOME A MOVEMENT AMBASSADOR INSPIRE. EDUCATE. MOVE.
Educating and engaging thousands of people in the movement to end MS is a big job and the National MS Society, Central & Eastern Virginia Chapter can’t do it alone. That’s why we are recruiting volunteers for our Movement Ambassador Program.
WHAT IS A MOVEMENT AMBASSADOR?
Simply put, Movement Ambassadors are people who want to do something now to end MS and are passionate about engaging other people in the movement. Movement Ambassadors are people connected to MS in some way, whether by living with the disease, participating in our events, volunteering or donating to our organization. Individuals in each one of these groups has a story to tell and can be a part of our mission!
HOW DO MOVEMENT AMBASSADORS HELP?
The primary role of Movement Ambassadors is to engage others. Movement Ambassadors can do a wide range of awareness activities from simply talking to someone about your involvement with the National MS Society to manning information tables at local health fairs and providing presentations to community groups. Movement Ambassadors act as an army of people spreading awareness about MS and the National MS Society in our local community.
HOW CAN I BECOME A MOVEMENT AMBASSADOR?
If you are interested in becoming a Movement Ambassador or would like more information, please call or email Robyn Hirsch at 757-319-4252 or robyn.hirsch@nmss.org. Interested volunteers will be trained to be spokespersons representing the National Multiple Sclerosis Society, Central & Eastern Virginia Chapter and will be provided with all needed guidelines and materials.
12
MS CONNECTION: SPRING 2014
ADVOCACY
MS ACTION DAY AT THE GENERAL ASSEMBLY On January 27, over 50 activists from across the Commonwealth made their annual trip to Richmond to visit the General Assembly to advocate for issues important to those living with multiple sclerosis. The three Virginia chapters of the National MS Society sent representatives to meet with their legislators on key issues such as: increasing affordable access to prescription medication, expanding the state Medicaid program, increasing the budget for the Livable Home Tax Credit, and supporting the Lifespan Respite Care Voucher Program. After being trained on the issues, volunteers made over 100 visits to legislative offices to ensure policy makers knew about the above-mentioned issues and how anyone faced with a chronic illness or physical disability would benefit from this legislation— not just the nearly 12,00 Virginians living with MS. For those of you who could not make it to Action Day, call, write, or email your legislators about these important issues. Visits from our volunteers on our annual State Action Day make a difference, but legislators love to hear from their constituents. Whether the General Assembly is in session or not, MS Activists are still needed to make in-district visits, write letters to the editor, and keep an eye on issues in their communities that can be changed with advocacy efforts. If you are interested in becoming an MS Activist, contact Kathryn Zapach at 804-591-3039 or kathryn.zapach@nmss.org to learn more.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
13
WAYS TO GIVE
ANNUAL GIVING
We have officially entered the spring season and we need your support to keep us moving forward! Help us by making an individual gift or workplace giving pledge, so that we can continue to provide quality programs and services to the 5,600 people living with MS in Central & Eastern Virginia. If you wish, your contribution can be designated to Programs & Services, Scholarships, MS Kids Camp, Research or Financial Assistance. No donation is too small and every donation counts.
DID YOU KNOW THAT A GIFT OF $1,000 OR MORE PROVIDES YOU INCENTIVES AS A GOLDED CIRCLE MEMBER?
As a Golden Circle Member, you are part of a group of determined individuals who invest in the MS movement. As a Golden Circle member, you have access to exciting research news and our awardwinning publications. Plus, you’ll receive invitations to select events featuring MS researchers and Society leadership.
WORKPLACE GIVING
Each year, approximately $4.8 billion is donated to America’s charities through workplace giving campaigns. Workplace giving offers the convenience of automatic payroll deductions without losing the tax benefits of charitable giving. Often times employers match employee contributions; therefore, workplace giving provides you the opportunity to directly influence your company’s philanthropic endeavors. For the charity, even a small pledge makes an impact when it is increased by the employer’s matching funds.
