A Personal Journey to Wellness

WINTER 2015 ISSUE: 2015 Wrap-Up Page 13 CONNECTION

A PERSONAL JOURNEY TO WELLNESS

WINTER 2015

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Mike Marques Photography Your gift today brings us closer to a world free of MS tomorrow As the holidays approach, we ask ■ Information & Referrals that you support the National MS ■ Support Groups Society, Connecticut Chapter, this ■ Scholarships season. ■ Care Management With your help, the Connecticut ■ Financial Assistance Chapter can provide hope for those ■ Community Programs: living with MS. * Healthy Living As a non-profit organization, we * Research * Educational rely on charitable donations in * Newly Diagnosed order to continue funding critical * Pediatric MS & Young Adults research in our state and provide With MS services to those in need such as: * Family & Caregivers

Make a donation today at ctfightsMS.org NATIONAL MULTIPLE SCLEROSIS SOCIETY CHAIRMAN’S MESSAGE CONNECTICUT CHAPTER

TEL: 860.913.2550 CONNECTION On The Road to Wellness 1.800.FIGHT MS (344.4867) FAX: 860.761.2466 n October, the National MS Society announced a new mission www.ctfightsMS.org statement: “People affected by MS can live their best lives as we www.nationalmssociety.org stop MS in its tracks, restore what has been lost and end MS Iforever.” John W. “Jack” Betkoski, III Over the past few years, great strides have been made in the field chairperson, Board of Trustees of MS research focused on allowing people to live their best lives. In addition to groundbreaking medical and scientific advances, the Lisa Gerrol National MS Society and the medical community have developed President and CEO an acute awareness of how important ‘wellness’ is for those living 860.913.2550, ext. 52531 with a disability. The Society alone has funded 78 projects focusing on the areas of wellness in MS. COMMUNICATIONS Wellness is defined as the state or Cynthia Bidorini condition of being in good physical associate Vice President and mental health. This means not 860.913.2550, ext. 52530 only receiving the best physical care, DEVELOPMENT but also attending social programs such as support groups, MS Vaca- Kara Preston tion Week or MS Family Discovery Vice President Weekend and joining the online 860.913.2550, ext. 52533 community at MSConnection.org. OPERATIONS By staying involved, you’ll not only Loretta Sfiridis find support for the person living Vice President with MS, but support for all loved ones who have been affected by the John “Jack” Betkoski, III 860.913.2550, ext. 52525 disease, helping them feel empowered to help fight MS, too. PROGRAMS, SERVICES & ADVOCACY In the winter months, I understand that it is exponentially harder Lynette J. Coleman for someone who needs mobility assistance to get out and about, Vice President and that is why it is so imperative for us at the Society to do more. 860.913.2550, ext. 52538 In these pages you will find information about multiple aspects of wellness – including diet, exercise and mental health; but we can’t EDITOR IN CHIEF fit it all into one magazine. The Society has an entire section of its Jacqueline Sembor website dedicated to this topic at nationalMSsociety.org/Living- Well-With-MS, and I encourage you to explore all that it has to GRAPHIC DESIGN offer. Hal Wood We also need to continue to pledge our support of the Americans with Disabilities Act (ADA), which celebrated its 25th anniversary SPECIAL THANKS this past July, and work to promote access for those living with a disability. We need strong advocates to lend their voices to the cause so that we can continue the momentum we’ve gained in the past few years. It is my personal mission to help pave the way to a world free of CALL TO ACTION MS, but in the meantime, we need to keep taking steps, together, Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life on the road to wellness. for many people with multiple sclerosis (MS). The National Multiple Sclerosis Society’s medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage Jack 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. John “Jack” Betkoski, III If you or someone you know has MS, please contact the National Chairperson Multiple Sclerosis Society today at nationalMSsociety.org or 1.800. FIGHT MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. A Personal Journey To Wellness by Cynthia Bidorini, Associate Vice President, Communications

“I stay active and I don’t let MS define me. It’s such a small piece of who I am.” — Joy Pozefsky

4 n any given day, one will find Joy Pozefsky hiking Over 6,500 Connecticut residents, like Pozefsky, are with her dog, Okee, in the woods near her home affected by multiple sclerosis, a potentially debilitating in Clinton. For an hour or two the duo will disease affecting the central nervous system. The cause is Otraverse the terrain, take in the fresh air and exercise their unknown and there is currently no cure. Symptoms can bodies and minds. It’s a way of life for Pozefsky who, in include numbness in the limbs, difficulties with vision and 1991, was diagnosed with multiple sclerosis at the age of speech, stiffness, loss of mobility and, in some more severe 22. Her journey hasn’t been easy; in fact, it’s been a long, cases, total paralysis. The progress, severity and specific difficult road with plenty of ups and downs, but she’s symptoms of MS in any one person cannot be predicted. persevered by keeping a close eye on her personal health. Despite her health struggles, Pozefsky focused on living “As I think back, I can remember having symptoms her best life and carried out her passion to help children by as a young child,” began Pozefsky. “I would complain of working full-time as a fifth grade teacher. Unfortunately, numbness, particularly on my left side. In high school I the stress of her job led to an exacerbation that forced her also suffered from tingling and severe fatigue. My symp- to take a leave of absence. While she had every intention toms worsened in college when I began to experience of returning to teach, she ultimately made the decision to severe tremors, a sensitivity to hot and cold, and difficulty leave her job permanently. with memory, thinking and concentration. I would go to “I knew that what was most beneficial to my health was the doctor and be told, ‘You’re fine. You are just a Type not having the stress of full-time work,” explained Pozef- A, stressed-out college girl.’ I knew it was real, but no one sky. “Rather than step away completely from education, I believed me.” decided to volunteer at my church, teaching catechism. I Determined to find an answer for her illness, Pozefsky am strong in my faith, and I love being around children, met with a number of physicians, each unable to provide so it was the perfect fit for me.” an explanation, until she met with a neurologist in Strat- Pozefsky’s switch from a full-time career to part-time ford. He asked probing questions about her symptoms, volunteer work was just the first in a number of lifestyle performed a spinal tap and MRI, and finally made the changes. Always having an interest in health and nutri- diagnosis. tion, Pozefsky started reading and doing research on diet “While I was extremely upset when I was told I had MS, and exercise and its impact on the body. She began incor- a disease I never heard of, I was also relieved,” admitted porating yoga and hiking into her fitness routine. She also Pozefsky. “I had been describing the symptoms of MS for started taking supplements including Vitamin D3 and a years, but no one had made the connection.” probiotic. In 2003, she took her first step in modifying her Only one MS-approved medication was on the market diet by eliminating gluten. in the early 1990s. Because allotments were given to med- “The process of changing my diet happened gradually,” ical practices based on size, Pozefsky was referred to Yale explained Pozefsky. “I would eliminate a certain type of where her odds for being selected for the disease-modify- food and watch to see how it affected me. I was forever ing therapy would be higher. Her diagnosis was confirmed altering and tweaking the foods I consumed based on how and for the next 10 years she used betaseron but suffered they made me feel.” from flu-like symptoms.

