Spring 2014 - National Multiple Sclerosis Society

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NOW Quarterly Update

Spring 2014

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New Leads in Understanding and Treating MS

Your generous support is fueling new leads to stop MS in its tracks, restore function, and end MS forever. National MS Society research investments over the last year drove results that will change the course of MS research, increasing the speed at which we can find solutions for people affected by MS. We now have a better idea of what causes MS damage and progression, understand more than ever the benefits of early and ongoing treatment, and know more about what factors influence the body’s brain repair mechanisms. 

Stopping MS:

  • The Society joined with National Institutes of Health to launch a therapy trial of the re-purposed therapy ibudilast in primary-progressive and secondary-progressive MS with potential to protect the nervous system from increased damage. 
  • Dietary salt may trigger MS activity, according to studies supported by the National MS Society and others. The Society has recently invested in additional research to follow up this lead.
  • A large meeting of the National MS Society-launched MS Outcome Assessments Consortium and the FDA cleared a pathway for a new tool for improving and speeding clinical trials which will result in an increased number of therapies available for people with MS.

Restoring What’s Been Lost:

  • Two studies in the U.S. and Italy showed the potential of stem cells derived from the skin for growing new myelin and for reducing nervous system damage.
  • The first Barancik Prize winner  innovated technology to search on–the-shelf drugs for myelin repair potential; a clinical trial is now starting based on a currently approved drug uncovered by this system.
  • The Society invested in several new commercial therapy development programs through Fast Forward, focusing on novel therapies to protect the nervous system from MS damage and/or stimulate myelin repair

Ending MS Forever:

  • With funding from the National MS Society and others, a global consortium identified 48 new MS risk genes that better define the biological pathways leading to MS and may ultimately lead to ways to prevent the disease and enhance the design of better treatments.
  • The Society launched new research funding totaling $2.5 million for an expanded Network of Pediatric MS Centers and data coordination hub, which can be leveraged to answer important research questions to advance our understanding of the disease in both children and adults with MS.

As we all know, there is still much work to be accomplished.  The Society will invest $50 MILLION FOR MS RESEARCH IN 2014. We have just made new funding commitments to support 83 new research and training projects worldwide beginning in April and July, all with the goal of providing people affected by MS with the solutions they need to live their best lives. 

Connecting You to MS Research

It can be challenging to keep up with all of the incredible progress being made in MS research today. As we continue to ask new questions and uncover new answers on our path to stopping MS, restoring function and ending MS forever, it becomes more important than ever for the Society to lead the way in providing people across the MS movement and beyond with valuable information, tools and resources to further fuel our incredible research momentum.  

Research is essential to finding solutions that change the lives of people with MS. That’s why I’m thrilled to share that research now plays a predominant role throughout the Society’s next generation website, which launched in late February at www.nationalmssociety.org. Not only will you find the latest news on research advancements, clinical trial alerts and Society investments front and center on the homepage, you’ll also learn more about the Society’s research approach and how the results of these investments continually inform the critical information, programs and services we provide people impacted by MS on a daily basis. 

Understanding and ending MS can’t come fast enough. It will take all of us working together, learning, sharing, connecting and engaging others in the MS research revolution to make it happen. As a key supporter of MS research, I look forward to hearing about your experience with our new site. I hope it will continue to inspire your generosity and commitment to finding solutions that will change the lives of people with MS.

Yours truly,

Cyndi Zagieboylo

Promising Research on MS Trigger Proceeds with Society Funding

In its effort to pursue all promising paths to uncover solutions for everyone with MS, the National MS Society has recently committed funding to a team of researchers at Weill Cornell Medical College in New York City to follow up on exciting preliminary findings on a possible MS trigger.


Lead investigator Dr. Tim Vartanian and team recently reported additional findings related to epsilon toxin and multiple sclerosis. Epsilon toxin is produced by a fairly common strain of bacteria. The team had previously reported evidence of this toxin in a woman newly diagnosed with MS, and then determined that about 10% of people with MS showed signs of having been exposed to the toxin. Their new study reported effects of the toxin in mice, where it can cause nervous system damage similar to that seen in MS.


Research funded by the Society beginning in April will focus on analyzing exposure to epsilon toxin in a larger sample of people with MS and healthy controls. This research is necessary to find out whether this toxin may actually trigger the disease in some people, and how it might be related to other known MS risk factors.
This study should provide vital information to help determine whether epsilon toxin is a trigger for MS, and whether this trigger can be stopped or prevented.

Donors tour Dr. Vartanian’s lab (second to left) at Weill Cornell to learn more about the team’s investigation.

Producing the Best and Brightest MS Specialists

People with MS need access to the highest quality care to live their best lives. In recent years the ability to ensure that this care is available to everyone living with MS has come under threat due to the static or shrinking MS physician workforce. Fewer doctors are choosing neurology as a specialty, and even fewer the sub-specialty of multiple sclerosis care.