UNITED WAY CODES: Greater Richmond & Petersburg: 3025 • Rappahannock: 6049 Hampton Roads: Write In National MS Society on the Pledge Card
COMBINED FEDERAL CAMPAIGN (CFC): Central Virginia: 46654 • Hampton Roads: 48028
COMMONWEALTH OF VIRGINIA CAMPAIGN (CVC): Federal: 46654 • State: 6090
14
MS CONNECTION: SPRING 2014
WAYS TO GIVE
BAD FOR A GOOD CAUSE When St. Louis resident John Simon was diagnosed with multiple sclerosis in 2008 at age 29, he decided to stay positive, be himself and keep his sense of humor.
WITH A LITTLE HELP FROM THEIR FRIENDS, JOHN AND TONY CAME UP WITH A VERY UNIQUE DO IT YOURSELF FUNDRAISING IDEA. “Obviously, MS is a serious matter, but this situation really sums up John’s endearing personality and why he has such a close network of friends and family,” says John’s good friend Tony Cerame. “He knew it wouldn’t be easy for us to take the news, so he disarmed the situation by continuing to be who he is – one of the funniest and most genuine friends we have.”
A CREATIVE PROCESS
John and Tony wanted to do something to support efforts to end MS. So they put their heads together, and with a little help from their friends, came up with a very unique Do It Yourself (DIY) fundraising idea: Going to a concert that is so bad, you should be paid to attend … sober.
BACKSTREET BOYS 4 MS JOHN SIMON, JASON STRUTTMANN AND TONY CERAME “Coming up with the idea for the fundraiser, though, was a lot more than one person thinking of a joke,” Tony says. “It was a creative process that grew into something bigger.” In 2012, they tested the waters with one of the worst concerts they could think of – Creed. Tony proposed seeing the group after hearing that the lead singer was in St. Louis to perform at a local casino. “We sat and wondered just how terrible that show would be,” John says. “Tony mentioned trying to get people to pledge money to make someone sit through that pile of garbage for a good cause. Choosing MS was a pretty easy decision.”
NATIONALMSSOCIETY.ORG | 1-800-344-4867
SPRAYTANS FOR MS
When the friends learned the Backstreet Boys were coming to town with one of the cast members on MTV’s “Jersey Shore,” they figured there was no question they had to do it again. So Tony, John and their friend Jason Struttmann offered incentives with fundraising tiers, such as shaving and dyeing a chinstrap beard, frosting hair tips, and even going as far as getting spray tans for progressively higher amounts of support pledged. “The spray tan was totally weird, and I don’t know how people repeatedly get those things,” Tony says. “That said, it was one of the funniest things I ever did.” On the evening of the concert, August 3, 2013, they were in for a treat. Because of their getups, they got a lot of attention. “The first 45 minutes or so were completely surreal,” John says. “We were rock stars.” “Can I say it wasn’t torture and still convince people to send us to one of these next year?” Tony wonders. “The music certainly didn’t help, but it wasn’t bad enough to ruin a couple of great nights with some great friends.” What they called Creed 4 MS and Backstreet Boys 4 MS turned out to be a winning combination, with the friends raising a total of $4,498 in 2013.
A DEEPER MEANING
Of course, taste in music is subjective. Although they received a few negative comments from some avid Creed fans last year, this year’s feedback was mostly positive.
15 “CAN I SAY IT WASN’T TORTURE AND STILL CONVINCE PEOPLE TO SEND US TO ONE OF THESE NEXT YEAR?” TONY SAYS. “Our friends have been very supportive and truly excited to be a part of it,” Tony says. “And we’ve made a number of new friends along the way.” Even though their fundraisers began as a fun way to support the cause, it now means much more to these young men. “The most important feedback is how many people contact me and tell me about their experience with MS,” John says. “I’ve become much more aware of how many people the disease actually affects.” Tony believes the key to a successful DIY fundraiser is to think of something that is funny and will keep people engaged through the entire process, such as fundraising tier incentives. “The basis for our success has been finding a way to make things fun for the donors and keeping them involved right to the end, when we go to the show,” Tony says. “We found something different, and while it may not appeal to everyone, the fact that it’s unique drives its success.” Learn how to start your own DIY event at www.doityourselfMS.org. Originally published in the Gateway Area Chapter’s MSConnection newsletter.
16
MS CONNECTION: SPRING 2014
EVENTS
EVENTS
Check out the DIY Fundraising area on the “Join an Event” section of our website, MSVirginia.org. We provide lots of tips and tools to help you organize your event and we will support you along the way.