For a person living with MS, the road to wellness involves more than treatment of the disease and its symptoms. Equally important are health promotion and prevention strategies, satisfying personal relationships, a strong support network, fulfilling work and leisure activities, a meaningful place in the community, and adequate attention to one’s inner self. — National MS Society Mike Marques Photography Mike

5 After nearly 12 years of personal research and modify- my left eye, through a spell of paralysis from the chest ing her diet, Pozefsky now believes she has it correct. She down, to now. But sometimes I think he feels helpless.” follows a strict diet that consists of organic grass-fed meats, Recently Todd found a very special and meaningful way organic berries and vegetables, nuts, seeds, full-fat coconut he could help. When Ojakian Commons, New England’s milk, coconut oil, fermented foods including kombucha first affordable, accessible, supportive housing community tea, wild fish, bone broth and liver. She also avoids certain for people with disabilities, coordinated by the National foods such as gluten, dairy, soy, grains, sugar, beans and MS Society, Connecticut Chapter, was being built, Todd legumes as well as dyes, preservatives, nitrates, GMOs and decided to make a donation to have the Resident Care artificial sweeteners. Office named in his wife’s honor. “I know this diet may seem extreme, and it’s definitely “Todd was so impressed with the vision of the Con- not for everyone, but it’s what works for me,” said Pozefsky, necticut Chapter’s President Lisa Gerrol and understood who admits to having a bit of dark chocolate and a glass of the need for such a residential community for people with red wine every once in a while. MS,” said Pozefsky. “He wanted to offer his support, not Pozefsky’s approach to wellness goes beyond a reg- only to me but to others living with MS.” imented diet; she believes in taking a holistic path to Supporting the National Multiple Sclerosis Society healing, nurturing the entire self – body, mind and spirit. has been a long-term commitment for the couple. When “Faith and prayer are a huge part of my healing,” stated Pozefsky was first diagnosed, she and Todd participated Pozefsky. “Without them I would not be where I am today. in Walk MS and raised $2,000. This past April marked I believe the first step in healing is to forgive – forgive those their 20th anniversary of fundraising. They, alongside who have hurt you and forgive yourself. People can carry family, friends and of course, Okee their dog, walked at guilt, hurt and shame in their lives. I’ve found that doing Hammonasset Beach State Park in Madison and raised so is dangerous and can contribute to sickness. It’s best to nearly $30,000, bringing their lifetime fundraising total find a friend and talk it out.” for Walk MS to well over $350,000. Pozefsky’s network of friends and family provide her “Fundraising is personal,” said Pozefsky. “It’s important with tremendous strength and support. Her husband for me to make a connection with the people whom I’m Todd, in particular, is her anchor. The two were high asking for financial support. I choose to send letters, hand- school sweethearts and together have faced the highs and sign each one, and include a self-addressed stamped enve- lows that can be brought on by a diagnosis of MS. lope. Each time I receive a donation, I am overwhelmed “Todd is my number one supporter,” expressed Pozef- by the generosity of others.” sky. “He’s been with me every step of the way – from the In 2016, Pozefsky will once again step out at Walk MS, time I was diagnosed, to the period when I lost vision in presented by Travelers, which will be held at nine sites

6 across Connecticut over two weekends: Saturday, April 16, and Sunday April 17, and again on Saturday, April 30, and Sunday, May 1. The event offers 2.5-mile and 5-mile routes. The fully accessible venues also feature finish line festivities and lunch, compliments of Subway Restaurants, Coca-Cola and Crystal Rock. In addition to supporting the MS Society, Pozefsky also helps others who are battling MS. She’ll often meet with women and men and tell them to never give up – and that there is hope. This type of outreach has not only affected the lives Pozefsky has touched, but her own life as well. One might even say the practice of compassion is the cornerstone of her own personal wellness. “When you take the focus off yourself, and place it on others, it helps you get through your own tough times,” said Pozefsky. Today, Pozefsky is doing quite well. She continues on her journey to personal wellness through diet, prayer, exercise and positive relationships. Although she struggles with neuropathy in her hands and feet, numbness on the left side of her body, as well as sensitivity to bright lights and loud noises, she doesn’t let it affect her daily life. “I try to see the glass half full rather than half empty,” said Pozefsky. “I stay active and I don’t let MS define me. It’s such a small piece of who I am.”

For more information or to register for the 2016 Walk MS, presented by Travelers, visit ctfightsMS.org. Mike Marques Photography Mike

7 An MS Research Revolution

RESEARCH ROUND-UP: NOVEMBER 2015

STOP RESTORE END

“What’s changing about MS in terms of how we treat following as most important to them: getting out and it is that we’re looking at the whole person, not just about, spending time with family and friends, managing one part of their life.” bills and expenses, and participating in clubs and civic and political events. Although people with MS want to engage – Timothy Cotzee, Ph.D., Chief Advocacy, Services in these activities, researchers found that three barriers in and Research Officer, National MS Society particular – lack of confidence, physical and mental impair- ments, and environmental factors – prevent people with MS Antioxidants And MS from doing so. Researchers also found that physical and mental im- Antioxidants are natural or man-made substances added to pairments, like MS fatigue and cognitive and walking many foods to block the action of ‘free radicals,’ which are problems, combined with environmental factors, like in- by-products of bodily processes that can cause tissue injury adequate social support and transportation issues, impede and promote immune attacks in MS. Researchers at Oregon a person’s confidence to manage MS symptoms and ulti- Health & Science University were able to demonstrate that mately prevent them from engaging in healthy behaviors the antioxidant MitoQ helped reduce symptoms in mice and meaningful activities. This lack of confidence may with a multiple sclerosis-like disease. also prevent people with MS from taking steps to prevent This antioxidant, developed more than a decade ago, secondary symptoms like depression, deconditioning from reduced inflammation and increased nerve-cell activity in lack of exercise, and poor nutrition or eating choices that the spinal cords of mice with the MS-like disease after just may result in obesity or diabetes. 14 days. Based on the results of this survey, Plow is testing an “The MitoQ significantly reduced inflammation of the intervention that would build confidence in individuals neurons and reduced demyelination,” said lead researcher P. living with MS. It would give the individual steps to take Hemachandra Reddy, Ph.D., Associate Scientist at Oregon to make changes and learn new skills to engage in activities Health & Science University’s Oregon National Primate that are meaningful to them. Research Center. “These results are really exciting. This Society’s Research Programs could be a new front in the fight against MS.” Reddy’s team will now move to understand the mecha- Advisory Committee Meets To nisms of MitoQ neuroprotection in different regions of the Advise On Research Funding brain and how MitoQ protects mitochondria within the In June, the Society’s Research Programs Advisory Com- brain cells. mittee (RPAC) made recommendations regarding funding Building Confidence Can for research projects and strategic initiatives. Based on this Help People With MS advice, the Society’s CEO approved an initial $14.7M in new multi-year funding commitments, including 22 research Researchers from Case Western Reserve University set out grants, nine health care delivery and policy contracts, and to find what prevents people with multiple sclerosis from five Illinois Lottery Pilot Awards. Discussion also included living fuller, healthier lives. key Society research advocacy issues, a wellness research Matthew Plow, Assistant Professor at the University’s strategy, the status of ongoing research initiatives, and input Frances Payne Bolton School of Nursing, and his team on setting research priorities for the Society’s Strategic Plan. asked 335 people with MS to rank the importance of Debra Frankel, the Society’s Vice President of Programs, 20 activities. Of these activities, participants ranked the Services, Advocacy and Research, provided an update on

