Inside This Issue and Then There Were 10
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SPRING 2013 GREATER DELAWARE VALLEY CHAPTER MSCONNECTION NEWSLETTER NEW ORAL THERAPY AVAILABLE AND THEN THERE WERE 10 Earlier this spring, the Food and Drug Administration approved Tecfidera™ capsules (dimethyl fumarate) as a first-line disease-modifying therapy for people with relapsing forms of MS. This makes the third oral therapy approved for relapsing MS in just three years, and the tenth disease-modifying treatment available in the U.S. Tecfidera, which is taken twice a day, is thought to inhibit immune cells and molecules, and may have anti-oxidant properties that could be protective against damage to the brain and spinal cord Twice- daily Tecfidera was shown in clinical trials to significantly reduce relapses and CONTINUED ON PAGE 5 INSIDE 10 11 16 22 26 BUT YOU FIRED FOR MS IS NOT CONNECTION FACE OF THIS LOOK SO HAVING MS: WHO I AM — GROuP — MS: KATHRYN GOOD — JANE GAGLIARDO’S IGOR GETTING YOU PANNEPAcKER ISSUE LATOYA ROss STORY ST. PHARD CONNECTED 02 MS CONNECTION: SPRING 2013 NATIONAL MULTIPLE SCLEROSIS SOCIETY Greater Delaware Valley Chapter LOCAL EVENTS 30 South 17th Street, Suite 800 TO REGISTER FOR THESE OR OTHER Philadelphia, PA 19103 1-800-548-4611 EVENTS, VISIT CALENDARMS.ORG. CHAIR: Marianne Jackson MAy 11 New Horizons: Latest in Research, VICE CHAIRS: Valli Baldassano, Larry Kane Treatments & Resources, Reading, PA PRESIDENT: Tami Caesar VICE PRESIDENT, CLIENT SERVICES, COmmuNICATIONS MAy 14 LINKS teleconference: Minimizing AND OPERATIONS: Kevin Moffitt Your Risk of Falls EdITOR: Yarissa Reyes MAy 21 LINKS teleconference: Healthy Living ©2013 National Multiple Sclerosis Society, with MS: Diet & Nutrition Greater Delaware Valley Chapter MAy 28 LINKS teleconference: Clinical Trials Information provided by the Society is based & Progress in MS upon professional advice, published experi- ence and expert opinion. Information provided MAy 29 An Evening at the Devon Horse Show in response to questions does not constitute & Country Fair, Devon, PA therapeutic recommendations or prescriptions. JUNe 8 & 9 MuckFest MS, Newtown Square, PA The National Multiple Sclerosis Society recom- mends that all questions and information be JUNe 20 MS Family Night with the Reading discussed with a personal physician. Fightin’ Phils The Society does not endorse products, servic- es or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability CONNECT WITH us ONLINE: for the use or contents of any product or ser- nationalMSsociety.org/pae n [email protected] vice mentioned. MSConnection welcomes letters to the editor. Like us: facebook.com/greaterdelMS Send letters to [email protected] or the address Follow us: twitter.com/greaterdelMS above. Include your name and a phone number or email where we can reach you, if necessary. Watch us: youtube.com/nmsspae NOTE: we may edit your letter for length and Pin us: pinterest.com/greaterdelvalMS content. NATIONALMSSOCIETY.ORG/PAE | 1-800-548-4611 03 LETTER FROM THE PRESIDENT remitting MS developed progressive MS within 10 years. Long-term data are not yet available to determine if treatment significantly delays this LOOKING FOR PROGRESS transition. ON PROGRESSIVE MS The stark realities and continued lack of treatment options for progressive MS have As the cover led the Society to lead the formation of the story suggests, International Progressive MS Collaborative. In there is much the first meeting held earlier this year, more than cause for 170 MS researchers and clinicians from around optimism the world gathered to discuss key challenges and in the MS strategies to accelerate treatments for progressive community. forms of MS. With the approval of Leading experts across all the major research a third oral areas set priorities for moving forward. They TAMI CAESAR, PRESIDENT treatment, talked about the potential of repurposing and the tenth treatments for other diseases; the need for faster FDA-approved medication for relapsing forms and more economical clinical trial designs to of MS overall, we can again take pride in the speed research; the potential impact of symptom strides we are making on behalf of people living management/exercise programs and much more. with MS. In addition, we are thrilled we have While a meeting is not a new treatment, it raised the necessary monies to fully fund the is a beginning. And just as everyone who is vitamin D clinical trial aimed at stopping disease raising money for Walk MS, MuckFest MS progression (see page 13 for more information). and Bike MS has a hand in the latest treatment However we are mindful that as people with developments, you are also playing an essential relapsing forms of MS are given more choices, role in bringing some of the best researchers in people living with progressive MS – a group that the world to find ways to treat the most serious may include over 100,000 Americans – are still and destructive form of the disease. This progress waiting for news on the approval for the very is something we can all be proud of as we work first treatment that will slow progression or, for