To ensure that high quality care is available in the future, the National MS Society has recently enhanced its clinical fellowship opportunities by committing more than $4 million to support the training of physicians in the comprehensive and multidisciplinary care of people with MS through the recently launched Institutional Clinician Training Award Program. Its aim is to provide MS clinical experts and their institutions with the funding and opportunity to become magnets for promising young physicians interested in learning how to care for people with MS.

This new approach provides five years of funding to an institution to support the establishment of a world-class training program. The result is a consistent and continuing opportunity to attract and train several highly skilled MS clinicians over multiple years. The Society’s recent commitment through the Institutional Clinician Training Program provided awards to the following institutions:

  • Brigham and Women’s Hospital, Boston, MA
  • Children’s Hospital of Philadelphia, Philadelphia, PA
  • Cleveland Clinic Foundation, Cleveland, OH
  • Mount Sinai School of Medicine, New York, NY
  • University of California, San Francisco, San Francisco, CA
  • University of Chicago Medical Center, Chicago, IL
  • University of Rochester Medical Center, Rochester, NY

These world-renowned MS Clinical Care Centers draw from complex and varied MS patient populations and conduct cutting-edge clinical research, resulting in programs that provide advanced, comprehensive training.  This training focuses on all aspects of patient management, including monitoring disease course, utilizing treatments, managing symptoms, multidisciplinary care, as well as exposure to clinical research. 

“We are excited to develop a comprehensive program to ensure that our center trains highly competent MS experts capable of providing evidence-based, carefully considered therapeutic management for all MS patients.”

-Brenda Banwell, M.D, Children’s Hospital of Philadelphia, Philadelphia, PA, Mentor
 

The award’s unique flexibility allows the mentor and fellow to create a customized training plan tailored to the fellow’s background, interests and career goals that may span one to three years. And the Society’s five-year award gives mentors the certainty they need to attract and recruit the best candidates.

Given the world-class training and flexibility offered through Institutional Clinician Training Awards, mentors are able to attract and capture the talent and commitment of the most promising young physicians. These awards will produce the next generation of clinical care specialists with a depth and breadth of knowledge required to provide exceptional care to people with MS well into the future.

Fueled by Optimism

At the time of her MS diagnosis in 1995, Perry Ann Jeveli was a 30-year old graduate student studying business and looking forward to a bright career. Shocked by her inability to see clearly or walk unassisted during her initial exacerbation, Perry Ann sought to understand the impact MS might have on her future.  As she learned more about the disease, she became convinced that there must be similar people living active, healthy lives and benefiting from research advances.


“At that time, I simply would not accept that my diagnosis meant the end for me. I knew there must be other sides to this disease. I wanted to understand what was possible,” reflects Perry Ann.


Fueled by her optimism, Perry Ann worked with her neurologist Dr. Stephen Hauser at University of California, San Francisco to take advantage of one of the first therapies available for people with MS.  Fortunately, she fully regained her function and has remained active. Determined to do her part, she formed a Northern California Walk MS team, affectionately dubbed “Pear’s Pack” by her teammates after her nickname.


As she learned more about the Society’s funded research taking place at UCSF, Perry Ann resolved to increase her volunteer effort. In partnership with the National MS Society and UCSF in 2013, she created the Jeveli Research Fellowship, whereby promising young doctors receive special training from MS experts at UCSF to develop the complex skills involved in the design, implementation, and analysis of clinical trials in MS, with the goal of accelerating much needed treatments.


“With so much promising research taking place, alongside the critical need to attract outstanding MS researchers, it was important for me to further refine the focus of our donors’ dollars. Our amazing donors appreciate our efforts and the direct correlation that their donations have with exciting research advances,” Perry Ann said.


At the National MS Society Leadership Conference in November (see photo), Perry Ann had the opportunity to meet the first Jeveli Research Fellowship recipient supported by Pear’s Pack’s fundraising efforts, Dr. Sabeen Lulu, whose work focuses on pediatric MS.


Over the years, Perry Ann’s continued optimism and determination has made a substantial impact on people with MS. To date, Pear’s Pack has raised more than $500,000 to support MS research through the Society.


Today, Perry Ann’s commitment to MS is stronger than ever. Not only is she continuing to grow her team’s fundraising to support focused research initiatives, she is also eager to lend her ear and heart to those newly diagnosed, sharing her hope and optimism for the future.

(Perry Ann (left) and her mother (right) proudly standing alongside Dr. Sabeen Lulu at the 2013 Society  Leadership Conference) 

Join Perry Ann and others in supporting future MS researchers and clinicians!

Whether you’re interested in fellows who will be providing critical care to people with MS or advancing cutting edge research, there are a variety of funding options and naming opportunities to choose from. Connect with your local chapter to explore these opportunities further. 

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