8 activities. She noted that wellness is a priority in the Society’s 2016-2018 Strategic Plan and that additional work is underway. Nicholas LaRocca, Vice President of Healthcare Delivery and Policy Research, noted that the Society is developing a coordinated approach to wellness research. One concept is to develop a wellness research network that would provide infra- structure and collaboration to prioritize research and to serve as a training ground for wellness researchers. Kids With MS Who Exercise More Have Less Disease Activity In a small study of children with MS and those without MS who had experienced a single neurologic attack, moderate physical activity was associated with less fatigue, and strenuous activity was associated with fewer relapses and less disease activity seen on MRI brain scans. Investigators enrolled 31 patients between ages five and 18 with MS and 79 who had not been diagnosed with MS but who had experienced a single episode of neurologic symptoms. The team collected data on disease activity, duration of disease, and relapse rates. With the help of parents or a study coordinator, participants completed questionnaires on leisure-time exercise, including the frequency of strenuous, moderate, and mild physical activity. Clinical measures to assess fatigue and depression also were administered. Forty-five percent of the children with MS reported participating in strenuous physical activity, compared to 82 percent of children who had experienced one neurologic event. Those children who reported participating in moderate amounts of physical activity reported less fatigue. Those who reported strenuous physical activity had less disease activity on MRI scans and lower relapse rates. These results suggest an association between physical activity and the severity of MS in children, but further research needs to be done to determine if physical activity reduced disease activity or whether disease activity forced participants to reduce physical activity.

The National MS Society pursues all promising paths to uncover solutions for everyone with MS, wherever those opportunities may exist. For more information on these and other research advancements, go to nationalMSsociety.org. Symptom Management What Diet Is Right For You? ultiple sclerosis is a very dynamic condition, and as The first step is to eat natural foods while avoiding highly such, each person affected by the disease will need processed foods. This diet also emphasizes the intake of game to treat it a little differently. This carries through to meats and plant-based foods such as fruits, legumes, roots Mwhat a person with MS should be eating too. With physical and nuts. This diet is also high in fiber. changes come different dietary needs. Below are a few of A small, uncontrolled study on the Paleolithic diet’s effect the most popular diets and their observed effects, if any, in on people with secondary-progressive MS showed significant people living with MS. improvement in fatigue scores over a period of 12 months. However, the study also involved elements including exercise, Gluten-Free stretching, massage and meditation. A gluten-free diet is completely devoid of all wheat, barley, rye Swank Diet and triticales. This diet also must avoid cross-contamination with foods containing the material. It is important for people The Swank diet was used by Dr. Roy Swank to treat patients on a gluten-free diet to find substitutes to avoid significant with MS for many years. The diet is essentially a low-fat diet restrictions in caloric intake and nutritional deficiencies. focusing on reducing both saturated and unsaturated fats. There is no evidence for a role of the gluten-free diet in Guidelines for the diet include a saturated fat intake of 15 people with MS. Multiple studies suggest that people with grams or less per day, and an unsaturated fat and oil intake MS have the same prevalence of anti-gliadin and anti-TTG of less than 50 grams per day. No processed foods containing antibodies (antibodies elevated in Celiac disease) as healthy saturated fats should be consumed and dairy products should control groups. contain less than one percent fat. Whole grain cereals and pastas as well as two cups each of fruit and vegetables are McDougall Diet recommended. The McDougall diet is a low-fat, high-carbohydrate, mod- Swank reported the effects of his diet over a 20-year erate-sodium, vegan diet. It is based on the premise that the period in patients with MS. His findings suggested that the rich Western diet is the cause of several chronic diseases and diet reduced the occurrence of relapses, accumulation of aims at eliminating animal-based food and vegetable fats by disability and mortality. However, the study did not have a replacing them with low-fat, plant-based foods. control group. This diet includes a basic structure of complex carbohy- hile many different dietary strategies are being drates and starches including wheat, corn, rice, oats, barley, promoted for people with MS, currently there is quinoa, potatoes, sweet potatoes, beans, peas and lentils. no evidence to recommend any one in particular. Fresh fruits and colored vegetables can be added to the diet AlmostW all of the diets advocate avoiding highly processed in any quantity. Animal-derived foods and any oils are not food, foods with a high glycemic index, and food that is allowed. high in saturated fat. Most diets also recommend reducing No evidence exists to suggest this diet is effective in MS, consumption of fatty red meats and increasing consumption but a study from the McDougall center showed that seven of fruits and vegetables. days of the diet led to a reduction in weight, blood pressure Denise Nowack, R.D., Executive Vice President of Chap- and cholesterol. ter Programs and Services of the Southern California and Mediterranean Diet (MD) Nevada Chapter, suggests starting the day or week with a plan that practices simple meal management which can While there are various definitions of MD, they generally eliminate an extra trip to the grocery store. Arranging the share these components: a high intake of whole grains, kitchen so that all necessary items are close together makes vegetables, fruits, legumes, olive oil and fish; a low intake cooking simple and efficient. Buying pre-cut or prepackaged of saturated fats, red meat, poultry, dairy; and a moderate items can minimize cooking time by 10 to 15 minutes. This intake of red wine. will also preemptively stop unhealthy temptations such as There is currently no data for a role of the Mediterranean heating up frozen meals or eating out. diet in MS, but there is evidence for a beneficial effect in Finding the perfectly-balanced diet can seem daunting. type-two diabetes, cardiovascular disease prevention and However, proper nutrition is fairly simple and becomes more even cancer prevention. meaningful when it’s an aspect of one’s own health that can Paleolithic Diet be controlled. The Paleolithic diet is based on the idea that the human body It is important to consult your health care is poorly evolved to handle the modern diet and advocates professional to discuss changes to your diet. For for a switch to foods that would have been consumed by our more information on diet and nutrition, visit ancestors in a hunter-gatherer lifestyle. nationalMSsociety.org/diet.

10 November Is National Caregivers Month

Health and Love Participants Needed For Study On Caregivers Of Spouses/Partners with MS

t is common for someone with MS to be cared for by the different ways that caregivers try to handle the stress his or her spouse or partner, yet there is little research and challenges they might face.” about caregivers’ own physical and mental health Caregivers who have a spouse with multiple sclerosis Ineeds. This little detail is driving one Ph.D. candidate are invited to participate in this research study. The main and her new research study coming out of the University goal of this study is to examine how caregiving duties of Albany. and post-traumatic stress symptoms may interact with “I have always been interested in the interaction be- caregivers’ health and marital adjustment. tween physical health and mental health,” said Alison All surveys are submitted anonymously. Participants Rivers, a native of Tolland. do not need to share contact “When I began graduate information or location to school, I immediately started take part. After participants my dissertation research ex- complete the survey, however, ploring mental health in the they will earn an entry into face of a chronic illness. I a drawing for one of five $75 chose to narrow in on MS gift cards. The survey and because of how unpredictable raffle drawing are being kept and versatile the disease can completely separate, so one be. I started off studying will not be linked in any way MS because of my academic to the other. interests, but by now, I am “I want to shine some light studying MS because of per- on these dedicated individu- sonal interests, too.” als,” Rivers shared. “I feel lucky Rivers graduated from to be a part of the MS commu- Fairfield University with a nity through my research and degree in psychology in 2008 I am committed to trying to before beginning her studies help that community through at the University at Albany, what we learn together.” State University of New York. Currently, she is a Ph.D. candidate in clinical psychology. She recently completed her first research study on caregivers of spouses/partners with MS. Now, Rivers is ac- tively recruiting participants for her second research study on spousal/partner caregivers of people living with MS. The study is in the form of a Alison Rivers 40-minute survey, with limited open-ended questions. Rivers will continue to accept participants through To participate in this study online, please December 31, 2015. go to https://www.surveymonkey.com/s/ “Before I developed my research questions, I wanted MScaregiverstwo. To request a hard copy of to get to know the MS community, so I spent a lot of this survey along with a self-addressed, stamped time talking with the passionate people who work for envelope, please contact the Connecticut Chapter. the National MS Society and conducted a few pilot in- For more on support for caregivers, search terviews,” she explained. “I was struck with how strong ‘Family Matters’ on nationalMSsociety.org. and resilient some caregivers can be. I wanted to learn