together to make 2013 our most successful year that matter, reverse it. ever. I want to assure everyone in the MS community Sincerely, that progressive MS is something we at the Society take extremely seriously. Before the disease-modifying medications became available, Tami Caesar, President approximately 50% of people with relapsing- 04 MS CONNECTION: SPRING 2013 the central nervous system at protecting the nervous among academic drug system from MS damage. RESEARCH discovery centers to maximize their potential and accelerate SOCIETY-suPPORTED BRIEFS drug discovery efforts within the neuroscience community. STudIES POINT TO NATIONAL MS SOCIETY POssIBILITY THAT JOINS COLLABORATIVE RESEARCHERS REPORT DIETARY SALT MAY EffORT TO IDENTIFY AND ON BRAIN IMAGING TO STImuLATE ACTIVITY SPEED DEVELOPMENT DETECT TISSUE DAMAGE OF KEY IMMUNE CELLS OF NERVE-PROTECTING AssOCIATED WITH INVOLVED IN MS DRUGS COGNITIVE IMPAIRMENT ATTACKS The Alzheimer’s Drug IN MS – MAY HELP Three studies by collaborators Discovery Foundation, at Yale, Harvard and MIT/ Beyond Batten Disease DETERMINE BENEFITS OF Broad Institute suggest that Foundation and the National TREATMENTS dietary salt can speed the MS Society announced a Researchers from The development of an MS-like funding collaboration to Netherlands report that disease in mice, and provide support the creation of the they were able to distinguish new insights on immune Collaborative CNS Screening between people with system activity involved in Initiative (CCSI), a central MS who had cognitive MS. While more research repository of chemical impairment (such as memory needs to be done to confirm compounds that have shown and concentration problems) a role for salt in triggering significant central nervous and those who did not, MS, or to determine whether system activity. The idea is based on brain scans using reducing salt can inhibit to share data and speed the a specific type of imaging MS immune attacks, these development of new therapies (DTI, or diffusion tensor studies pinpoint new avenues that may protect the brain imaging). The study suggests for strategies that can from damage. Led by the that loss of nerve-insulating decrease MS attacks. n Harvard NeuroDiscovery myelin, more than the loss Center’s Laboratory of nerve cells, may be a key MORE RESEARCH for Drug Discovery in factor in cognitive problems, Visit us online at Neurodegeneration, the and supports the approach nationalMSsociety.org/pae CCSI will share emerging of using DTI as one way to stay on top of the latest compounds with the to measure the impact of MS research. potential to treat diseases of potential therapies aimed NATIONALMSSOCIETY.ORG/PAE | 1-800-548-4611 05 CONTINUED FROM COVER (within 6 months) blood cell count, and repeat the blood cell count annually thereafter. disease activity on MRIs, and in one trial it Before starting treatment with Tecfidera, reduced progression of disability. The FDA’s women should talk to their health care approval was based largely on results of two providers if they are pregnant or planning to large-scale phase III studies of Tecfidera become pregnant. capsules, which were conducted in people with relapsing-remitting MS. The results were Taking a disease-modifying therapy is published in 2012 and showed that it reduced currently the best way to reduce MS disease risk of relapse by as much as 49%. activity. Selecting an MS therapy should be done in collaboration with an MS specialist. Common adverse events experienced by To find a neurologist in your area, call people taking Tecfidera include flushing and 1-800-FIGHT-MS. n gastrointestinal events issues. Before starting treatment, the FDA recommends that a person’s health care provider assess a recent DID YOU 2012 KNOW? SPRING SUMMER More than 4,400 local people living with MS have made a donation to the Society or have raised money by City to Shore taking part in one of our fundraising Ride 2012 events since 2010. Make 2013 your year to participate in one of these great events! FALL YEAR-ROUND 06 MS CONNECTION: SPRING 2013 SPRING 2013 INTERNS CHAPTER < AubREY BELLEZZA, MARKETING > < AmY BENDEKOVITS, DEVELOPMENT > WELCOMES NEW < JACQUELINE BENE, DEVELOPMENT > < KAITLYN BENNETT, MARKETING > INTERNS < LINdsAY DEAL, MARKETING > From advocacy and community outreach to < CASSANDRA DRAMIS, COmmuNITY OuTREACH > marketing and development, these 19 interns < MARY CAITLIN DUGARY, MARKETING > are making their mark against MS this spring < NATASHA FRIEND, COmmuNITY OuTREACH > semester. These students, seeking a challenge < NINILOLA JEGEDE, COMMUNITY OuTREACH > and the opportunity to further their college experience, support chapter staff in planning, < MARGARET KATANA, AdvOCACY > cultivating, marketing and other duties that < ERIN KENNEDY, DEVELOPMENT > provide them with lasting skills and contribute < COLLEEN KOBOL, COmmuNITY OUTREACH > to the success of the chapter. < ALLISON LEYH, DEVELOPMENT > If you or someone you know is interested in < JEssICA MILINICHIK, AdvOCACY > our internship program, please contact Joy McManus at 1-800-548-4611 or email < CARLY MITCHELL, DEVELOPMENT > [email protected].