Finish 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 thirdparty race event into a race for a good cause.
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?
HERE ARE A FEW DIY’S COMING YOUR WAY: • Harley Davidson Poker Run - May 17, 2014 • Victory Lady Spring Fling – June 7, 2014 The chapter would like to give a BIG SHOUT OUT to Owens & Minor for hosting their annual BowlA-Thon that raised $6,776.25! Over 100 Owens & Minor employees, friends and family came out for a morning of bowling at Uptown Alley on February 8. Each bowling team was challenged to raise at least $100, but many went above and beyond, contributing to their great success. Funds were also raised through a raffle and anauction. Thank you Uptown Alley for hosting the Owens & Minor Bowl-A-Thon. Interested in hosting a DIY event, contact Tiffany Epley, Development Manager, at tiffany.epley@ nmss.org or 804- 591-3036.
FINISH MS
ON YOUR MARK, GET SET, GO! 1. First, register with the sporting event of your choice. 2. Then, visit our website–MSVirginia. org>Join an Event>Finish MS 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 Tiffany Epley, Development Manager, at tiffany.epley@nmss.org or 804-5913036.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
17
SUPPORT
MY SOLUTIONS FOR MS HELPS CONNECT YOUNG ADULTS LIVING WITH MS THE CENTRAL & EASTERN VIRGINIA CHAPTER INVITES THOSE LIVING WITH MS IN THEIR 20’S AND 30’S TO JOIN AN ONLINE BASED MS SUPPORT GROUP JUST FOR THEM! As a My Solutions member, you will: • Stay connected with other members everyday on our Facebook page; • Share thoughts and participate in weekly discussion topics; • Learn about MS related events happening in our area; and • Develop new relationships and make friends who, just like you, understand the daily challenges of being young with a multiple sclerosis diagnosis. To become a member, visit: http://bit. ly/MySolutions Please note: This is a special group designed for younger adults under forty years of age. All participants will be screened by Chapter staff prior to full registrations to ensure they comply with the age requirement.
My Solutions connects young adults with one another via a private Facebook group. MS is a disease that primarily affects young people in the prime of their lives. The group launched in January of 2012 with the goal of connecting with one of the most difficult to reach populations living with MS–young adults. Balancing school, careers, relationships and families alongside a chronic disease is challenging. The importance of having a group of peers who are living through the same symptoms can be a useful outlet. This is especially true because, no matter how many strong support systems one has in their life— spouses, families, friends, kids or even doctors—none of them necessarily understand what one living with MS is going through. This Facebook group allows a member to log on and post at any time of the day or night about any topic. The portability of an online group can provide a measure of support when a member has the need to vent or to ask a simple question. If you have any questions, please contact Jessica Ramirez at: jessica.ramirez@nmss.org or 804591-3038.
18
MS CONNECTION: SPRING 2014
LIVING WITH MS
EXERCISE: OUR DAILY ALLOWANCE BY JULIE STACHOWIAK, P H D
OK, we all know that we should be exercising. Besides all of the great stuff that exercise does for everyone (such as lowered cardiovascular risk and increased muscle mass), research on the effects of exercise in multiple sclerosis has shown that it can improve mood, MS-related fatigue, and cognitive function. Notably, exercise has also been shown to increase overall daily activity level, functional capacity, and balance in people with MS, as well. In total, this adds up to a measurable increase in quality of life.
WHY NOT?
There is even limited evidence in animal models that exercise therapy may halt, slow or reverse disease progression of MS. Exercise therapy is an individualized exercise plan typically prescribed by a doctor and done under the supervision of a physical therapist or other healthcare provider. There are specific guidelines, based on scientific data, for programs combining resistance and endurance testing. While that is great and all, raise your hand if you are currently participating in an exercise therapy program. See what I mean? Studies show that fewer than 20% of people in the general U.S. population get the recommended 150 minutes of moderate-intensity exercise per week. In people with MS, this number is definitely lower, as research shows that activity in people with MS starts off low and declines over time.
EXERCISE HAS BEEN SHOWN TO INCREASE OVERALL DAILY ACTIVITY LEVEL, FUNCTIONAL CAPACITY AND BALANCE IN PEOPLE WITH MS. So, why don’t we exercise? As a person with MS, that is a pretty simple question to answer: Even though I know it will make me feel better, many times I feel so horrible or so fatigued that the thought of 30 minutes of sustained exercise just makes me laugh. Or cry.