11 Two Options For Runners To ‘Finish MS’

hen Windsor resident Stephanie Fami- Registration for the April 24, 2016 Ion Bank ano went out for her first run 10 years Cheshire Half-Marathon will open at the be- ago, it was a lot shorter than a half-mar- ginning of the new year. Team members are athon.W But, as sore as the jog left her, she knew that required to reach a fundraising minimum of pushing herself felt good. Today, Famiano has eight $250 before receiving their free race registration marathons under her belt and is using her passion and bib. Last year $25,000 was raised for the to help fund a cause near and dear to her heart. Connecticut Chapter. “My husband Joe and I were high school sweet- Registration for the Hartford Marathon hearts,” said Famiano. “I was shocked when in 2013 opens each year in the spring and the race will we learned he had multiple sclerosis.” occur Columbus Day Weekend. Registration for While Joe’s MS symptoms have been manage- this event is on a sliding scale. able, the couple quickly learned just how expensive living with a chronic illness can be. “I couldn’t help but take notice of all the medical bills and began to realize how fortunate we were to have good insurance that helped us along the way,” Famiano said. “Then I started to think of all the people who have MS who are in need of financial assistance and who need help managing their disease, so I decided to start running for the cause.” With a father who is an Ironman triathlete, racing was in Famiano’s blood. After her first marathon in 2007, she was hooked and has been traveling the Northeast to run in any race she can – marathons, half-marathons and even 5ks. After her husband’s Lisa Gerrol with Ion Bank President, diagnosis, she decided to ask for sponsorships and Charles J. Boulier III raised funds through her running and donated it to the National MS Society, Connecticut Chapter. To date, Famiano has raised more than $4,000 for the fight against MS through her running campaign, and in 2014 served as the Chapter’s spokesperson when it signed on as an official char- ity partner with the Ion Bank Half Marathon and 5k. In support of dedicated runners like her, the Connecticut Chapter has also partnered with the Eversource Hartford Marathon, Half-Marathon and 5k in the fall. Runners like Famiano can now choose to run on ‘Team Finish MS’ for either of these events and use their strides to help move us closer to a world free of MS.

For more information on how to participate in either of these running events, visit ctfightsMS.org or call 860.913.2550.

12 n 2015, nearly 10,000 walkers stepped out at 11 walk sites across the state of IConnecticut to collectively make more than a $1.35 million mark against MS. WTNH News 8 evening anchor Darren Kramer served as grand marshal, leading the walk in Madison. The Connecticut Chapter would like to thank presenting sponsor Travelers for their continued support. Other sponsors included Enterprise, The Reardon Law Firm, Assa Abloy, 4AllPromos, 4AllGifts, Advanced Wheels, CCI, Genzyme, Unilever, All American Waste, Harte Auto Group, Lydall, Mallinckrodt Pharmaceuticals, and U.S.A. Hauling & Recycling Inc. We would also like to recognize Walk MS national sponsor Novartis Pharmaceuticals; our in-kind partners, Subway Restaurants, Coca-Cola, and Crystal Rock; and media partners WTNH News 8, WUVN Univision, 95.9 THE FOX, 99.1 PLR, 102.9 The Whale, Star 99.9, The River 105.9, 97.7 WCTY, The Cheshire Herald, Fairfield/Westport Minuteman, New Haven Register and Shoreline Times.

Walk Site Top Teams Cheshire – Frank’s Entourage Captain Frank Monteiro – $104,995 East Hartford – Team JENGA Captain Lois Gottlieb – $19,779 Enfield – Hoopster’s Boosters Captain Karen Hooper – $3,591 Fairfield – Flutterby’s Captains Pam Lind & Alicia Teitelbaum – $21,172 Litchfield – The Marching McGraths Captain Patrick McGrath – $11,215 Madison – Joanie’s Ponies Captain Joan Sidney – $17,790 Simsbury – The MS Kateers Captains Shannon O’Donnell, Kelly Sterling, Maggie Cosgrove – $9,441 Stamford – Team Burger Captain Alec Burger – $37,290 Waterford – Team Heather Captain Heather Rumm – $14,338 West Hartford – Travelers Walk Team Captain Todd Bateson – $60,782 West Haven – The Neighborly Walkers Captains Eric & Civianne Bloch – $8,556 Top 10 Fundraisers Frank Monteiro $ 86,380 Alec Burger $ 55,445 Joy Pozefsky $ 29,730 Scott Bengston $ 28,908 Chris Getman $ 22,991 Stephen Borsy $ 17,420 Joan Sidney $ 16,925 Don Walsh $ 14,355 Alicia Teitelbaum $ 12,060 Kacey Sullivan $ 11,695

(All totals as of September 16, 2015) 13 early 600 cyclists shifted gears to pedal up to 100 miles and raised more than $518,000 Nduring the 2015 Praxair Bike MS, presented by Louis Dreyfus Commodities. The event took place Sunday, June 7, in Windsor and Sunday, June 14, in Westport. The Connecticut Chapter thanks title sponsor Praxair and presenting sponsor Louis Dreyfus Commodities for their generosity. Other sponsors included Griffin Land, who also generously served as host to the Windsor ride; Mitchell Auto Group; CVS/specialty and Xerox. Media sponsors included Serendipity Magazine, Lite 100.5 WRCH and WTNH News 8. Top Teams Windsor – Maag Wheels Captain Billy Maag – $71,125 Westport – Team BTG Pactual Captain Larry Greenhall – $27,660

Top 10 Fundraisers Evan Flaschen $ 52,999 John Formica $ 33,255 Larry Greenhall $ 22,205 Peter Porrino $ 14,700 Tim Lescalleet $ 10,730 Patrick Smith $ 10,335 Ray Martin $ 10,280 Mike Stacy $ 9,008 Mark Homan $ 6,005 Cornelius Grealy $ 3,970

14 2014 Run MS 5k

ast fall, 380 runners turned out for the Connecticut LChapter’s Run MS 5k at Rentschler Field in East Hartford on Saturday, Oct. 25, 2014. The event raised over $25,000. The Connecticut Chapter thanks Run MS sponsor Acorda Therapeutics for its generous support. Top Fundraiser: Jacqueline Sembor $1,253

2015 Ion Bank Cheshire Half Marathon and 5k

n April, 19 National MS Society runners Iparticipated in the Ion Bank Cheshire Half Marathon and 5k. In total, the event raised $25,000 for the Connecticut Chapter. Top Fundraiser: Dante Gaudio $925

MuckFest MS

uckFest MS participants from the Connecticut MChapter were able to join one of two events in Boston or New Jersey. In 2015, 245 participants went to Boston, raising $23,792 while 81 muckers travelled to New Jersey and raised $7,480. Top Fundraiser: Joshua Harris $2,254

Thank you to the more than 950 volunteers who joined us to support our events this year! 15 Thursday, November 19, 2015 MS Dinner of Champions – Stamford Monday, November 30, 2015 Health Insurance Workshop – Milford Wednesday, December 2, 2015 Health Insurance Workshop – Wethersfield Sunday, March 6, 2016 MS Research Program – Rocky Hill Save Tuesday, March 29, 2016 MS Action Day – Hartford Saturday, April 16, 2016 Walk MS – Fairfield the Sunday, April 17, 2016 Walk MS – Cheshire Walk MS – Simsbury Walk MS – Waterford Walk MS – West Hartford D a te ! Sunday, April 24, 2016 Cheshire Ion Bank Half Marathon Saturday, April 30, 2016 Upcoming Walk MS – East Hartford Sunday, May 1, 2016 Connecticut Walk MS – Litchfield Walk MS – Stamford Chapter Events Walk MS – West Haven Monday, May 16, 2016 at a Glance Golf MS – North Stonington Sunday, June 5, 2016 Bike MS – Windsor Sunday, June 12, 2016 Bike MS – Norwalk Sunday, June 19 – Friday, June 24 MS Vacation Week – Hebron Visit our calendar at ctfightsMS.org for a complete list of local events and programs.

