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Spring 2015

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Society Takes Aim at Comprehensive Wellness Solutions

The National Multiple Sclerosis Society knows that people with MS are seeking to live their best lives and want more and better information – particularly in the areas of diet, exercise and mood – to guide proactive wellness choices. Understanding and addressing gaps in wellness research and using this newfound knowledge to inform life-changing solutions is a Society priority.

To advance this critical work the Society recently convened nearly 60 MS research experts, wellness experts and people living with MS at a meeting to review the current evidence around diet, exercise and mood interventions in MS. Attendees identified gaps in knowledge and considered what next steps the Society might take in advancing comprehensive wellness solutions.

In sifting through the vast and complex array of current wellness information ranging from fact and opinion to personal experience and scientific literature, attendees noted trends and research in the area of diet that may link MS to obesity, sodium, gut bacteria, polyunsaturated fats and vitamin D. It was determined that most studies were insufficient and lacked proper design to provide conclusive results. 

Research into the area of exercise appeared promising – serving as an effective strategy for improving aerobic capacity and muscle strength, mobility, quality of life, and symptoms of fatigue and depression in MS. However, the efficacy or effectiveness of any specific exercise program for people with MS has not been established and was therefore noted as a gap. 

Mood disorders such as stress, depression and anxiety are often underdiagnosed and untreated in people living with MS, but are well documented in the general population as impacting quality of life. For people living with MS, mood disorders can present an even greater challenge to living well and with little research on the known impact, attendees called for immediate attention to this area.

With this understanding, attendees identified many of the research challenges to address in order to uncover answers that will inform wellness programming and other life-changing solutions. These challenges ranged from proper study design and participant adherence, to a lack of investigators focused on wellness research and the high cost of large-scale clinical trials necessary to produce conclusive results.

After careful consideration of the identified research challenges, meeting attendees made recommendations to the Society on how to move forward with a comprehensive and collaborative wellness research strategy, along with specific recommendations on a corresponding wellness programming approach to implement over the coming months.

Through continued strategic focus, the Society looks forward to driving research and programming to deliver important wellness solutions in the areas of diet, exercise and mood that will help people with MS live their best lives.

A white paper providing more detail on the meeting outcomes can be found on the Society’s website. To stay informed of the progress of the Society’s wellness initiative, check our website for regular updates and connect with your chapter on upcoming engagement opportunities. 

 

Solutions for Today

I often hear from people affected by MS that they are grateful for the significant research progress the Society is fueling through our continued investments. With 12 disease-modifying treatments on the market and several more in the pipeline, along with an international Alliance focused on advancing treatments for progressive MS, people are hopeful about what breakthrough solutions the future may bring.

While we are optimistic about prospects for advances, the urgency for immediate solutions remains. People are wondering what they can do today to live their best lives as we invest in research for the future. Is there a specific diet for MS? What kind of exercise is best for my MS? How do I balance work, family and my health while keeping stress levels in check? How can I get motivated to take action when I just don’t feel well?  It is essential that the Society help people find the solutions they need. As a result of what we’ve heard from so many, we are making wellness a priority.

This wellness initiative will require that we adopt new ways of thinking about research and programming. We must be able to translate knowledge into action so that people can make informed lifestyle choices and are empowered to live their best lives.

During this final year of our historic NOW Campaign for MS research, your continued support will be essential to ensuring we are able to respond to the urgent needs of people with MS and deliver solutions that will change lives today as we continue to seek solutions for the future.

Yours truly,

 

Current Wellness Research

Did you know the Society is currently investing more than $24 million to support 78 research projects focused on advancing wellness solutions for people with MS? Here’s a look at a couple of the questions being addressed in this body of research:

  • What are the best wellness solutions for people with MS?
    With a new Collaborative MS Research Award, a team assembled by Dennis Bourdette, MD, at Oregon Health & Science University, will conduct preliminary tests of a specific diet and an aerobic exercise regimen in people with MS, laying the groundwork for larger studies that will provide people with MS with wellness approaches that are based on rigorous research.
  • Can a high salt diet contribute to the development and severity of MS?
    David Hafler, MD from Yale University is investigating the possibility that high levels of salt in one’s diet may help trigger or exacerbate MS immune attacks. This could lead to dietary recommendations to help alleviate some of the problems caused by MS.
  • Can aerobic exercise improve cognitive impairment in people with MS?
    Charles Bombardier, PhD from the University of Washington in Seattle is leading a clinical trial to test whether aerobic exercise or stretching and toning can improve thinking speed in people with MS. Results from this study could add important evidence for a non-pharmaceutical approach to improving cognitive abilities in people with MS.

