SUMMER 2016 NEW YORK CITY - SOUTHERN NEW YORK CHAPTER MS CONNECTION NEWSLETTER INSIDE 03 04 05 06 WALK MS 2016 CHAPTER VOLUNTEER RESEARCH THIS WRAP-UP NEWS CORNER ISSUE 2 MS CONNECTION: SUMMER 2016 PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY, NEW YORK LETTER FROM THE CITY - SOUTHERN NEW YORK CHAPTER 733 THIRD AVENUE, NEW YORK, NY 10017 CHAPTER PRESIDENT 212-463-7787 Welcome summer! Chairman For many of us this is the time Jeffrey L. Silverman of year we are able to slow down, Secretary take some time off, enjoy the easi- er pace of summer but remain mindful that the heat may worsen Tobi Rogowsky Treasurer MS symptoms. We encourage you to read this issue of MS Con- Malcolm P. Wattman, Esq. nection while taking advantage of the warm weather outdoors or in a comfortable air conditioned environment. President Robin Einbinder, LCSW, MPH We at the chapter will continue to stay engaged with the work Editor in Chief at hand for the thousands of people in our community impacted Liz Samurovich by multiple sclerosis and invite and encourage you to join us for Editor our summer programs including: Traveling with MS, Tennis, Daphne Mack Education programs at affiliated Partners in MS Care, and Designer Creative Writing. Daisy Chong Fueled by your donations, these programs help us provide services focused on your physical and emotional well-being; understand- CONNECT WITH ing that caring for mind, body and spirit is what helps people US ONLINE: affected by MS live their best lives. www.MSnyc.org [email protected] So we hope you’ll sit back, relax and enjoy reading this issue which contains a great interview with Janis Winehouse, the mother of Like us: the late singer Amy Winehouse, who visited us from across the facebook.com/NYC pond, and an article about longtime volunteer Derek Ishmael SouthernNY whose dedication to fundraising and awareness building on Staten Follow us: Island is inspiring. twitter.com/NMSS_ Best wishes, NYCSNY YouTub e : MultipleSclerosisNYC Robin Einbinder Instagram: President @multiplesclerosisNYC JOIN THE MOVEMENT: www.MSnyc.org 3 DAVID OSMOND INSPIRES AND ROCKS WALK MS NYC On Sunday, April 17, beautiful weather, more than 5,000 walkers showing community spirit and a tal- ented guest performer, by the name of David Osmond, came together on Pier 26 in Manhattan to close out the 2016 walk season at the chapter. Walk MS NYC – Southern NY took place over two weekends in April at five additional sites – West- chester, Putnam, Rockland and Orange Counties and Staten Island – raising awareness and funds for local programs and services to help more than 12,000 people living with MS in our community live their best lives and support the Society’s critical research to drive progress and help transform the pace of MS research progress – accelerating breakthroughs that will change lives and end MS forever. David, who is living with MS, inspired walkers during the opening ceremony by sharing his journey with the disease, which included temporary paralysis. David is the son of Alan Osmond of the iconic Osmond Brothers music group. Alan too is living with MS. David was the recipient of the National MS Society’s prestigious Spirit of Life Award as well as the Ambassador of the Year Award in 2012. In partnership with Novartis Pharmaceuticals Corporation, he launched Our Voice in Song™, an educational campaign that aims to empower people with relapsing MS to take charge of their disease. He performed his inspirational song, inspired by his grandfather’s words, “I Can Do This.” On the Cover: Chapter President Robin Einbinder and singer, songwriter, musician David Osmond at Walk MS NYC. *This issue has been brought to you by a generous grant from 4 MS CONNECTION: SUMMER 2016 CHAPTER NEWS “The diagnosis was a relief but MS is difficult and so varied in everyone, so you just have to look at it as it is, and deal with it,” she says. “You MS WARRIOR FROM just have to accept what you can and cannot do.” Janis eventually developed spasticity in her right ACROSS THE POND leg and some lesions on the brain, which affected her memory and concentration that resulted in her being permanently restricted from driving. Janis, who is active with the MS Society United Kingdom fundraising and serving as an ambassa- dor, says although she has never hid her MS she “really didn’t talk about it” until “a year prior to the death of Amy.” “MS is a cruel mistress but you can still challenge her,” she says. “Don’t be afraid to challenge MS and be positive, don’t look at what you can’t do, It was 1979 and she was 25 years old, married look at what you can still do.” and had just given birth to her son Alex, when she first experienced tingling in her fingers and feet. SAVE THE “They (the doctors) kept saying it