16 Wallingford Man Hopes To Help Turn The Tide On MS

n a solo effort to spread awareness and raise funds for for paddling with his drive multiple sclerosis, this fall one Wallingford man took to help support his moth- his journey out to sea. er’s ongoing battle with I“I set out from Rocky Neck State Park to kayak MS and set up a Do It 20 miles across Long Island Sound to Orient Point, Yourself (DIY) fundrais- Long Island and back,” shared Andrew Pires, age 27. ing page through the “I knew the journey would be long and difficult, but Connecticut Chapter’s when put into perspective, I only had to endure for website. one day. Millions of people struggle with the effects “I was due for another of MS for years with no end in sight.” fundraiser,” he said. “I participated in a half-marathon Two of those people affected by multiple sclerosis to raise additional funds, but if I go too long without are very dear to Pires – his mother, Carol Ann was doing something to support the fight against MS, I get diagnosed in 2006, and his Uncle Tommy was diag- this feeling of helplessness. I’m the type of guy who will nosed in 1966. take on anything with the mindset of getting it done, but “I was diagnosed the year Andrew graduated from high there is nothing I can do to help my mother rid her body of school,” remembered Carol Ann. “It started with a bout of MS. Raising money is what I can do to contribute to her fight optic neuritis. Ironically, I had just seen my eye doctor and and the fight of everyone else living with MS.” nothing had been wrong. When I went back, he immedi- Pires set a fundraising goal of $5,000, and reached out ately suspected MS and advised me to schedule an MRI.” to his group of supportive friends, family and coworkers to Fortunately, Carol Ann sponsor his 20-mile trip. But, Pires admitted, money won’t began a course with a dis- do the hard work for him– he has to earn it. ease-modifying therapy “My mother and I share a belief that a person can ac- and has not experienced complish anything when they possess a determined mind; any new lesions. however, I felt completely helpless when she was diagnosed,” “I really take care of said Pires. “I raise funds because I cannot stand by and do myself and try to stay ac- nothing to help.” tive,” she continued. “But, Pires’s journey is an example of DIY fundraising. The I do rest when I need it. National MS Society encourages individuals to use their It’s important to listen talents and interests to raise funds. With endless possi- when your body tells you bilities, anyone can find a way to get involved in the fight it’s tired. I respect my MS, against MS. but I refuse to let it rule “Every dollar counts in our mission to create a world free the way I live.” of MS,” said Community Outreach Coordinator and Man- In contrast to her ager of DIY events Kate Moore of the Connecticut Chapter. brother, Carol Ann felt fortunate to have been diagnosed “Just by hosting an event or party, people have raised more at a time when there were so many treatment options and than $240,000 through DIY fundraising in 2015. And MS specialists to ensure that those living with MS could there’s no right or wrong way to do it.” find a way to live their best lives. Funds raised through DIY events ensure ongoing scientific “I unfortunately never got to meet my uncle because he research to find a cure and provide for the continuation of lost his battle in 1984, four years before I was born,” said vital programs and services offered by the chapter to Con- Pires. “But, my mother is a true fighter and never plans on necticut residents affected by MS. giving in to this diease.” Examples of past DIY fundraisers include shopping Pires has supported his mother’s ongoing battle by vendor events, beer tastings, pig roasts, golf tournaments, participating in many National MS Society events, sporting tournaments, scavenger hunts, comedy nights, rose including Walk MS, Muck Fest MS, and Run MS. sales, concerts, motorcycle rides, poker tournaments, car But, for his most recent challenge, Pires did all the shows, art shows, chili cook-offs, pub crawls and more. organizing himself. “I’m proud to say that my mother has the resiliency “After injuring my shoulder and undergoing mul- to take on MS,” said Pires. “And I am hopeful that my tiple surgeries to fix it properly, my physical therapist personal efforts can help her beat it.” recommended kayaking as a new hobby,” he shared. For more information on organizing your own “That was a few years ago, and now I find myself out DIY event, contact Kate Moore at 860.913.2550 on the water three or four times a week when my or visit nationalMSsociety.org/DIY. To make a work and study schedules allow for it.” donation and support Pires’s journey, visit: http:// Recently, Pires, an Audit Associate at Whittlesey tinyurl.com/DeterminedMind. & Hadley, P.C. in Hartford, decided to pair his passion

17 Funding A Dream Using A Scholarship To Give Back

aura Manes, of Rocky Hill, is a fighter. She first MS Society scholarship application, when with three had to face the challenge of going back to school semesters left until graduation, she ran out of student as an adult learner, but she did so to pursue loans. Lher dream of becoming a nurse. She put in 18-hour The National MS Society established its scholarship days to keep her full-time job while going through a program 12 years ago for students who either have demanding program, but she did it because she wanted MS or a parent living with MS. The program imme- to continue to support the beautiful family she and her diately became a source of encouragement for families husband, Derek, were building. And she kept at it, even concerned that MS might put college out of reach. In when a chronic, debilitating disease threatened to push 2015, the National MS Society made adjustments to her off course. the scholarship applicant criteria, and for the first time “When my symptoms first started on a drive home, began accepting applications for all students, not just I thought maybe it was just my allergy to shellfish, so I incoming college freshmen. This year, more than $1.2 continued on my way and ultimately went to bed with a tingly tongue,” the determined student recalled. “In the morning, half of my face was numb, but I also had a practicum that day so I didn’t go to the hospital. You can’t just reschedule a practicum, after all.” After the exam, Manes did finally make it to the hospital and underwent several tests. The doctors had many suspicions, including Bell’s palsy or perhaps a stroke, but it was ultimately an MRI that discovered lesions in her brain and brought about a diagnosis of multiple sclerosis. “Ironically, I began my journey to become a nurse in January of 2011, which was one year before I received my diagnosis,” said Manes. “While I very easily could have thrown in the towel, I knew that all the hard work I had put in warranted a fighting chance. So I decided to keep plowing ahead.” In fact, there were many times when Manes pushed through the pain and fatigue of her MS to ensure that her pursuit of becoming a nurse herself was not in vain. “It certainly was a rough time, and I initially clammed up and didn’t want to talk to anyone about it,” she said. “But then my husband urged me to get in touch with my cousin’s wife, who also has MS, and she told me just what I needed to hear: ‘Look at me, your life isn’t going to end because you’ve been diagnosed with MS. Just do what your doctors tell you.’ So that’s what I’ve done.” million in awards were presented to over 800 new and Manes has continued her demanding lifestyle. She renewal recipients nationwide, including adult learners has continued to work at Whelen Engineering, as she like Manes. has for 19 years. She dedicates time to be there for her “I was overjoyed when I got a letter notifying me that 15-year-old son, Kevin, even when the day doesn’t seem I would be receiving aid,” she said. “My ultimate goal to have enough hours. And of course, she’s taking more is to enter the field of neurology so I can help others classes to finish her degree in nursing, which she will affected by MS and other neurological diseases. I want receive on December 17th from Goodwin College. But to be an example for others, like my cousin was to me, she did ultimately accept a little bit of help. that receiving this diagnosis does not mean that your “I am certainly not the kind of person to ask for help, dreams have to end.” but I’m running out of options and have responsibili- Applications are evaluated on financial need, ac- ties, so I’m asking now,” she wrote in her 2015 National ademic record, leadership and volunteer activities, a

