FALL 2014 DElaWARE, SOUTHEasTERN PENNSYLVANIA & SOUTH JERSEY MSCONNECTION NEWslETTER FacING Off WITH MS In his days as a hockey player, Bill Clement faced some very tough challenges. During his career he won two Stanley Cups with the Philadelphia Flyers, he played in two all-star games and was the captain of the Atlanta Flames. He was slashed, cross-checked and tripped, but that’s nothing in comparison to what happened after he hung up the skates for good. A personal bankruptcy and raising a daughter with special needs were just two of the challenges he faced; and then his daughter Christa started to have MS-like symptoms. You can hear Clement discuss hockey, business and MS at one of our upcoming annual meetings. Find out how you can register on page 08. INSIDE 06 09 10 14 26 NATIONAL ADVANCING THE THE ALTERNATIVE FacE OF MS: THIS CAREGIVERS MYELIN GaTHERING WORK JOAN MONTH RESEARCH TaBLE ARRANGEMENT WHEELER ISSUE MAZE 02 MS CONNECTION: FALL 2014 GREATER DELAWARE VALLEY CHAPTER DELAWARE CHAPTER National Multiple Sclerosis Society National Multiple Sclerosis Society 30 South 17th Street, Suite 800 2 Mill Road, Suite 106 Philadelphia, PA 19103 Wilmington, DE 19806 1-800-548-4611 302-655-5610 CHAIR: Marianne Jackson CHAIR: Maria McCabe VICE CHAIRS: Valli Baldassano, Roger Dennis VICE CHAIR: Matt Lenzini PRESIDENT: Tami Caesar INTERIM PRESIDENT: Craig Robertson CONNECT WITH US ONLINE: CONNECT WITH US ONLINE: nationalMSsociety.org/pae n [email protected] nationalMSsociety.org/ded n [email protected] Like us: facebook.com/greaterdelMS Like us: facebook.com/msdelaware Follow us: twitter.com/greaterdelMS Follow us: twitter.com/MSSocietyDE Watch us: youtube.com/nmsspae Watch us: youtube.com/mssocietyde Pin us: pinterest.com/greaterdelvalMS Pin us: pinterest.com/MSsocietyDE ©2014 National Multiple Sclerosis Society, here solely because they are considered Greater Delaware Valley Chapter valuable information. 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Such names appear NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS 03 LETTER FROM THE PRESIDENTS dollar raised over the past 35 years has helped people diagnosed with MS overcome their daily challenges while another portion PEdalING FOR has furthered research into stopping MS progression, restoring nerve function and PROGREss ending MS forever. This past month we received news that the FDA approved Every September, the Plegridy, making it the 11th disease National MS Society modifying treatment for MS. hosts two of the best Bike MS events in the country On that day of the very first Bike MS right here in our area. For event, there were no treatments for people decades, Bike to the Bay living with MS, nor were there many direct TamI CAESAR, and City to Shore have services available to help people affected PRESIDENT, been generating funds GREATER DELAWARE by the disease. The progress the MS VALLEY CHAPTER and bringing new people community has experienced in treatment to the MS movement. options as well as community resources can This September, the be directly attributed to the hard work of two rides attracted an our cyclists and volunteers, some of whom amazing 8,000 cyclists have been with us from the very beginning. and generated nearly $7 On behalf of the thousands of people who million. have been helped by your commitment and And that’s only part of generous spirit, we thank all the cyclists, CRAIG ROBERTSON, EXECUTIVE VICE the Bike MS story. Our committee members and volunteers who have PRESIDENT, two local rides are part of made this one of our most successful Bike EasT REGION a vast national network of MS campaigns ever. And we look forward to more than 100 rides that working with you over the next 12 months to have raised $1 billion since the first ride make Bike MS 2015 even better. was launched in Minnesota in 1980 – and Sincerely, in excess of $80 million in 2014 alone. So when we consider all the progress that has been made in MS research, treatment Craig Robertson, Tami Caesar, President and care over the years, we should not Executive Vice Greater Delaware overlook the importance of the Bike MS President, East Region Valley Chapter fundraising campaign as one of the most successful and impactful fundraising campaigns in history. Part of every single 04 MS CONNECTION: FALL 2014 Baltimore) and the study accelerate results with is funded by a research the most impact and to NEWS grant from the National change the lives of people MS Society, with partial living with progressive BRIEFS support from the Society’s MS,” commented Dr. Greater Delaware Valley Alan Thompson, Chair of