Experts Discuss Advances in Progressive MS Research

On March 4th the Society held its latest live webcast “Finding Answers to Progressive MS” featuring a panel of MS research experts including the Society’s Executive Vice President of Research, Dr. Bruce Bebo, Dr. Alan Thompson from University College London who is Chair of the Progressive MS Alliance Scientific Steering Committee, Dr. Robert Fox from the Cleveland Clinic who is also a member of the Alliance Scientific Steering Committee, and MS physician and researcher Dr. Riley Bove from Harvard.

The lively discussion highlighted the research and collaborations the Society is helping to lead worldwide to find answers to the questions that have hindered progress in this area. The Society is working urgently and relentlessly to find answers to speed treatment development and effective symptom management and rehabilitation strategies to stop disease progression and restore lost function to those living with progressive MS.

If you missed the discussion on March 4th, visit the Society’s website to watch a recording of the webcast.

Philip L. De Jager, MD, PhD, Neurologist at Brigham and Women’s Hospital and Associate Professor of Neurology at Harvard Medical School, is the 2014 recipient of the Barancik Prize for Innovation in MS Research, an international award established in 2013 to drive progress in multiple sclerosis research. Dr. De Jager, a clinician and a researcher, was selected for his work in applying powerful analytic approaches to better understand how genes and the environment interact with the goal of developing personalized treatments for MS and, ultimately, disease prevention.

Dr. De Jager is a founding member of the International MS Genetics Consortium (IMSGC) and has played a key role in nearly every major gene discovery and advancement over the past decade. Dr. De Jager led the meta-analysis of genome scans that the Consortium published in 2009, which was one of the first instances in which this powerful analytic approach was deployed for any human disease. This work has culminated in the creation of the new MS Genomic Map that will be released in 2015 by the IMSGC.

He is continuing his work through the International MS Genetics Consortium to create a definitive genetic map of MS susceptibility. He, and colleagues worldwide, is using this map to understand the functional consequences of MS genetic risk factors to create potential personalized approaches to predict, treat and ultimately prevent MS.

Dr. De Jager has implemented several novel resources for the MS community, including the PhenoGenetic project with over 1,800 healthy individuals and the Genes & Environment in MS (GEMS) project that recruited over 3,000 MS family members in the last three years. These and other long-term studies will attempt to answer questions that people affected by MS need to know, including why some people develop MS and others don’t, why certain people respond differently to medications and treatments, and why some people’s MS progresses faster than others.

“Overall, I see two compelling and complementary projects,” Dr. De Jager explained. “First is to understand a person’s trajectory from not having MS to their diagnosis. Here, identifying a treatment for the prevention of MS is a key goal of our studies, but it requires a complementary approach to identify the individuals at highest risk of developing the disease since most family members do not develop MS.” Dr. De Jager added, “The second project is to gather enough data on a single, large set of MS patients to set the stage for an impactful discovery effort to understand MS-related neurodegeneration.” For this effort, he has creatively used technology to enhance patient engagement through the use of patient-powered web platforms, electronic health records and smartphone-based tools to better characterize MS participants in these studies.

“We’re thrilled to present the 2014 Barancik Prize to Dr. De Jager for his visionary approach towards understanding the genetic architecture of MS,” said Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer at the National MS Society. “Dr. De Jager has leveraged his deep understanding of the clinical context of MS with his background in molecular genetics and immunology, to design new ways of approaching and answering challenging MS questions.

” Through Dr. De Jager’s innovative analytical approach to genetics research, he is committed to pursuing critical questions that will change the face of MS clinical care and lead us closer to ending MS.

To preview a video on Dr. De Jager, please visit the Society’s website.

An Environmental Approach to Wellness

Dr. Ellen Mowry

Dr. Ellen Mowry, MD, is an Assistant Professor of Neurology at Johns Hopkins University and has received several grants from the Society to pursue research into wellness solutions, including a current large scale trial investigating the effects of Vitamin D supplementation on MS disease activity. Dr. Mowry is one of the volunteer leaders of the Society’s wellness initiative. . Dr. Mowry was also recently selected to receive the Society’ prestigious Harry Weaver Neuroscience Scholar Award and plans to use the funds from this award to study the impact of intermittent calorie restriction in MS.
 