18 statement of educational and career goals, and letters of recommendation. Applicants are also asked to provide MS Scholarships a personal statement describing the impact MS has had on their life. Scholarships range from $1,000 to $3,000 Do You Qualify? and recipients are eligible to reapply each year to be con- Individuals who have MS or who sidered for a future award. The program is competitive and awards are not guaranteed. have a parent with MS are eligible “For the Manes family and others affected by MS to apply as long as they meet all of across the country, there are very few known resources the following eligibility criteria: of scholarship assistance specially targeted for these families,” said Lisa Gerrol, Connecticut Chapter Pres- ∫ Will be enrolled in an undergraduate ident and CEO. “MS shouldn’t stand in the way of an course of study at an accredited two- or education, and we are hopeful this program will give families some relief.” four-year college, university or vocational- The National MS Society is currently accepting technical school in the U.S. or a U.S. scholarship applications for the 2016-17 academic year. territory for the 2016-17 academic year. For the 2016 program, applications must be submitted online by January 15, 2016, and supporting docu- ∫ Will be enrolled in at least six credit ments received no later than January 31, 2016 to the address listed on the application instructions. hours per semester in coursework leading to a degree, license or certificate.

∫ Applicants must be United States “…this diagnosis citizens or legal residents living in does not mean the U.S. or a U.S. territory.

that your dreams PAID ADVERTISEMENT have to end.”

“I don’t know how people do this alone and I am so thankful for all the support that has come my way,” said Manes. “I just think about how here I am, a nursing student, and there’s someone out there right now that I don’t even know, that I’m going to help one day. I think of all the people I could have helped already if I chose this career path earlier, but helping just one in the future is good enough for me.” In 2015, the Connecticut Chapter was able to fund a total of 30 scholarships thanks to the support of David and Julie Carter, Joyce and Peter Wade, Steve and Cyra Borsy, Michael and Nancy Cummings, the Monteiro family, the Jo-Ann Concilio MS Memorial Fund and the Hayley’s Hope & Michaela’s Miracle MS Memorial Fund. To make a contribution to the fund, please visit nationalMSsociety.org/HHMMfund.

For complete details and frequently asked questions about 2016-17 school year scholarships, visit nationalMSsociety.org/ scholarships.

19 Congratulations to our local inductees to the National MS Society’s 2015 Volunteer Hall Of Fame

Larry Greenhall variety of roles with the Society, including MS Activist. “I Larry Greenhall has created a lasting received a Society email in 2014 listing the legislative pri- legacy which directly impacts the orities for the year with a request for feedback, and it was at Connecticut Chapter as a whole. He that point that I shared my frustrations about my inability is a current member of the Chapter’s as a private practitioner to prescribe off-label drugs which Board. Greenhall has carried his lead- I knew to be effective treatments.” Guarnaccia banded ership to the Chapter’s mass-market together with a small group of volunteers who, within a sphere through his creation of Bike MS year, pushed through a change to the Connecticut General corporate teams at each of his previous Statutes to broaden coverage for off-label medications. and current employers, appointing Albert Lo, M.D., Ph.D. team leaders to maintain company engagement. Addition- ally, Greenhall’s involvement at the bike tour has garnered Dr. Lo has been a member of the significant and actionable MS awareness by enlightening Connecticut Chapter, dating back hundreds of people who otherwise do not have a con- to his early career at Yale Univer- nection to the disease. In 2013, the combined historical sity Department of Neurology and fundraising of his teams reached the $1 million mark. In the local VA Hospital as a treating addition, Greenhall gives generously to the MS Dinner of neurologist, before he transitioned Champions and has hosted a donor reception at his home. to Connecticut’s first Comprehen- sive MS Care facility, the Mandell Jeffrey Gross, M.D. Center. Annually, he presents at local Dr. Gross first encountered multiple constituent educational programs as well as professional sclerosis as a young boy growing up symposia. Lo is also an active member of the Health in the 1950s but at the time was told Care Advisory Committee where he serves as the liaison not to ask about his neighbor, who between the research community and clinicians. He is never came out of her home because renowned for his dedication to bridging the gap between she was living with MS. He learned scientific research and real and tangible treatments and more about MS while attending med- therapy offered in MS care. Lo also contributes significant ical school, but couldn’t see himself time and talents to serving on high-level international becoming a specialist for a disease volunteer committees convened to determine the strategic without a cure. Then, after entering direction of MS research. Most recently, he was part of the private practice in the 1980s in Connecticut, it seems that team that helped drive the Society’s wellness initiatives. MS found Gross again. He began speaking at MS support Joel Pachter, Ph.D. groups and was invited to join the local Health Care Advi- sory Committee and Board of Trustees. More recently, he For more than 20 years, Dr. Pachter also joined the Financial Assistance Committee, Govern- has been a Society-funded researcher ment Relations Committee and MS Dinner of Champions and is recognized by the healthcare Committee. Through it all, Gross continues to lead with community as someone who has a a spirit of inclusion and willingness to work behind the wealth of knowledge on MS-related scenes. topics and is counted on to help raise awareness for the disease and Joseph Guarnaccia, M.D. the Society’s work in the greater Dr. Guarnaccia first joined the MS community. He is one of a few re- movement when he signed on as searchers that the Society has been able to work with for Director of the Yale MS Center in more than two decades to conduct basic bench work and to the late 1990s. In 2000 he opened mentor others. As a senior investigator, his leadership is also his own clinic, The MS Treatment demonstrated in the growing number of MS only projects Center at Griffin Hospital and be- as well as projects that will help advance MS research at the came involved with the Connecti- University of Connecticut. To date, more than $3 million cut Chapter’s Health Care Advisory in Society-funded projects and more than $1.2 million in Committee. More recently he ex- state funded research are associated with Pachter and his panded his volunteerism through a colleagues. These five outstanding volunteers were recognized at the 2015 Society Leadership Conference, November 5-7 in Fort Worth, TX. The conference brought together volunteer and staff leaders from across the country to celebrate, motivate, inspire, educate, share and network so we can be better equipped for the important work still ahead to end MS. 20 Activist In Action Our Newest District Activist Leader Could Be You!

