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NOW Quarterly Update Our $250M Commitment

FALL 2012

Could bacteria be triggering MS attacks? Hear from Dr. Robert Clark Robert Clark, MD, is a highly regarded Associate Professor of Medicine at the University of Connecticut School of Medicine, and also Associate Professor in the Department of Immunology, Center for Immunotherapy of Cancer and Infectious Diseases at UConn. The Society has committed to a three year, $650,846 research grant for Dr. Clark to study the role of bacteria in immune system attacks, and is currently seeking funds to support this innovative area of research. National MS Society: While the cause of MS is still not known, scientists believe that a combination of several factors may be involved — including environmental. Tell us about the possible role bacteria could play in launching an immune system attack in MS. Dr. Robert Clark: Bacteria that normally inhabit our bodies, called commensal bacteria, could play a number of roles in initiating immune system attacks in MS. For example, factors produced by certain bacteria residing in the intestines or other sites may alter the type of immune responses generated elsewhere in the body. Thus, an immune response that is normally harmless could become a damaging type of response. The Society: If bacteria are playing an active role in triggering an attack on the myelin, what could treatment options look like for people with MS?

Dr. Clark: First we need to identify potentially active commensal bacteria in MS, or factors emanating from them, that are mediating damaging types of immune responses. Once identified, these bacteria could be eliminated with specific drug therapy, or the relevant bacterially-derived factors could be neutralized with biological reagents such as specific antibodies. for ms, i derive additional motivation from personal involvEment, having had a sister with the disease. — Robert Clark, MD The Society: What motivates you personally in your efforts, to spend countless hours in a lab researching this disease? Dr. Clark: As with most investigators, I am motivated by the intellectual challenge of understanding the underlying mechanisms of disease and subsequently developing new therapeutic approaches. For MS, I derive additional motivation from personal involvement, having had a sister with the disease.

Did you know that Society funding identified the link between vitamin D and MS risk?


FALL 2012

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Propelling the whole continuum of ms research

A blood-based diagnostic test for MS?

Some of you may wonder “what is different about the NOW campaign?” and “why is NOW an ‘MS Research Revolution?’” These are important questions around the National MS Society’s goal to raise $250 million for MS research, and to devote 25% of total Society revenue to MS research by 2015. NOW is different and revolutionary because it involves a comprehensive approach to MS research and treatment, driving promising research for everyone with multiple sclerosis. Our commitment is not just to some people with certain forms of disease or experiences; instead, we are committed to solutions for all, and ultimately a world free of MS. Thus no stone can be left unturned, and no promising path can be left unexplored — we must fund the full continuum of MS research. In this issue you will see this comprehensive research strategy in action, with the Society funding more than 60 fellowships at institutions across the country, and a young, bio-tech company that could develop an innovative diagnostic test for MS. While we are pursuing all promising solutions, we are guided by three, clear goals: to stop disease progression, restore lost function and end MS forever. This MS Research Revolution depends on the support and engagement of an army of volunteers, donors, staff and every single person who is passionate about advancing research. While our roles and contributions will be unique, all are vital in achieving a world free of multiple sclerosis.

Fast Forward, the Society’s initiative to accelerate commercial developments of new treatments for MS, launched a new partnership with DioGenix, a molecular diagnostics company in Gaithersburg, MD that has a background in gene-based diagnostics. DioGenix will receive an initial investment of $479,000 from Fast Forward to drive progress of their program which, if successful, will lead to a simple blood test that can aid physicians in the clinical diagnosis and monitoring of MS.

NOW Building on past progress for speeding Ms diagnosis 1947

Society’s first research grant to Dr. Elvin Kabat, uncovers antibodies in the spinal fluid of people with MS, leading to an early diagnostic test still used today for MS

1996

Society task force develops the first formal categories of clinical patterns of MS, revolutionizing clinical trials and facilitating the approval of new treatments by the FDA

2001

Society task force revises diagnostic criteria for MS, which hadn’t been updated in 20 years, to incorporate advances such as MRI to speed diagnosis and increase accuracy

2005, 2010

Diagnostic criteria updated and enhanced, further reducing waiting time for accurate diagnosis

2008

Task force convened by Society publishes map for distinguishing MS from look-alike disorders, further speeding diagnosis and early treatment options

2012

Through NOW funding, work continues to define biology underlying MS to improve diagnosis and treatment