Chapter. the Alliance’s Scientific MS TRIAL ALERT: Steering Committee and TRIAL OF VITAMIN D GLOBAL EFFORT TO Dean of University College London Faculty of Brain SUPPLEMENTATION END PROGRESSIVE MS Sciences. RECRUITING PEOPLE GETS $30 MILLION IN WITH RELAPSING- RESEARCH FUNDING SALT INTAKE MAY HAVE AN IMPACT ON MS REMITTING MS- NOW The International RECRUITING IN Progressive MS Alliance ACTIVITY has awarded its first round A recent study, which PHILADELPHIA of 22 research grants to followed a cohort of investigators in 9 countries, Investigators at several 70 relapsing-remitting with the goal of removing centers nationwide are patients with MS, showed barriers to developing recruiting 172 people that patients with moderate treatments for progressive with relapsing-remitting to high sodium (salt) intake MS. The Alliance is a MS to compare the also have increased disease worldwide collaborative effectiveness of the current activity (more clinical focused on finding recommended amount of relapses and more lesions solutions to progressive vitamin D supplementation on MRIs). versus high dose vitamin forms of multiple sclerosis The study was conducted D supplementation at that have so far eluded the by Dr. Mauricio Farez, reducing MS disease scientific community. a lead researcher at the activity, when added “By bringing attention to Raul Carrea Institute for progressive MS, convening to standard therapy Neurological Research academic and industry with glatiramer acetate in Buenos Aires. It was leaders, and offering a new (Copaxone®, Teva published in the Journal of source of grant funding Pharmaceutical Industries). Neurology, Neurosurgery to researchers around The principal investigator and Psychiatry. is Ellen Mowry, MD, MCR the world, the Alliance (Johns Hopkins University, is positioning itself to NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS 05 SLEEP DISORDERS OFTEN significantly interfere with However, Dr. Rotstein a person’s ability to function did note that obesity in UNDIAGNOSED IN PEOPLE at home and work, and is adolescence has shown to LIVING WITH MS one of the primary causes have an increased risk for of early departure from the developing MS. In a recent study, researchers workforce. Fatigue may “Our study was conducted at UC Davis have be the most prominent purely in adults, with a found that undiagnosed symptom in a person who youngest age of 25,” said sleep disorders may be otherwise has minimal Dr. Rotstein. “All we can responsible for the fatigue activity limitations. The say from our results is that many people with MS cause of MS fatigue is there does not appear to experience. The study was currently unknown. be a direct relationship conducted in over 2,300 between diet quality and individuals with MS and DOES DIET AFFECT MS? risk of developing MS as found that more than 70 an adult. We cannot say percent of participants In a recent study on a anything about eating screened positive for one or group of 185,000 women, habits in adolescence and more sleep disorders. researchers found that risk of MS from these “Sleep disorder frequency, there was no relationship data. It is possible that sleep patterns and between eating a high- the adolescent years are a complaints of excessive quality, healthy diet and a critical window, but our daytime sleepiness suggest reduced risk of developing study doesn’t answer that that sleep problems may be MS. question.” n a hidden epidemic in the “We did not find any MS population, separate evidence that overall from MS fatigue,” said dietary quality is associated Steven Brass, the associate with the risks of multiple clinical professor and sclerosis,” Dalia Rotstein, director of the Neurology MD, from Brigham and Sleep Clinical Program and Women’s Hospital, Boston, co-medical director of the Massachusetts, concluded. UC Davis Sleep Medicine “However further research Laboratory. is required to determine Fatigue is one of the most the possible role of dietary Visit us online at common symptoms of quality in the early years nationalMSsociety.org/ MS, occurring in about 80 and in individual dietary research to stay on top of percent of people. It can elements.” the latest in MS research. 06 MS CONNECTION: FALL 2014 ber of people in the U.S. NOVEMBER will likely take on care- IS NATIONAL giver respon- sibilities and experience a CAREGIVERs range of re- percussions related to MONTH the time, ac- tivities and November is National Caregivers Month – money that a time to acknowledge friends, family and they must neighbors who provide care to others. allot to care- SHOW YOUR caREGIVERS SOME giving.