hen Pam Greenberg was diagnosed with multiple n conducting in-district legislative visits; sclerosis in 2004, she was in denial. However, she n completing on-going training; quickly became involved with the Connecticut n and finally, raising awareness of MS policy issues by ChapterW and has been making a difference for all people utilizing multiple media strategies. living with MS. “After corresponding with the National MS Society, Connecticut Chapter, and volunteering in 2006 at the Walk MS event in Manchester, I developed a desire to become more involved,” she said. “I wanted to use my voice to drive change.” Greenberg found her voice when she was recruited by Susan Raimondo, the Connecticut Chapter’s Senior Director of Advocacy and Programs, to join the Gov- ernment Relations Committee. Through phone calls, letters and volunteering at the Chapter’s State MS Action Day at the capitol, Greenberg was able to join a fleet of people who regularly correspond and meet with legislators, emphasizing that the needs of those living with MS have never been greater. Then, in 2014, Greenberg was chosen by the Connecticut Chapter for its new volunteer position of District Activist Leader. Now, the Connecticut Chapter is looking for more driven volunteers like Greenberg to serve as District Activist Lead- Leaders may also be asked to travel to the Society’s annual ers for U.S. Congressional Districts three and five in our Public Policy Conference in Washington D.C. There, more state. District Activist Leaders are responsible and reliable than 400 activists from across the country participate in high-level volunteers who can communicate respectfully training and briefings on the important federal legislative and represent the MS movement position on local, state and priorities of the MS Society. federal issues. These leaders should have a passion for politics, Greenberg educated local legislators about needs in the be well-versed in issues impacting people with MS, be com- community, and did so compellingly, often leaving lasting fortable with public speaking and have strong interpersonal, impressions on those she met. She found a purpose for her leadership and organizational skills. diagnosis, and you can too. “MS is a complex disease that is often misunderstood,” The District Activist Leader program was developed to iden- said Susan Raimondo. “As we work to create awareness tify high-level volunteers to build relationships with elected of MS, especially among public officials, we need articu- officials. Responsibilities of District Activist Leaders include: late, passionate individuals who can be leaders in the MS movement and who communicate and engage with elected n collaborating with the State’s Government Relations officials and their staff. District Activist Leaders help the MS Committee; Society further our public policy agenda by serving as strong n attending MS Action Days and/or the Public Policy communicators.” Conference; As volunteers and advocates for the National MS Society, n receiving elected official’s communications; monitoring District Activist Leaders help all those affected by MS in our and tracking the elected official’s district activities and state live their best possible lives, even in the face of MS. public events; For more information on becoming a District n attending town hall meetings and other public forums Activist Leader, visit nationalMSsociety.org and to engage on issues that impact people affected by MS; search ‘Advocate for Change’ or contact Susan n helping to build the MS movement’s profile of elected Raimondo at 860.913.2550 or email officials by providing key biographical data and infor- [email protected]. mation to Society government relations staff;

21 Please call group leaders prior to attending a meeting as dates and times are subject to change and meetings may be moved due to holidays. The contact SUPPORT GROUPS information provided should not be used for solicitation purposes. Additional support can be found online at msconnection.org.

BRANFORD MIDDLETOWN TRUMBULL 3rd Wednesday, 5:30 p.m. 2nd Saturday, 1 p.m. 3rd Tuesday, 6:30 to 8 p.m. James Blackstone Memorial Library Wadsworth Glen, 30 Boston Road Trumbull Library, 33 Quality Street 758 Main Street Mary at 860.828.5240 Amy Watkins at 800.344.4867 Cheryl at 203.535.3053

MILFORD VERNON COLCHESTER 2nd Saturday, 1:30 p.m. 1st Friday, 7 p.m. 2nd Saturday, 10:30 a.m. to noon Milford Hospital, 300 Seaside Avenue Vernon Police Department Community Room 59 Harrington Court Debbie at 203.878.6661 725 Hartford Turnpike Peggie at 860.267.9759 John at 203.874.1225 Patty at 860.874.3220

DANBURY NEWINGTON WATERBURY 2nd Wednesday, 7 to 8:30 p.m. 2nd Thursday, 12 to 2 p.m. 3rd Monday, 6 p.m. Main Street Rehab Center, 235 Main Street Newington Senior and Disabled Center Village at East Farms, 180 Scott Road Amy Watkins at 800.344.4867 120 Cedar Street Jackie at 203.753.2708 Professionally facilitated Charlie at 860.667.1314 or Tom at 860.236.2751 WATERBURY DANBURY Caregivers NEW LONDON 3rd Wednesday, 5:30 p.m. 2nd Wednesday, 7 to 8:30 p.m. 4th Wednesday, 6:30 p.m. Joseph Jaynes Building, 77-79 Bishop Street Main Street Rehab Center, 235 Main Street Lawrence & Memorial Hospital Karen at 203.754.9656 Joe at 203.264.2252 365 Montauk Avenue Eileen at 860.442.0711, ext. 4990 Professionally facilitated WEST HAVEN DERBY Every Thursday, 11:15 a.m. 3rd Wednesday, 4:30 to 5:30 p.m. West Haven VA Hospital, Building 2, 3rd floor Griffin Hospital, 130 Division Street NORWALK 950 Campbell Avenue Lisa at 203.231.4716 1st Friday, 1 to 3 p.m. Mary Lou at 203.932.5711, ext. 2276 South Norwalk Library, 10 Washington Street Open to veterans only. Professionally facilitated. Erica at 203.984.7027 GRANBY 2nd & 4th Monday, 1 to 3 p.m. NORWALK Granby Senior Center 15 North Granby Road 1st & 3rd Tuesday, 1 to 3 p.m. Meaghan at 860.428.2463 Triangle Community Center, 618 West Avenue Ed at 203.807.0194 Group for LGBT people and their allies with MS GREENWICH 2nd Saturday, 1 to 3 p.m. PLAINVILLE St. Paul Church, 84 Sherwood Ave. Paula at 203.629.7053 3rd Monday, 7 to 9 p.m. Wheeler Clinic, 91 Northwest Drive Irma at 860.793.9272 HAMDEN 3rd Saturday, 11 a.m. SHELTON The Playwright, 1232 Whitney Avenue Paul at 203.213.5466 2nd Monday, 2 to 3:30 p.m. Plumb Library, 65 Wooster Street Amy Watkins at 800.344.4867 HARTFORD Be sure to visit www.ctfightsMS.org Last Tuesday, 6 p.m. STORRS and click on the “Services and Support” Mandell Center, 490 Blue Hills Avenue Stacy at 860.502.5973 2nd Tuesday, 6:30 p.m. button to find out the most up-to-date Ashley at 203.583.0169 Mansfield Senior Center, 303 Maple Road Joan at 860.429.7271 information on the vital programs and services offered by the Connecticut MANCHESTER TORRINGTON 1st Monday, 10 a.m. Chapter. Presbyterian Church of Manchester 2nd Wednesday, 7 to 8:30 p.m. 394 Lydall Street VNS of Connecticut, 65 Commercial Blvd. Karen at 860.746.4247 or Amy Watkins at 800.344.4867 Nancy at 860.742.5155 Professionally facilitated 22 café Computer Outreach Program The National MS Society’s Computer Outreach Program provides computers to those who con are living with MS and are restricted to their own homes, long-term care facilities or are emotionally isolated. This unique program enables individuals to remain connected to leche the world via social media and online support Grab your coffee, sit back, and listen networks, as well as have an avenue to educate to the experiences of other people themselves about MS. living with MS! Café Con Leche is a free monthly telephone group offered by For further information on the Computer the National MS Society. The group Outreach Program, please contact Abigail Vacca at 860.913.2550, ext. 52522, or is conducted in Spanish once every [email protected]. month. We invite Hispanics/Latinos with MS to participate in calls which will occur on Tuesdays, Nov. 10, Dec. 8, Jan. 12 and Feb. 9 from 2 to 3:30 p.m.

