THIS ISSUE: Off-Label Drugs Page 13 CONNECTION RIDING FOR FAMILY SUMMER 2016 L E S C L I P E R LT O S U I M S L S O A C N I E O I T T Y A Permit # 01870 # Permit N Hartford, CT Hartford, PAID U.S. POSTAGE U.S. ORGANIZATION NON-PROFIT Mike Marques Photography Mike JUNE 5 > WINDSOR GRIFFIN CENTER BUSINESS PARK JUNE 12 > NORWALK CRANBURY PARK Register at ctfightsMS.org THANK YOU TO OUR PREMIER NATIONAL SPONSORS CONNECTICUT TITLE SPONSOR CONNECTICUT PRESENTING SPONSORS NATIONAL MULTIPLE SCLEROSIS SOCIETY CHAIRPERSON’S MESSAGE CONNECTICUT CHAPTER Meet The Board TEL: 860.913.2550 CONNECTION 1.800.FIGHT MS (344.4867) his March at the chapter’s Annual Meeting and quarterly FAX: 860.761.2466 Board of Trustees meeting, board members and officers www.cTFIGHTSMS.orG were elected for the coming year. We also had the oppor- www naTIonalMSSocIeTy orG Ttunity to recognize five members of our chapter who were chosen . for national awards, two of whom are members of our board: Larry John W. “Jack” Betkoski, III Greenhall and Jeffrey Gross, M.D. As these awards were presented, CHaIrperSon, Board oF TruSTeeS I reflected on the board as a whole and how fortunate we are to have them championing the cause. Lisa Gerrol Our board is dedicated to funding the mission. In addition to participating in events, many board members go the distance in preSIdenT and ceo their fundraising. As I mentioned 860.913.2550, exT. 52531 earlier, Larry Greenhall received the national Funding the Mission COMMUNICATIONS Award recognizing that he has over the years raised $1 million for Cynthia Bidorini MS. Also of note is Frank Mon- ASSocIaTe VIce preSIdenT teiro. This year, in recognition of 860.913.2550, exT. 52530 his Walk MS fundraising efforts, Frank received the chapter’s new Mission Champion Award, which DEVELOPMENT recognizes individuals who raise more than $100,000 in one year. Kara Preston Our board is driven. At the be- VIce preSIdenT ginning of the fiscal year, Dr. Jeffrey 860.913.2550, exT. 52533 Gross was inducted into the Na- John “Jack” Betkoski, III tional MS Society’s Volunteer Hall of Fame for Health Professionals in recognition of his dedicated PROGRAMS, SERVICES & ADVOCACY work in the field of multiple sclerosis. Board member David Carter, too, has shown relentless resolve in his fight against MS in memory Lynette J. Coleman of his late brother, Keith. In November 2015 David pledged to VIce preSIdenT match donations to the chapter’s annual campaign, up to $50,000. 860.913.2550, exT. 52538 This match not only helped us achieve that goal, but his story and outreach stirred more people to get involved. This year, we elected David chair-elect. We are also fortunate to have members like Alec EDITOR IN CHIEF Burger, Vice Chair of the Board, who leverage their networks to Jacqueline Sembor help support the cause - as Alec has done each year for the annual MS Dinner of Champions as well as our Golf MS tournament and GRAPHIC DESIGN Walk MS. Hal Wood Our board is talented. By tapping into the special skills that each of our board members bring to the table, we have formed SPECIAL THANKS 11 committees to help with legal and fiduciary responsibilities for overseeing chapter goals, business operations and implementing the Society’s strategic plan. Jim Birchall, a CPA and certified financial planner who previously initiated our highly effective investment committee, continues as our treasurer, and Selma Searfoss, a social worker who chairs our financial assistance committee, continues as CALL TO ACTION our board secretary. Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life I hope that the next time you see someone with a ‘Board Member’ for many people with multiple sclerosis (MS). The National Multiple name tag at an event or program, you stop and say hello. We’d love Sclerosis Society’s medical advisors recommend that people with to meet you and hear how we can best serve our chapter and make MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage it stronger. symptoms. The National Multiple Sclerosis Society is committed to ensuring that people with MS have the information and quality care that they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National Multiple Sclerosis Society today at nationalMSsociety.org or 1.800. FIGHT MS to learn about ways to help manage multiple sclerosis John “Jack” Betkoski, III and about current research that may one day reveal a cure. Chairperson For Julie