19
NATIONALMSSOCIETY.ORG | 1-800-344-4867
A WAY INTO EXERCISE
However, there may be an answer, according to Robert W. Motl, PhD, in his presentation at ECTRIMS 2013, titled “Physical activity in MS: Theory, determinants and behavioral interventions.” Dr. Motl reminded the audience that it is not just people with MS who don’t stick to exercise programs. According to studies, over 50% of adults drop out of any formal exercise program after 3 months. And after 6 months, 75% have stopped exercising. He has some ideas on how to prevent this exercise attrition, however. Rather than pushing for a formal exercise therapy program, we should strive to incorporate more physical activity into our daily lives. Dr. Motl calls this “lifestyle activity,” and points out that intermittent exercise has been shown to have the same effect as “continuous bouts” of exercise. In other words, accumulating 30 minutes a day of moderate exertion doing things like walking, gardening or pushing a vacuum cleaner can be as effective as a more formal 30-minute exercise session. In addition to this new approach to getting our recommended daily allowance of exercise, Dr. Motl has been researching the effect of social cognitive theory, which relies on perceived selfefficacy. Simply put, a person will be much more likely to do something if they believe that they CAN do it. Putting this theory to the test, Dr. Motl’s research group tried it out on people with MS. After three months, the people who participated in the self-efficacy component
exercised more, exerted themselves more and reported feeling better than those in the group who did not receive the self-efficacy message.
MODELING HEALTH
I’m a huge fan of this new paradigm of incorporating exercise into daily life. After seeing the title of an article, “Is Sitting the New Smoking?” in a popular magazine, I bought a pedometer and now force myself to get at least 10,000 steps a day. Since a part of selfefficacy involves “modeling” or seeing others do the same thing, I monitor an online group of people who log their steps daily. In this way, I have made exercise a habit. I can tell you, I feel much better than I did when I would visit the gym for 3 days straight and then take a 6-month break. For those of you who may have limited mobility, you can still get the many benefits of exercise by exerting yourself to the extent possible to do your daily activities. Talk to your healthcare provider about what activities may work best for you. For more ideas on how to make exercise a part of your everyday life, visit www.nationalMSsociety.org/exercise. Julie Stachowiak, PhD, is an epidemiologist, author of The Multiple Sclerosis Manifesto, and a person living with MS. Originally published at www.MSconnection.org/blog.
20
MS CONNECTION: SPRING 2014
RESEARCH
NEW RESEARCH ON WELLNESS AND LIFESTYLE One of the National MS Society’s priorities is to drive research on wellness and lifestyle, where advancements could make a difference in the quality of life for people living with multiple sclerosis. These studies are also offering clues to risk factors that could help determine who is more likely to develop MS, which could lead to preventive strategies to end MS forever.
EXERCISE AND MEMORY
Aerobic exercise has been shown to increase the volume of an area of the brain associated with memory, called the hippocampus, so Victoria Leavitt, PhD, of the Kessler Foundation Research Center in West Orange, N.J., and her colleagues conducted a small pilot study to determine the effects of aerobic exercise on two people with MS who experienced memory impairment. One person was randomly assigned to an aerobic exercise program involving stationery cycling and the other was assigned to a non-aerobic exercise program of stretching. Each program consisted of three 30-minute sessions per week for 12 weeks. Before and after the program, MRI images were taken to assess the size of the hippocampus; functional MRI images were taken to assess real-time brain activity; and memory assessments were also conducted.
AEROBIC EXERCISE MAY HELP MEMORY. The researchers found that aerobic exercise resulted in a 16.5% increase in hippocampal volume, a 53.7% increase in memory and a significant increase in hippocampal activity. No significant changes occurred in the person doing nonaerobic exercise. (Neurocase, published online October 4, 2013) These preliminary results need further confirmation, but are in line with an emerging body of evidence showcasing the potential of exercise to provide broad benefits for people with MS. The Society is funding several studies exploring the potential benefits of exercise, including a trial of aerobic exercise as a strategy to treat cognitive dysfunction.
