M OV I N G TO WA R D A W O R L D F R E E O F M S
FA L L 2 0 1 2
Rookie Teams Rocking Walk MS In 2012, Walk MS had an explosion in participation of first time teams! The top five BRAND new teams raised a combined $24,000! Congratulations to ALL of our Rookie Teams! Our Top Five ROOKIE teams are below: Mosley’s Maniacs Christy Darrington, Team Captain 34 registered team members $6,830 raised Walk MS Little Rock
Sarah Smile Sarah Matthews & Sarah Cunningham, Team Captains 50 registered team members $4,009 raised Walk MS Little Rock
Team Woody Nick Morgan, Team Captain 19 registered team members $2,700 raised Walk MS Northwest Arkansas
Mighty Monty Jennifer Bohanan, Team Captain 20 registered team members $5,975 raised Walk MS Little Rock Team Hoot Holly Vinson, Team Captain 40 registered team members $4,465 raised Walk MS Jonesboro
Welcome New Staff PAGE 4
2013 Scholarships Available PAGE 5
Share Your Story PAGE 6
Society’s New Research & Training Projects PAGE 9
Continued page 3
THE MSCONNECTION is published by the National Multiple Sclerosis Society, Arkansas, 1100 N. University, Suite 255, Little Rock, AR 72207.
Vice President’s Impressions
Little Rock Office 501-663-8104 Outside Little Rock 800-344-4867 Little Rock Fax 501-666-4355 Arkansas E-mail staff’s first name.last email@example.com Website www.msarkansas.org
Dear Members, We have just finished up our great Bike MS ride from Little Rock to Hot Springs. I want to thank every volunteer, participant, sponsor, and everyone in Arkansas who are helping to create a world free from MS.
Vice President of Development • Ray Mack
Arkansas had a fantastic Walk MS season and a great Bike MS event and the success is due to everyone. We cannot achieve this task on our own.
Development Manager • Lisa Finkbeiner Programs & Services Manager • Brooke Smith Programs & Services Coordinator • Jessica Fisher Strategic Philanthropy Coordinator: • Tina Ward Newsletter Editor • Brandi Davidson Moore 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 Multiple Sclerosis 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. ©2012 National Multiple Sclerosis Society, Arkansas
We all know that when you have MS you are not alone in living with the disease. You have an entire network of friends, family, co-workers, Society staff, and a world of researchers working with you to help you live with your diagnosis. I am very excited about the funding we have been able to provide toward research to find a cure and to support those currently living with MS. The Society has developed a phenomenal network of experts to assist you from diagnosis to daily living with MS. I am honored to work side by side with each and every one of you. If I can help anyone of you please do not hesitate to reach out to me. Reach me by phone 918-284-7851 or email firstname.lastname@example.org. Sincerely,
2 I JOIN THE MOVEMENT: nationalMSsociety.org
From Page 1
Team Mosley’s Maniacs
Team Sarah Smile
Nominees for Board of Trustees Now Being Accepted Individuals interested in being considered for nomination to the Board of Trustees should submit a letter of interest and a biography, along with full name, mailing address, email address and phone number. Nominees will be notified of board member expectations, responsibilities, and fiduciary and time commitments. Final candidates will be
interviewed by a member of the Governance Committee. Nominations for the Board of Trustees must be submitted by Nov. 15, 2012 to: Mark Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054
Offices Closed for Upcoming Holidays National MS Society offices will be closed on the following days: • Thanksgiving: Wednesday, Nov. 21 (half-day closure); Thursday, Nov. 22; and Friday, Nov. 23
• Christmas: Friday, Dec. 21 (half-day closure); Monday, Dec. 24; and Tuesday, Dec. 25
• New Year: Monday, Dec. 31; Tuesday, Jan. 1
TOLL FREE NUMBER 1 800 344 4867
Welcome New Staff – Tina Ward
• Tina Ward joined the Society as the Strategic Philanthropy Coordinator on August 20. She will work out of her home in Berryville, Ark. • She previously worked for the Nelson Funeral Service in Berryville as the Pre-Arrangement Counselor, and before that she was the Director of the Dr. Dan J. Hawkins Community Health Resource Center in Harrison, Ark. • Tina graduated from John Brown University in Siloam Springs in 2004 with a Bachelor’s degree in Organizational Management, and completed her Master of Arts degree in teaching at the University of Arkansas at Monticello in 2012.