n typical MS fashion, Julie Bodnar now knows that her multiple sclerosis probably started soon after her first child, Gianna, was born – even though a diagno- Isis came much later in life when her daughter was seven and her second child, Julian, was five. “I was experiencing what I now know to be some com- mon symptoms of MS, a squeezing sensation in my torso, numbness in my left leg and all fingertips, and extreme fatigue,” Julie recalled. “I tried to understand and decipher what was happening to my mind and body, but doctors were giving me absurd responses. It wasn’t until 2002, when a family friend referred me to another doctor, who called for an MRI that I received an answer.” When Julie first heard the words, “You have MS,” she had no idea what it meant, or, what to expect. Both scared of the potential and slightly relieved to at least have an answer, Julie turned to her family for support. by Jacqueline Sembor “Of course my initial response was of the ‘Why me and Senior Communications Specialist what now?’ persuasion, but then you fight it,” continued Julie, who lives in Suffield with her family of four. “You move on. You set and strive to achieve goals. You continue planning for the future, even if that means taking into account your MS. And thankfully, my family is here to take the journey with me.” During the first year, Julie and her husband, Bogdan, 4 Mike Marques Photography Mike say that they were on different pages in learning dinners. “He told me, ‘Mom, I am going to sign up how to wade through all the implications of the for the Bike MS ride and raise money for you so we diagnosis. But, with strong communication, they can fight this together.’ I was unbelievably touched made advances and in 2004, Bogdan found a way to – there really are no words to describe the emotion.” demonstrate his commitment to Julie and the family The then Suffield High student had searched they created together. the National MS Society, Connecticut Chapter’s “I wanted to get involved, get more information website, inspired by a distant memory of standing at and do something to help my wife,” said Bogdan. “So a Bike MS finish line waiting for his father to come I signed up for Bike MS. I rode 75 miles in the rain, in from a daylong journey. Online, Julian discovered and even got a flat tire with just a few more miles to the many cycling opportunities and registered for the go. But, I rode on, because I was riding for my wife.” Connecticut Chapter’s Bike MS ride. It was the tangible way of him saying ‘I love you, “The meaningfulness of the day my dad rode must and we’re in this together,’ that brought tears to have stuck with me,” began Julian, now 18 and about Julie’s eyes. to graduate from Valley Forge Military Academy in “It meant the world to me when he rode,” she said. Wayne, Pennsylvania. “In 2012 I felt like it was time “I understood that fundraising was important, but for me to step up, too.” for me his ride was about us and our fight, together. That year, the young cyclist sported bib number Ever since then, we’ve been heading in the same two symbolizing his position as the second top fund- direction, always in sync.” raiser at the ride. Slowly and steadily Julian increased So, it was even more moving when years later for his presence at Bike MS – first, by doubling his Julie’s birthday, their 14-year-old son shared his own distance year over year, and then, by adding family Bike MS plans. members to his team. “I remember exactly how I felt when Julian shared “I always want to keep advancing; I want to set his present with me,” said Julie, noting that the sur- the bar higher each year,” explained Julian. “I’ll never prise was revealed over one of their coveted family stop trying.” 5 In fact, in 2015 Julian brought in reinforcements “To know that my kids think so much of me to in the form of his older sister. Gianna, a student at even consider riding in support of my MS makes me UConn’s School of Business, had also been looking the proudest mother,” said Julie, clearly touched at for a way to join the organization that was searching the thought. “They’re always present when it counts for a cure for her mother’s illness. the most.” “Not a day goes by that I don’t see my mother More than 6,500 Connecticut residents, like Julie fighting to stay strong, when it’s us who should be Bodnar, are affected by multiple sclerosis, a poten- staying strong for her,” said Gianna.