Dr. Mowry, your research to date had focused a lot on Vitamin D. Can you tell us why this topic is of interest to you and what questions you hope to answer through your current trial?
 
At the time that I started doing work on vitamin D, we knew that it was a risk factor for developing MS but it wasn’t clear if it was important for folks who already had the disease. Over the last few years I’ve been able to show that people with MS who have lower levels of vitamin D do seem to have more attacks, more white spots and more loss of brain tissue but this doesn’t necessarily mean that vitamin D supplementation can take those things away. My current project is looking to see if vitamin D will actually help with disease activity and not do any unintended harm.
 
It seems that increasing investigation into vitamin D, diet and other environmental factors that impact wellness are drawing more attention recently. What do you think has caused this shift?
 
I think that our patients are definitely a big prompter of that shift, wanting more proactive ways to improve their MS. But I also think part of the reason is that when we look at the increasing incidence of MS over the past several decades, we know that it’s probably happening too fast to be accounted for by our genetics alone.  And so vitamin supplements, diet, exercise – things I consider environmental – are probably big contributors to these increased incidents of MS and some of these things are modifiable. That’s why I think there is more interest in identifying those factors so we can change them and see if that affects outcomes.
 
What is the research behind other environmental factors that people with MS should take into account when making choices on their personal wellness?
 
Cigarette smoking has been identified as a risk factor for MS so I council my patients to stop smoking. Smoking is a big no no for MS both in terms of getting the disease and also how the disease progresses. Another emerging factor seems to be obesity – particularly in children and adolescents - showing that being obese is likely a risk factor for getting MS. So that's another really important area I think that we can all focus on – a healthier lifestyle, preventing childhood obesity and therefore potentially impacting the risk of MS. There's more research on exercise as well and I personally think exercise is great because we know that it's good for your overall health and certainly it's known to reduce stress levels which most folks with MS feel greatly influence the disease, so that's great.
 
How do you think increased research into environmental factors will change the way you care for patients today and in the future?
 
I really like the idea of providing people with ways that they can take charge of the disease themselves. If I say, “Take this medication,” certainly you know that person have to do it if they want to have an impact on the disease. But if I say, “We also have really good evidence that if you eat, a diet with X,Y and Z components and get 30 minutes of exercise a day, you could really change your disease.” That’s kind of cool too, because I think that empowers the person to make their own modifications and really be the master of their own disease, which I love.

The Power of a Gift

Dave Power (center), founder of J.D. Power and Associates, along with his children (left to right) Jonathan, Mary, Susan and Jamey.

This fall, the Kenrose Kitchen Table Foundation granted its record-breaking gift of $1,625,000 to the National Multiple Sclerosis Society in support of MS research and the Southern California & Nevada Chapter’s mental health programming.  The gift was made in honor and memory of the Power family’s mother, Julie, who lived with multiple sclerosis for 24 years.
 
Dave Power, founder of J.D. Power and Associates, along with his children Jamey, Mary, Jonathan and Susan, created the Kenrose Kitchen Table Foundation in 2005. True to their family’s entrepreneurial drive and focus on innovation, the mission of the Kenrose Kitchen Table Foundation identifies and supports unconventional solutions to today’s problems and invests in innovative solutions and ways of thinking that bring breakthroughs in medical research.  
 
“Our ‘investment’ in the National MS Society provides our family with great pleasure and hope. The innovations in MS research, the strong collaboration among researchers, scientists, and industry, and the overall leadership provided by the Society is extraordinary. We know that we are on the offensive in fighting this disease. And, momentum is building,” shared Jamey Power, Trustee for the Society’s Southern California & Nevada Chapter, as well as a member of the NOW Cabinet for research fundraising.
 
Inducted into the National Multiple Sclerosis Society Circle of Distinction in 2010 for outright giving exceeding $1,000,000, the Kenrose Kitchen Table Foundation has since contributed millions of dollars to accelerate MS research. This phenomenal grant highlights the family’s continued commitment to the cause, care and cure of multiple sclerosis.
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