might be, it could be (MS) but they couldn’t say abso- lutely; but they did tell me not to get pregnant DATE! again,” says Janis Winehouse, mother of the late Sunday, GRAMMY award-winning singer Amy Wine- October 23, 2016 house, during a visit to the chapter. “But in 1983, Pier 92/94, Amy was born.” Manhattan Janis, who was born in Brooklyn, but raised and REGISTER AT: www.bikeMSnyc.org still resides in London, England, was in New TAKE $10 OFF REGISTRATION: York City, with her husband Richard, to meet Use discount code: MSC with the publisher of her first book, “Loving There is a required fundraising minimum of Amy: A Mother’s Story.” $200 and a registration fee of $55. Janis was officially diagnosed with multiple scle- The registration fee increases to $75 in August rosis in 2003 and had to be hospitalized for the so sign up today! exacerbations (flare-ups) that are associated with the relapsing-remitting form of MS she lives with. *This issue has been brought to you by a generous grant from JOIN THE MOVEMENT: www.MSnyc.org 5 VOLUNTEER CORNER For more than a decade, Derek Ishmael, of Staten Island, has not only been a dedicated volunteer for the chapter but also a suc- cessful fundraiser. Derek says the first event which he volunteered for was Bike MS NYC when his wife, Barbara McKeon, the chapter’s Director of Employment Services, joined the staff. DEREK ISHMAEL However, his connection to multiple sclerosis comes through Scott Singer, the best man at their wedding who was diagnosed “VOLUNTEERING with MS about 25 years ago. "We truly admire him for going into work every day while navigating mobility issues without GIVES ME A SENSE complaint,” he says. OF SATISFACTION” Derek volunteers annually for Walk MS, Climb MS and Bike MS. Additionally he has volunteered for the Women on the Move Luncheon, Adaptive Tennis, Muckfest MS, and Race Against MS. However, he found his event of choice in Walk MS Staten Island saying he “loves doing the Walk because it has a great sense of community and since no special equipment or training is needed anyone can participate.” In the 10 years he has co-led his team, The FunRaisers, they have grown from four members to at times as many as 24, and have cumulatively raised more than $40,000 to drive groundbreaking research, provide life-changing programs and guarantee a supportive community for people living with MS. “Volunteering allows me to give back to the community which makes me feel productive,” says Derek, who is retired now. “Moreover, I’m very impressed by the work ethic of the hard working staff at the chapter.” To learn more about volunteer opportunities, email [email protected]. *This issue has been brought to you by a generous grant from 6 MS CONNECTION: SUMMER 2016 ADVOCACY (Congressmans Tonko and Maloney) signed on to our funding request for the National In- stitutes of Health. These funds will be used to analyze how the immune system responds to dif- ferent stimuli while providing the basic research to develop MS therapies. RESEARCH A NEW WAY TO SEE Magnetic resonance imaging (MRI) of the brain helps doctors diagnose multiple sclerosis and ob- serve disease activity and progression in people with the disease. However, MRIs have limita- tions and can be a time-consuming, expensive ADVOCATING FOR MS and – for some people – frightening procedure. For these reasons and others, researchers have ON CAPITOL HILL been exploring optical coherence tomography, The Public Policy Conference in Washington, or OCT, as a non-invasive, relatively inexpensive D.C., focused on three key issues: MS Research and well-tolerated imaging method to track dis- funding, the Advancing Research for Neurologi- ease progression and the effects of MS therapies. cal Diseases Act and access to MS medications. Chapter staff and volunteers met with Senator Results of a four-year study, published Novem- Charles Schumer, who agreed to sign on to our ber 2015 in Annals of Neurology, suggest that priority legislation, the Advancing Research for the rate of tissue thinning seen on OCT reliably Neurological Diseases Act (S.849). This bill would mirror overall brain degeneration, with specific create a centralized data collection system at the layer of the retina showing atrophy at similar Centers for Disease Control (CDC) and would rates as specific brain regions seen with MRIs. In track and collect data on neurological diseases. addition, these similar rates of atrophy between In addition, we were also able to recruit OCT and MRI were more strongly associated in a new member for the Federal MS Cau- progressive MS. cus, Congressman Sean Patrick Maloney. As a result of our meetings on Capitol Hill, two Learn more at www.nationalMSsociety.org/re- more members of Congress from New York search.