• She is married to Carl Ward of Berryville and they have two beautiful daughters, Carley Grace, 4 years old, and Taylor Faith, 3 years old. • “I have always enjoyed working with and helping people. I participated in the Bike MS ride in 2004 as a way to help raise money for the Society. Ironically, in 2005, I was diagnosed with relapsing-remitting MS. I was able to experience first-hand the education, generosity and kindness that the National MS Society has to offer. I have been and will forever be dedicated to the Society for what they have done for me and for so many others. As the Strategic Philanthropy Coordinator, I will be able to share my story and help move the mission of the Society forward, knowing that I am making a difference in the lives of those that live with MS and their loved ones.”
Celebrate Your Caregiver! November is National Family Caregiver Month The National MS Society supports the National Family Caregivers Association (NFCA) in their efforts to recognize family caregivers through our endorsement and recognition of November as National Family Caregivers (NFC) Month. This is a nationally recognized time set aside every year to thank, support, educate and celebrate more than 50 million family caregivers across the country! Many families and individuals are caregivers to a loved one. These caregivers can be sons, daughters, parents, spouse, siblings, other relatives or even a friend of the person needing 4 I JOIN THE MOVEMENT: nationalMSsociety.org
assistance. According to the NFCA, the service provided by Family Caregivers represents 80% of all home care services, which is conservatively valued at $375 billion a year. The National MS Society knows that being a caregiver is a huge responsibility that comes with joy, frustration as well as sacrifices and we want to give something back to caregivers who have given so much, and given up so much to support others. Stay tuned for more details on how we can help you recognize your caregiver during the month of November!
2013 Scholarship Applications Available Online
The National MS Society offers a scholarship program for students living with multiple sclerosis or who have a parent living with MS. Applicants must be planning to attend an accredited post-secondary school for the first time and to take at least six credit hours per semester leading to a degree, license or certificate.
is no application fee for Society scholarships. Completed applications and supporting materials must be submitted by mid-January 2013.
Each recipient is selected based on financial need, academic performance, compelling personal or family circumstances, and an applicant’s essay on the impact of MS on his or her life.
The Society’s website also has information on additional scholarship opportunities, including federal assistance and other financial aid resources.
Awards range from $1,000 to $3,000 for one year. A small number of four-year awards are also offered.
In 2012, the National MS Society, South Central Region awarded 48 new scholarships, six of which went to graduating students in Arkansas. In addition to the new awards given; 75 scholarship renewals were also awarded for a total of $185,500.
Starting Oct. 1, 2012, scholarship applications for 2013 are available on the Society’s website. There
For guidelines and applications, visit nationalMSsociety.org/scholarship or call the Society toll-free at 1-800-344-4867 (press 1).
TOLL FREE NUMBER 1 800 344 4867
Share Your Story
Every individual touched by MS has a distinct and powerful story. It doesn’t matter whether you are a person living with multiple sclerosis, a family member, a friend, or a volunteer. Your
story is valuable for sharing with legislators, health professionals and the media so they are educated about what it’s like to live with MS.
Debora Ray North Little Rock, Arkansas 13 Years Living With MS
This is my story… Sample Story Card
To share your story or learn more about MS Activism, contact Jessica Fisher at Jessica.Fisher@nmss.org or call 501-663-8104, ext. 35302.
I am lucky because physically I am doing well. My symptoms include vision issues, fatigue, and some depression, and they have all been manageble. I had an exacerbation after the birth of my daughter, but since then have been ok. I’ve had some challenges in the past with insurance coverage. I’ve been denied several times because of the pre-existing condition clause, even though I had continuation of coverage. Every time I switched companies I would have to go through the appeals process, which was exhausting. I once had to leave a job when the insurance company changed its prescription drug coverage. The increase in cost of my medication became so substantial that it was unreasonable for me to continue working there. Now I have good coverage through my job. The out of pocket cost for family insurance is about $4000 per year. I meet my deductible in the first two months of the year due to the high cost of my medications, and we are able to budget for it. I believe medical research funding is critical so that new treatments can continue to be developed, and so hopefully one day there will be a cure. Lifespan respite care is also on my mind. I worry about what the future will bring for me. I don’t want my husband or my daughter to struggle with the burden of caring for me if my MS causes problems later in life. I am an MS Activist because I want to do something about MS now, for my family and for all Arkansans living with this chronic illness.
