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Quarterly Update

Summer 2016

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Accelerated Breakthroughs Change Lives

This spring, two promising treatments for progressive MS, ocrelizumab and ibudilast,  recently received special designations by the FDA to speed their potential approval. If approved, these treatments would mark a major step forward in realizing solutions for people living with progressive disease. Although these anticipated treatment breakthroughs are long overdue, we know that it has been catalyzed over the past several years by the generosity and commitment of supporters like you.    
 
With the Society’s successful completion of our $250 million NOW MS Research Campaign this past December, we have only just begun to realize the return of this groundbreaking investment on changing the lives of people with MS.
 
This year, the Society is embarking on a new and exciting plan to build on our success with NOW and accelerate vital breakthroughs for people with MS. Through this plan, we will remain steadfast in our commitment to research but expand our efforts to bolster effective advocacy, expand comprehensive life-changing services, deliver trusted information and resources, and strengthen community connections.  Working together, we will realize breakthrough solutions that can impact lives today and drive towards ending MS forever.
 
We believe that for people with MS to live their best lives, they must feel powerful, supported and connected by the very best National MS Society; a Society that can help people overcome the challenges of their disease today while instilling confidence in a world free of MS tomorrow.
 
The momentum we’ve built together over the past several years of the NOW Campaign is incredible. We’ve learned so much about what it takes to fuel this urgent work and through the recent input of donors, volunteers and people affected by MS, we are poised for exponential growth through our next campaign.
 
Right now we are in the early phases of building this campaign and I look forward to reporting more as I continue to seek your feedback on how together we can accelerate even more breakthroughs for people with MS. 

Yours truly,

Cyndi Zagieboylo, President & CEO

Cyndi Zagieboylo
President & CEO

Solutions for Today

People with MS need solutions to the everyday challenges of living with MS. As the Society continues to pursue research aimed at stopping MS, restoring lost function and ending MS forever, we are leveraging our knowledge to expand the information, resources, services and connections we offer to realize life-changing solutions for people with MS today. 
 
New Gift Expands Information, Programs, Training and Research to Support Wellness in MS
 


The Society’s new wellness plan leverages cutting-edge research, information, programs and advocacy to deliver comprehensive wellness solutions for living one’s best life with MS. This is welcome news for those living with MS who have already experienced that diet, exercise and mindfulness factor into how they live well with the disease. That includes Eric Hovde of Madison, WI, who through his family’s Hovde Foundation, recently contributed $250,000 to advance the Society’s wellness plan.
 
“To say that health, exercise and spirituality are part of how I approach MS is a major understatement,” said Eric, 51, who was diagnosed with relapsing-remitting MS in 1991 when numbness in his heel didn’t go away. He still contends with numbness as well as some pain, but to date his vision and mobility have been unaffected.
 
He attributes those outcomes to lifestyle, emphasizing that he leads an exceptionally healthy life. “Everybody has their addictions. My addiction is exercise and fitness,” he said.
 
Always one to enjoy sports and activities such as skiing, mountain climbing and the martial arts; Eric said he remembers asking his doctor if he could continue to work out when he was first diagnosed. He was told he could, but with care so as not to overly exert himself.
 
“I remember leaving the appointment and thinking it didn’t make sense to me. The healthier you can be, the better your body will be at coping with the disease,” said Eric.
 
He started exercising more, incorporated meditation into his daily routine, and began steering more toward a Mediterranean style diet that emphasized using less meat and dairy and more seafood, olive oil, whole grains and vegetables.
 
Eric is pleased to see the Society’s new focus on wellness, which will ensure that people with MS are empowered to live their best lives through diet, exercise and stress management.
 
Through the support of Eric and others, the Society has recently made substantial progress to expand the number of wellness solutions available to people with MS.  

 

Expanded Wellness Solutions
 
New Information and Resources:
The Society’s website continues to expand with up-to-date information and resources to support an individual’s personal wellness goals. New resources available include a Wellness Discussion Guide for People with MS and Their Healthcare Providers, a series of research-based papers covering topics such as diet, smoking and sleep disturbances in MS, and a Living Well with MS workbook series to support development of a personal wellness action plan.
 
New Program Collaboration:
Wellness is a life-long process that takes commitment, dedication and on-going support. In order to deliver the tools necessary to live one’s best life, the Society has partnered with Can Do MS to launch a wellness focused webinar and telelearning series covering topics on dimensions of wellness such as diet, exercise, sleep, emotional support and more. 
 
New Training for MS Healthcare Providers:
This past March, the Society hosted its inaugural Integrative Healthcare Meeting in Denver with Society-funded and Veterans Administration-funded MS clinical fellows from across the country. Young physicians, just beginning their MS careers, learned how lifestyle and complementary approaches can be effectively integrated with conventional medicine as part of a comprehensive MS care strategy designed to achieve quality of life and optimal wellness for people living with MS.
 