Yours truly,

Cyndi Zagieboylo President & CEO, National MS Society


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Meet Dr. WEndy vargas, Society fellow In July Wendy Vargas, MD, Weill Cornell Medical Center/ NY Presbyterian Hospital, joined a group of more than sixty fellows funded by the Society. Dr. Vargas was awarded a one-year, $65,000 MS Clinical Care Physician Fellowship, for post-residency training in specialized MS clinical care. In her own words, read what led Dr. Vargas to the field of MS: “As a 4th year child neurology resident, I had the privilege of treating a 15 year old girl with multiple sclerosis. Her story is what inspired me to pursue a career in MS. Her mother was diagnosed with MS in her early 30’s, thus my patient was familiar with MS. She was living in Puerto Rico and experienced multiple neurologic symptoms in that tropical climate, though she never sought further neurologic care. Her symptoms progressed to an inability to walk unassisted. At her father’s urging, she returned to the United States for care. I met her then. Her repeat MRI showed numerous brain and spinal lesions. Asked why she never sought medical attention in Puerto Rico, she replied “I thought that kids couldn’t get MS”. Her response ignited a flame within me that I hope will never burn out. I became passionate about addressing this common misconception held by not only patients but also physicians. There is a growing body of evidence that 5% of adult patients with MS report symptom onset before age 18. However, as was clear in my patient’s case, failure to treat MS early on in the disease course leads to poorer outcomes. Further, the latest research suggests that the burden of cognitive dysfunction is greater in pediatric patients with MS. My long- term goal is to contribute substantially in the dissemination of accurate information about how the disease affects children as well as adults.

A fellowship in pediatric and adult MS will allow me the resources to achieve my goals. I will work closely with both adult and pediatric neurologists who take care of MS patients and have the benefit of excellent mentors in an institution that prioritizes training and is committed to delivering top-flight MS care. I will also have access to the resources necessary for clinical research through a fellowship. While there are cohort studies in children demonstrating safety and tolerability of using standard therapies for treatment of adult MS, no randomized controlled trials exist for treatment of MS in children. In fact, none of the current treatment options are approved for use in children. I am excited about the opportunity to pursue my professional passion, and I thank my aforementioned patient for opening my eyes and setting me on this path.” I am excited about the opportunity to pursue my professional passion, and I thank my aforementioned patient for opening my eyes... — Wendy Vargas, MD From inception, funding six fellows in 1955, the Society’s Fellowship Program has trained more than 800 scientists, clinicians and medical professionals in the field of MS research. We depend on philanthropic support to encourage Wendy, and other talented scientists like her, to become the next generation to treat people with MS and to advance MS research faster. They are our future — ensuring that the momentum building in MS research for more than 65 years is not lost. To find out how to support them please call 800.923.7727 or visit nationalMSsociety.org/research to learn more about fellowships in MS.


FALL 2012

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MEET DOLLY AND MERWYN DAN Boca Raton, Fla., residents Dolly and Merwyn Dan insist they are like anyone else in the MS movement. True, they actively volunteer and seek effective means to move us closer to a world free of MS. However, they have found their own unique way of harnessing their commitment to end multiple sclerosis. They inspire, engage and challenge fellow volunteers to increase the research funds needed to speed new and better therapies to individuals living with MS, including their youngest daughter who lives in Chicago and was diagnosed in 1998. That diagnosis changed the Dan family’s life forever. “We hope and pray every day that something more will develop in research,” Dolly explains. Merwyn adds that he and Dolly are specifically interested in myelin repair, which they believe one day will stop their daughter’s disease progression and restore the function she has lost to MS. “This is the key opportunity for our daughter,” Merwyn says. They are impatient for research to move faster, and want to see a solution for their daughter in their lifetime. In response, since the beginning of their involvement with the Society, the Dans have supported research grants related to myelin repair. Most recently their support of the Society

included a $1 million long-term pledge to Fast Forward, which focuses on accelerated commercial developments of new treatments for MS. The Dans’ gift helped develop a targeted program in nervous system repair. “We would like to see a faster route to the solution, and Fast Forward is an important step in moving research along at an accelerated pace,” explains Merwyn. Dolly and Merwyn are passionate about getting other families to give to research, and see an opportunity in the NOW campaign. “The more that others contribute to this effort, the more partnerships Fast Forward will be able to make — and the more scientific grants the Society will be able to award,” Merwyn says. “There are many promising leads, but limited funding.” Dolly and Merwyn see NOW’s $250 million commitment to research as critical to addressing this dilemma, and with their pledge they challenge others to make the most meaningful gift they can to advance groundbreaking discoveries. JOIN THE DANS IN THE GOLDEN CIRCLE The Golden Circle is a membership program acknowledging the important support of individuals who truly make their mark against MS by annually giving $1,000 or more. Please make a personally meaningful gift to the Society’s NOW research campaign online (nationalMSsociety.org/gc) or by phone (1.800.344.4867).

For more information, contact:

Taylor Mallia Associate Vice President, Strategic Philanthropy taylor.mallia@nmss.org National Multiple Sclerosis Society

Join the MS Research Revolution: nationalMSsociety.org NOW and No Opportunity Wasted utilized with permission from NOW, Inc., and in partnership with Phil Keoghan, tireless advocate and Champion for MS Research.


NOW Quarterly Update Fall 2012