JOIN THE MOVEMENT msarkansas.org • 501-663-8104
6 I JOIN THE MOVEMENT: nationalMSsociety.org
Ways to Join the Movement
Advocacy Days, Bike MS, Walk MS, Dinner of Champions, and more. Volunteers and activists are always rallying together to Join the Movement for MS and propel the vision and mission of the Society. Here are simple ways you can spread the word and join the movement any day of the year:
1. 2. 3. 4. 5.
6. 7. 8. 9. 10.
Learn about a new research update and tell someone about it. Blog about MS or your involvement with the Arkansas Office. Insert an MS logo or photo as your Facebook profile picture. Email five people about ways to Join the Movement. Attend a program, teletraining or self-help group and learn something new about MS. Speak to a group in your community about MS, such as a rotary club. Host an informational table at your workplace. Share your story about how MS has affected your life with your state elected officials. Put a National MS Society sticker on your car or window. Write a letter to the editor of your local newspaper about MS.
If youâ€™d like to talk about more ideas you have in Joining the Movement, let us know! Contact Jessica Fisher at Jessica.Fisher@nmss.org or 501-663-8104.
On the Road Again, Thanks to Your Support Dear National MS Society and all of those who support the Society, I want to send a heart-felt thank you for the financial assistance you provided me last year. Because of your generosity, I was able to install hand controls in my vehicle. Your assistance has greatly improved my life! Due to MS, I had not been able to drive since December 2009. I live alone, and felt very isolated and dependent upon others to provide the things I need and, of course, for transportation. Unable to work and having limited resources, the prospect of being able to install hand controls and become more independent seemed unlikely. When I learned of possible assistance through the National MS Society, I regained hope and made a
phone call. Everyone was so nice, and the process went so smoothly, quickly and efficiently. I would especially like to thank Marcia Stephens, Information Resource Specialist, and Jessica Fisher, Coordinator of Programs and Services. Both were extremely knowledgeable and helpful. Within a very short timeframe, my vendor was paid, the controls were installed and I began to drive again! I have regained some independence and it has made a significant difference in my quality of life. Thank you so very much for your assistance. I am very grateful to the National MS Society and all they do, and so appreciate the contributions made by so many. With gratitude and appreciation, Kim Dixon
TOLL FREE NUMBER 1 800 344 4867
Self-Help Groups & Leaders Batesville Area Looking for a co-leader!! Jamie 870-834-3604
Greater Little Rock Area Stuart 501-835-6776 Merten 501-223-8427
Rogers Area Susie 479-633-6694 Sandra 479-685-4383
Conway Area Leah Mohlke 501-450-0489
Northeast Arkansas Susan 870-239-2561
Springdale Area Jan & Hilde 479-445-6776
Hot Springs Area Charles & Theresa 501-624-6033
Pine Bluff Area MyKenya 870-592-0055
Van Buren Area Byna 479-650-6415 Doug 479-462-9024
8 I JOIN THE MOVEMENT: nationalMSsociety.org
Society Launches $18.4 Million in New Research and Training Projects In July, the National Multiple Sclerosis Society committed up to $18.4 million to support 52 new MS research projects and training fellowships as part of its comprehensive strategy to stop MS in its tracks, restore function that has been lost and end the disease forever. This financial commitment is the latest in the Society’s relentless research effort to move closer to a world free of MS.
on expert advisory committees that include more than 70 world-class scientists who volunteer their time to carefully evaluate hundreds of proposals every year. The new research projects include: • explorations of what causes people with MS to experience pain; • a DNA bank to aid researchers investigating the genes that make people susceptible to MS; • new approaches to promoting nervous system repair; and • fellowships to train promising young doctors and scientists in MS research and clinical care.
The National MS Society’s long-standing investments in basic and translational research have resulted in new treatments and better methods of diagnosis and disease management for people with multiple sclerosis. The Society continues to pursue all promising paths that lead to solutions for everyone affected by MS. To ensure the scientific merit of each research proposal selected, the National MS Society relies
These new projects add substantially to the research goals outlined in the Society’s Strategic Response to MS. There are FDA-approved therapies that can impact the underlying disease course in people with the more common forms of MS. However, none of these can stop progression or reverse the damage to restore function. The National MS Society-funded research helped lead to the development of many of these therapies and continues to be a driving force of MS research.