21
NATIONALMSSOCIETY.ORG | 1-800-344-4867
FATTY FISH AND MS
Fatty fish, such as herring, mackerel, tuna, salmon and trout, are a major source of vitamin D, which has been associated with decreased MS risk. Maria B채채rnhielm, PhD, and colleagues from the Karolinska Institutet in Stockholm studied whether fatty fish intake was associated with whether or not a person develops MS. They looked at a sample of 1,879 people with MS and 4,135 people without the disease; both groups had answered questionnaires as part of the Epidemiological Investigation of MS, a study comprising Swedish-speaking subjects between ages 16 and 70 from certain areas of Sweden. The team analyzed survey answers concerning fatty and/or lean fish intake, sun exposure and other factors, as well as blood samples to analyze vitamin D levels.They found that frequent fatty fish intake was associated with decreased occurrence of MS and that no significant association was found between intake of lean fish and MS. Among 1,178 people with MS and 1,410 without MS for whom blood samples were available, vitamin D levels were higher in those with high fatty fish intake. This work was supported by the Swedish Medical Research Council and other agencies. (Multiple Sclerosis Journal, published online October 24, 2013) This study adds to the growing body of research suggesting the possible benefits of vitamin D for people with MS and the role
of vitamin D in lowering risk of developing MS. A Society-funded clinical trial of vitamin D supplementation is ongoing in people with relapsing-remitting MS. Read more about vitamin D research at www. nationalMSsociety.org/vitaminD.
LOOKING AT LIFESTYLE
The Ausimmune Study, partly funded by the Society with the National Health and Medical Research Council of Australia and others, was launched to investigate whether increased exposure to sunlight and vitamin D may be protective against MS in people who had not yet been diagnosed with MS, but who had experienced a first neurologic episode that often leads to MS (called CIS, or clinically isolated syndrome). Anne-Louise Ponsonby, PhD (Murdoch Childrens Research Institute, Melbourne) and her colleagues used information from this unique study to research whether various lifestyle factors were associated with the development of CIS, including current and past tobacco, marijuana and alcohol use, physical activity patterns, blood pressure and body measurements. They found that risk of developing a CIS increased by 79% in people who had ever smoked, lending further evidence to the harmful effects of smoking in people with MS. None of the other factors in the study were associated with increases in risk. (Multiple Sclerosis Journal 2013;19:1717).
22
MS CONNECTION: SPRING 2014
MEMORIAL & TRIBUTES
The Central & Eastern Virginia Chapter would like to sincerely thank the generous contributors who made memorial and tribute gifts between November 2013 and January 2014. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.
MEMORIAL GIFTS Stanley Becouvarakis Mildred Lockwood Edgar Massenburg Theolise Rawles Joann Zacharchuk
Teresa Price Donna DeGroot Ann Gilley Carolyn Menke Dorothy Quesenberry Mary Cox
Richard Carlton Cathy Russell
Martha Stewart Mary Coon
Christine Ford Telford Eggleston
Paul Virkler William Carpenter
Robert F. Good Caroline Walters Eddie Ray Harris Margaret Kyle Douglas Hill Sally Lester Robert Ukrop Robert Patrick Kearney Anonymous Marie Ann Maddi Mary Hoge Anderson Richard G. Meyer Carol Haas-Reynolds Barbara Pitts Parker Thelma Mantlo
TRIBUTE GIFTS Alisha Alfano Joseph & Michele Alfano Charitable Fund Gary Patrick Ball Allan Mason Smith Kenisha Dickens-Goff Nancy Goff Karen Kolan Dyke Sandra Wiley Mark Ein Ajz Firestone Rebecca Fass Alice Parcell
Lisa Germano Patricia Doniger Karen Griffin Sandra Olszewski Leta Hand Higel John Bodkin Kia Clark Trout Patricia Clark
IF YOU WOULD LIKE TO MAKE A MEMORIAL OR TRIBUTE GIFT, PLEASE CONTACT THE CHAPTER AT 804-353-5008 OR VISIT MSVIRGINIA.ORG.
23
NATIONALMSSOCIETY.ORG | 1-800-344-4867
EDUCATION
KEEP S’MYELIN Keep S’myelin is a colorful, engaging, informative, and reassuring newsletter to help children and their parents talk and learn about MS together. Each issue is filled with stories, interviews, games, and activities that highlight a specific topic related to MS, as well as a special section just for parents. To receive your FREE subscription to Keep S’myelin, contact an MS Navigator by calling 1-800-344-4867. You and your family may also be interested in Digesting Science (http://www.youngms.org. uk/Home), an interactive website about MS designed specifically for children and teens.