New Research:
MS presents many challenges to living one’s best life and among those challenges is depression, an often overlooked symptom caused by biological effects of the disease. The Society is eager to stimulate research in this area and through a recent grant, a large-scale clinical trial in Germany and the U.S. testing an online program to treat MS-related depression is moving forward. If proven effective, this program could be implemented immediately and be accessed by anyone living with MS depression.
 

In looking toward a cure for MS, Eric says he is “more hopeful and strongly positive today than ever,” adding that even if there isn’t a cure in five years, he believes it won’t be far off and there will be another round of medications that will significantly halt or slow the progression of MS.
 
“It’s up to everybody who has MS to take the best care of  themselves as possible so you can live as wonderful a life as possible,” he added. “The better care you take of yourself, the better position you will be to take advantage of the many research advancements on the horizon.”

Solutions for the Future

In order to stop MS in its tracks, restore what has been lost and ultimately end MS forever, the Society pursues all promising research paths and collaborates with investigators and key stakeholders worldwide to accelerate progress and realize future solutions for people with MS.
 
Alliance Meeting Inspires Hope for Fallon Wynne Way and Numerous Society Supporters

Fallon Wynne Way presents $210,550 gift to Society and Alliance leadership in San Francisco
Fallon Wynne Way presents $210,550 gift to Society and Alliance leadership in San Francisco
“Although answers to progressive MS didn’t come fast enough to benefit my mother,” says Fallon Wynne Way, whose mother Dee Wynne passed away in 2014, “I now have hope and confidence that we are closer than ever before to answers that will change the lives of everyone living with progressive MS today.”
 
Fallon, who is President and Chairman of the Yellow Rose Gala Foundation in Dallas, TX, was just one of nearly 60 supporters affected by MS that attended last month’s Second Scientific Congress of the International Progressive MS Alliance in San Francisco. During this pivotal two-day meeting, over 125 of the world’s leading MS experts convened to assess the challenges to progressive MS treatments and to chart a new course for speeding future solutions.
 
Led by the National MS Society and a host of other MS Societies across the globe, the International Progressive MS Alliance was formed in 2012 with the goal of speeding treatments to people living with progressive MS. For the first time ever, these countries are now pooling their talent and resources to drive collaboration and fund the most promising research on progressive MS, without regard for geographic borders.
 
“To know that the global MS community is now united in pursuing solutions for people with progressive MS, gives me great confidence to support this groundbreaking work,” said Fallon, whose foundation recently raised over $200,000 to support the Alliance through the Yellow Rose Gala Foundation, an influential charity event in Dallas founded by Fallon’s mother Dee that has raised millions for MS research over the years.
 
As with past Alliance meetings, the discussion and ideas stimulated in San Francisco combined with the generosity of Fallon and others who have committed their support, will focus the research community on the key questions facing progressive MS and will continue to drive treatment progress momentum. 
 
 
Antihistamine Shows Evidence of Stimulating Myelin Repair in Small Phase II Trial

Recent results from a small phase II clinical trial led by Dr. Ari Green, a Society-funded researcher from the University of California, San Francisco, showed that the oral antihistamine, clemastine, modestly improved the transmission of electrical signals in the optic nerve in participants with MS who had optic nerve damage. The improved transmission indicates that nerve-insulating myelin was repaired along the nerve pathways.
Clemastine was identified as having possible myelin-repairing properties through innovative research conducted by National MS Society-funded researcher Jonah Chan, PhD, who went on to become the first recipient of the Barancik Prize for Innovation in MS Research for this pioneering work.
Doses of the antihistamine in this trial exceeded the maximum recommended for over-the-counter use. Clemastine affects a range of targets in the body, and involves the risk for side effects such as extreme fatigue, particularly at increased dosages.
This team is planning an additional trial to further determine the safety and effectiveness of clemastine, as well as studies to develop modified versions of clemastine that may enhance myelin repair and cause fewer side effects.
To learn more about the clemastine trial and other exciting research findings reported at April’s American Academy of Neurology Meeting in Vancouver, BC, visit the Research News feed on the Society’s website.


Society Commits Over $25 Million in Recent Research Investments
 
Thanks to the generous support of donors like you, the Society recently committed over $25 million to support an expected 60 new MS research projects.  This financial commitment is the latest in the Society’s relentless research efforts to move us closer to a world free of MS, and part of a projected investment of $52 million in 2016 alone to support more than 380 new and ongoing studies around the world.  
 

See Your Investment in Action

Witness how the Society works to shape the MS research landscape by participating in the Society’s next Research Programs Advisory Committee Meeting (RPAC) taking place June 23-24 in Washington, D.C.  
Contact Heather Lee at heather.lee@nmss.org or 303-698-6140 to learn more about this opportunity. 

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