TOLL FREE NUMBER 1 800 344 4867
Clinical Trial Shows Promise for New Therapy for Relapsing MS
In a clinical trial involving 1,169 people with relapsing-remitting multiple sclerosis, oral teriflunomide reduced relapses compared with placebo over at least 48 weeks. Of two different doses tested, the higher dose also slowed progression of disability. This is the third completed of five phase III studies involving teriflunomide in multiple sclerosis. An application
for marketing approval of teriflunomide was accepted for review by the U.S. Food and Drug Administration last fall. These and results from additional studies should help define the short-term safety and promise of teriflunomide as a potential new therapy for relapsing MS.
New MS Drug Application Filed for FDA Review In June, Genzyme announced that it had submitted a new drug application to the FDA for approval to market alemtuzumab – under the proposed name Lemtrada – for treatment of relapsing MS. The application was based on positive results from several clinical trials involving people with relapsing-remitting MS. Alemtuzumab is given by a cycle of IV infusions only once per year. The FDA
review process generally takes from 6 to 10 months. “People with MS need more treatment options. If the FDA agrees to file this application and its review finds alemtuzumab to be safe and effective, it would represent a significant new treatment advance,” said Dr. Timothy Coetzee, Chief Research Officer of the National MS Society.
Botox Research Moves to Reduce Arm Tremors Botox significantly reduced arm tremor, and a new strategy to address this common and improved arm and fine hand movements and disabling symptom of MS, which is often resistant function, in a small study of people with MS. If to treatment. confirmed in a larger study, this research may yield
Italian Study Finds Therapies Reduce Risk of Disease Progression Researchers who studied outcomes for 1,178 people with multiple sclerosis from three MS centers in Italy have concluded that using diseasemodifying therapies significantly reduced the risk of progressing from relapsing-remitting to secondary-progressive MS. This study adds to the body of evidence suggesting that MS therapies 10 I JOIN THE MOVEMENT: nationalMSsociety.org
improve future outcomes for people with MS, having a positive effect not only on inflammation but also on the damage to nerve tissues that causes progression of disability over time. The study requires further confirmation, but it indicates the value of pursuing every novel avenue to answer questions posed by MS.
Protein May Hold Key to Immune Attacks According to a new study published in The New England Journal of Medicine, researchers have identified a protein that may be a target of the immune attack in some people with MS. An immune response to this protein – called KIR4.1, which is found on several types of brain cells – was observed in the serum of 47 percent of people with MS who were tested. Further research is
needed to confirm these findings, and to fully understand what the role of this protein may play in MS and its potential for developing new treatments. This international study was supported by grants from the German Ministry for Education and Research and the National MS Society, among others.
Scientists Probe Effects of Stress Management on MS Activity In a recent study, a 24-week stress management program reduced disease activity on MRI scans significantly more than in a control group. However, the benefits seemed to disappear after the weekly in-person stress management sessions were completed. Future studies should provide more clarity for optimizing the potential benefits of stress management in people with multiple sclerosis. The authors are continuing to examine these results. They also suggest that the use of telephone, Internet and mobile phone interventions may help sustain the results of stress management programs after the program stops,
since long-term standard behavioral intervention can be burdensome for patients who must make weekly office visits. Christoph Heesen, M.D., and Stefan Gold, Ph.D., with the University Medical Center Eppendorf in Hamburg, Germany, noted that this study may provide the first direct evidence “for a causal link between stress and inflammatory activity in these patients.” They also suggested that the study shows that science needs to be more mindful of “a biopsychosocial model of disease.” This model acknowledges that biological and psychological factors contribute to diseases such as MS.
Immune B Cells May Harm Myelin-Making Cells Researchers have found evidence that immune cells known as B cells from people with MS may produce toxic factors that harm brain cells, in particular, cells that make myelin, the key substance needed for nerve transmission. If these factors can be identified and confirmed to play a
role in MS disease progression, it may serve as an important target for developing new MS therapies. In the future, it may also become possible to stimulate B cells to turn off the production of this toxic factor in people with MS.
TOLL FREE NUMBER 1 800 344 4867
National Multiple Sclerosis Society 1100 N. University, Suite 255 Little Rock, AR 72207 POSTAL CARRIER – DATED MATERIAL PLEASE DO NOT DELAY