AWARENESS
WORLD MS DAY
Thank you for all your support during MS Awareness Week; however, our job is not done!
WORLD MS DAY IS MAY 28TH
Let’s build on our momentum and get the word out. To give you some inspiration we’ve compiled a few examples of activities: • Raise Awareness & Educate: One of the key aims of World MS Day is to raise awareness of MS amongst the general public. You might consider hosting a World MS Day quiz, passing out flyers, or setting up a photo exhibition. • Fundraise: Walk, bike, swim, sing, knit, cook, read, dance – there are so many ways to fundraise and World MS Day is a great time to ask people to donate to a cause that’s close to your heart. • Get creative: You could paint a mural or record a song—use your imagination! Just remember to take lots of photos and share them with your networks. Visit http://www.worldmsday.org/wordpress for more information, as well as to download a toolkit to help you plan for World MS Day. Share your ideas with us on Facebook: MSCentralEasternVA
24
MS CONNECTION: SPRING 2014
VOLUNTEER SPOTLIGHT
PAM LOWERY
PAM LOWERY STARTED VOLUNTEERING WITH THE CHAPTER IN 1992 WHEN HER HUSBAND, BRUCE LOWERY, WAS DIAGNOSED WITH MS. PAM VOLUNTEERS AT BIKE MS EVENTS, CHAIRS THE FREDERICKSBURG WALK MS LEADERSHIP TEAM, ATTENDS LEGISLATIVE ACTION DAYS, AND SPEAKS AT WORKSHOPS FOR TEAM CAPTAINS. PAM HAS ALSO VOLUNTEERED HER TIME BY ATTENDING THE MS LEADERSHIP CONFERENCE AND SERVING AS A SELF-HELP GROUP LEADER.
A good friend of mine decided that he was going to ride in the 1992 Bike MS event. The next year, I decided that if he could ride, the least that I could do was to volunteer. Here was my opportunity to do something. I could lend a pair of hands, I could help with registration, I could help clean up at the end of the event, I could even help raise some money. While I couldn’t cure MS or fix Bruce, at least I was doing something. As I finished with my first set of responsibilities, I found a spot to watch the cyclists get on the road and I started bawling like a baby! As tears streamed down my face, a man walked over, put his arm around me and asked if I was OK. Stuttering and stammering, I replied: “My husband was diagnosed with MS just over a year ago. It’s overwhelming to see this many people getting ready to participate in this event. I feel as if every single one of them is doing this for US!” I thought that I was coming down to give support. The support that I came away with was immeasurable. It’s now 20 some years later. We’re still involved with the Bike MS event. The support that we get from the cyclists, the volunteers, and the staff is amazing. This group of folks has grown into a group that is like a family to us. Team BRUCE (Bikers Ride Until A Cure Exists) is committed to participating in Bike MS rides until there’s a cure. Eighteen months ago my older (and only) brother was diagnosed with MS at 60 years old. It saddens me, but now it hits me even closer. The knowledge and the advances in medicine will allow my brother to live a fairly normal life for the rest of his days is a testament to the work that has been done trying to find a cure over the past 25 years. When I am asked why do I volunteer: My heartfelt desire is to do whatever I can do to make life better for those who live with MS, to educate others about the disease, and to help raise funds for research and support. I will volunteer until there’s a cure….plus one more year where we’ll have a huge party to celebrate finding a cure for MS.
THERE ARE GOOD VOLUNTEERS AND THEN THERE ARE AWESOME VOLUNTEERS LIKE PAM! WE COULD NOT IMAGINE BIKE MS AND WALK MS WITHOUT HER.
25
NATIONALMSSOCIETY.ORG | 1-800-344-4867
MONEY MATTERS
WHERE TO FIND EMPLOYMENT HELP BY STEVEN W. NISSEN, MS, CRC
Are you considering changing jobs? Have you been out of the workforce, but are thinking about returning? Do you have questions about disclosure in the workplace or how to accommodate symptoms on the job?
CALL AN MS NAVIGATOR
An MS Navigator can address many of your employment-related questions and refer you to helpful resources, including employmentrelated publications and videos. Call the Society at 1-800-344-4867 and visit www. nationalMSsociety.org/employment.
JAN CAN HELP
The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy that can provide technical assistance and support regarding accommodations, the Americans with Disabilities Act, disclosure and selfemployment for people with disabilities. Contact JAN at 1-800-526-7234 or visit www. askJAN.org for a wide variety of resources and publications.
IN YOUR STATE
Each state has a vocational rehabilitation agency whose goal is to assist individuals with disabilities to gain and maintain employment. For a full listing of vocational rehabilitation agencies, visit askjan.org/cgi-win/TypeQuery.exe?902.
ONE-STOP SERVICES
The purpose of local one-stop employment centers is to assist job seekers, with or without disabilities, in finding employment. However, if you choose to self-identify that you are living with MS, the office may be able to provide some additional support services. To find your closest center, visit www.servicelocator.org.
TARGETED RECRUITMENT
Several online resources feature employers who are actively recruiting qualified people with disabilities, including: • Equal Opportunity Publications Career Center - www.eop.com/career.php. • GettingHired - www.gettinghired.com. • National Business & Disability Council www.viscardicenter.org/services/nbdc. Working with MS is possible and you don’t have to do it alone. Get connected to stay on top of your employment options. Steve W. Nissen, MS, CRC, is the National MS Society, National Capitol Chapter’s Senior Director of Employment & Community Programs.
26
MS CONNECTION: SPRING 2014
COMMUNITY CALENDAR
PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MULTIPLE SCLEROSIS SOCIETY. MULTIPLE SCLEROSIS EDUCATIONAL GROUP The Multiple Sclerosis Educational Group is your opportunity to exchange information and coping strategies and get the latest on MS research and treatment in a comfortable and confidential environment. This program is designed for MS patients, caregivers, and families. 4th Tuesday of the Month at 5:30 pm Neurosciences Conference Room Riverside Medical Office Building 12200 Warwick Blvd., Newport News, VA 23601 The group is offered by Riverside Center for Neurosciences and meets on an ongoing basis. For information call 757-875-7880.
CAN DO MULTIPLE SCLEROSIS WEBINARS Join Can Do MS live from the convenience of your home, at no charge, for an in-depth discussion on topics relating to exercise, nutrition, communication, symptom management and total health. May 13, 2014: 8:00 – 9:15 p.m.: Effective Parenting: Balancing Family and Multiple Sclerosis Being a parent can be the most rewarding adventure in life, but parenting comes with many unforeseen challenges. Join Clinical Psychologist Peggy Crawford, Nurse Practitioner Jennifer Smrtka and Occupational Therapist Laura Kingston in this webinar to learn how to best balance parenting while managing your MS. We will discuss how to navigate your MS symptoms while still enjoying and caring for your children. June 10, 2014: 8:00 – 9:15 p.m.: Tips for Traveling with Multiple Sclerosis The spring/summer travel season is fast approaching!! What are your plans? Do they include attending that family reunion, or dipping your toes in the surf and sand, or traveling to that “bucket list” location you have wanted to visit for so long? Maybe it is time to “get away from it all” with the family, or use up that vacation time from work? If so, now is the time to start planning To register visit www.mscando.org/multiple-sclerosis-programs/webinar-series/register or call 800-367-3101 x1281.
27
NATIONALMSSOCIETY.ORG | 1-800-344-4867
SELF HELP GROUP LISTING FOR MORE INFORMATION CONTACT 1-800-344-4867 UNLESS OTHERWISE NOTED. CENTRAL VIRGINIA Hanover Group
Fourth Thursday: 7-8:30 pm Church of the Redeemer 8275 Meadowbridge Rd. Mechanicsville, VA 23116 Leader: Dana 804-746-7481 Petersburg Day Group Second Thursday: 10-11:30 am River View-201 Epps St., Hopewell Leader: Melanie 804-526-9129 Petersburg Evening Group Third Thursday: 6-8 pm Southside Regional Hospital Third Floor Classroom Leader: Quennette 434-246-6007, 804-731-9069 Chesterfield Day Group Third Wednesday: 12-1 pm Johnston-Willis Hospital, Board Room Leader: Sheila 804-739-8488 Sharon 804-794-7589 South Hill Empowerment Group Third Wednesday: 5:30-7:30 pm Community Memorial Health Center 125 Buena Vista Circle Leader: Starr 434-378-2031 Richmond Day Group Second Monday: 10:15-11:30 am Tuckahoe YMCA: 9211 Patterson Ave. Leader: Barbara 804-747-0298 Richmond Weekend Group (Formerly Richmond Evening Group) Second Saturday: 11:30 am-1 pm HealthSouth Classroom 5700 Fitzhugh Ave. Leader: Lorenzo 804-921-9712 Richmond (VA Home) For those with advanced MS Every Monday: 11 am 1101 Hampton St. Leader: Judy 804-359-4093
Tappahannock Neurological Support Second Monday: 10:30 am (Call for Location) Leader: Margaret 804-472-4781 The Invincibles Third Tuesday: 7-8:30 pm HealthSouth Fredericksburg 300 Park Hill Drive Leader: Belinda 540-373-4377 Chronically Awesome For those living with MS, Lupus, Lyme and their caregivers/partners (Call for full list of Dates) First Wednesday: 6-8 pm Grace Episcopal Church 303 South Main St., Kilmarnock, VA Leader: Teri 804-436-4750
EASTERN VIRGINIA Chesapeake Group
Third Tuesday: 7 pm Lifestyle Fitness Center at Chesapeake Regional Medical Center 800 N. Battlefield Blvd., Chesapeake, VA Leader: Margie 757-633-4593 Suffolk Group Third Wednesday: 6:30 pm Magnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA Leader: Willie Ann 757-539-0139 Southside Group (Call for full list of Dates & Locations) Fourth Wednesday: 3 pm Meyera E. Oberndorf Central Library 4100 Virginia Beach Blvd., Va. Bch. Gloucester Group First Wednesday: 10:30 am Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA
African American Inspirational Group First Thursday: 11 am Hampton Public Library 936 Big Bethel Road, Hampton, VA Leader: D’Andre 757-660-3455, deejazzu44@aol.com Co-Leader: VeeGee 757-696-2540, veegee215@yahoo.com Peninsula Evening Group Second Thursday: 5:30 pm Sentara Careplex Hospital (York River Entrance, Conf. Rm. C) 3000 Coliseum Drive, Hampton, VA Leader: Diana (757) 358-0284
ADDITIONAL SUPPORT OPPORTUNITIES ON THE PHONE MSFriends: Peer Telephone Support 866-673-7436, 9 am–Midnight ET
CHAT ROOM & BOARDS MSWorld- www.msworld.org
ONLINE PEER CONNECTIONS MSConnectionwww.msconnection.org Connect with others on a discussion forum, join an online support group, or make a one on one peer connection via email (telephone support also available if needed). My Solutions- Facebook Support Group for Young Adults in their 20s & 30s in Chapter area To sign up, visit: http://bit.ly/ MySolutionsMS or contact at Jessica 804-591-3038.
National Multiple Sclerosis Society Central & Eastern Virginia Chapter 4200 Innslake Drive Suite 301 Glen Allen, VA 23060
Like Us: MSCentralEasternVA
Find us on Twitter: @MSCentralVA
CHAPTER STAFF
Ashley Chapman, Senior Manager, Statewide Advocacy: 804-591-3048 Michelle Derr, Vice President, Finance and Operations: 757-319-4251 Sherri Ellis, Chapter President: 804-591-3030 Tiffany Epley, Manager, Development: 804-591-3036 Matt Gregory, Associate, Customer Service & Data: 804-591-3041 Robyn M. Hirsch, Director, Communications & Marketing: 757-319-4252 Clare Lorio, Manager, Development: 804-591-3037 Karla McCarraher, Director, Development: 757-319-4253 Diana Oakley, Senior Manager, Accounting: 804-591-3042 Jessica Ramirez, Manager, Programs & Services: 804-591-3038 Deborah Richards, Associate, Revenue Accounting & Volunteer Engagement: 804.591.3034 Sharhonda Woods, Senior Director, Development 757-319-4254 Kathryn Zapach, Director, Programs & Services: 804-591-3039
PICTURED ABOVE: MATT GREGORY
WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.