Topics will focus on areas of interest for PAID ADVERTISEMENT people living with MS and experts from various areas of specialization in MS will join the calls.

For more information or to register, call 1.800.344.4867, option 3.

Get Connected Sign up to receive society emails by visiting nationalMSsociety.org/signup Talk to an MS Navigator! Call us at 800.344.4867 Join the MS Activist Network at nationalMSsociety.org and use keywords “Advocate for Change” Get Connected at MSconnection.org Get your Social Security questions answered by emailing [email protected]

23 What you need to know about PML

by Jacqueline Sembor, Senior Communications Specialist n the multiple sclerosis community, ‘PML’ can be Because multiple sclerosis is an autoimmune a concern for individuals on certain disease-mod- disease, some of the treatment options available are ifying therapies. And while the benefits of these effectivebecause they are able to suppress the immune Itherapies may far outweigh the risks, it is important system. Unfortunately, if someone also has been that people are well-informed. previously infected with JCV they have increased As the treatment of multiple sclerosis continues to vulnerability to PML because the virus is never advance, important novel safety issues are emerging. cleared from the body. While an intact immune “PML” is a serious complication of some of the newer system easily controls the virus, a weakened immune MS therapies. system may not be able to contain the virus. This may eventually lead to the development of PML. What IS PML? The diverse symptoms of PML can be very similar Progressive multifocal Leukoencephalopathy (PML) to MS symptoms. Interestingly, the target cell in is a serious opportunistic infection of the central the brain for the JC virus is the same cell that forms nervous system. This brain infection is caused by the myelin, the target tissue in MS. For this reason, John Cunningham virus (JCV) in the setting of a individuals with MS should be alert to any new or weakened immune system. worsening symptoms and report them promptly to Interestingly, JCV infection, named for the patient their health care provider. from whose tissue the virus was first successfully cul- Before administering a course of treatment with tured, is very common. It is estimated to occur in more an immune-suppressing medication to treat MS, than three-quarters of Americans. A healthy person health care providers will screen for the presence of carrying the virus will never have any symptoms or the JC virus. If a doctor suspects that a patient may illness from the virus. However, in people who are im- have PML, they may conduct an MRI to detect any mune-deficient, the virus can progress to PML. This changes in the brain, and assess clinical symptoms. is exactly what can occur in people who have MS and To confirm a diagnosis of PML a lumbar puncture are taking certain immuno-suppressant medications. or spinal tap is conducted to detect the presence of PML typically will present as a sub-acute illness the virus in spinal fluid. with evolving multifocal neurologic deficits over days In 2012, the FDA approved the Stratify JCV An- and weeks. Initial symptoms of PML may include tibody ELISA test. This JC virus blood test can de- loss of language ability, changes in personality, dete- termine if a person has been infected with the virus. rioration of memory, loss of coordination or clumsi- A positive test does not mean a person will develop ness, vision impairment, headaches and seizures. As PML. Studies indicate that only JC virus-positive the disease progresses, symptoms become worse and individuals have the potential to develop PML. severe disability or death can result. Together, a patient and their doctor should deter- One important observation made by scientists mine how often a test for JC virus antibodies should is that PML does not typically affect common MS be administered. If infection occurs, more intensive targets such as the optic nerve or the spinal cord, but surveillance or discontinuation of treatment may be it does target the brain. The risk of PML rises with appropriate. both duration of immunosuppressant treatment and the number of immunosuppressant treatments. The Facts In 2012, the U.S. Food and Drug Administration PML & MS approved a change to the prescription label for Tysa- PML occurs exclusively in patients with severe bri to indicate that a laboratory test for antibodies immune deficiency, most commonly among pa- to the JC virus can help determine a person’s risk of tients with acquired immune deficiency syndrome developing PML. The update came two years after a (AIDS), but people on chronic immunosuppressant total of 24 confirmed cases of PML were reported by medications and chemotherapy are also at increased the company in people who had used Tysabri since risk of PML. In addition to people living with MS, its launch in 2006. Many more cases of PML have those with organ transplants, Hodgkin’s Lymphoma, now been identified. and other diseases treated with immunosuppressant In December 2014, Biogen Idec made important medications are also at risk. label changes to the prescribing information for

24 Tecfidera, including information regarding an individual who developed PML. Most recently, Biogen has confirmed the report of a second case of PML occurring in a person taking the drug. In June of 2015, the pharmaceutical company Novartis, producer of Gilenya, confirmed that it Individuals had received a report of a second and then a third case in August 2015 of PML in a person with MS on with MS Gilenya with no prior exposure to Tysabri. Even with a negative result, patients can be in- have many fected with the JC virus at any point during their lives. If someone begins taking medications that treatment carry the risk of developing PML as part of treatment for their MS, it’s important to continue regular testing to see if an infection develops. options. As “Screening for JCV antibodies and close monitoring of patients at risk for PML on some of the with any newer MS treatments allows patients to enjoy the benefits of these more effective medicines,” said medication, Jeffrey Gross, M.D., Director of both the Clinical Research Center and the MS Comprehensive Care it’s important Center at Associated Neurologists of Southern Connecticut. “Early detection of PML can greatly to discuss the reduce the impact of this serious infection. Tysabri, Tecfidera and Gilenya continue to be used because of their overall favorable impact on MS.” benefits and What Happens Next? risks with a Treatment for PML should begin immediately upon clinical suspicion and should not be delayed for con- physician. firmatory laboratory testing. If a person with MS is diagnosed with PML associated with their being on an immune-suppressing medication, it is likely that doctors will immediately discontinue the use of that medication. Discontinuation of the medication will allow the immune system to function normally and effectively control the JCV infection. Patients on Tysabri may be treated with plasma exchange to remove the drug from the body rapidly. In some patients, it is possible that restoration of What is Progressive the immune system may cause an additional condition called immune reconstitution inflammatory Multifocal Leuko/encephalo/pathy syndrome (IRIS), which may itself lead to a decline in the clinical condition. If a doctor detects this, he Progressive damage or she will likely treat the inflammation with steroids. (-pathy) or inflammation… of the white It is important to note that disease- matter (leuko-)… modifying medications and the risks associated with treatment continue to of the brain evolve as more information comes to (-encephalo-)… light. The best way to stay informed is to have open and candid discussions about at multiple locations concerns with your doctor. (multifocal).

25 CLASSIFIEDS

FOR SALE Brand new, never used Hoveround Chair. Must Sell! Grey with brand-new batteries and charger. Extremely comfortable with extra thick padding. Special wide and extra strength, foldable three- panel Hoveround wheelchair ramp. Still in the plastic. Manual wheelchair and rollator with hand brakes also available. Call or leave message for Lyn Marie at 203.753.1882.

FOR SALE Lightly used Jet2 powerchair. Grey leather. New battery needed. Call Phyllis at 860.841.2525.

FOR SALE Edge HD electric wheelchair, geriatric hospital bed, two shower chairs and adult safety bed rail. All in good working condition. Call Robert for more information at 203.268.1780.

IN THE RAYMOND P. PAID ADVERTISEMENT HOWELL LIBRARY

DIETARY SUPPLEMENTS AND MULTIPLE SCLEROSIS: A Health Professional’s Guide by Allen C. Bowling, MD, PhD and Thomas M. Stewart, JD, PA-C, MS Demos Medical Publishing 2004 101 pages

GET FIT WHILE YOU SIT: Easy Workouts from Your Chair by Charlene Torkelson Hunter House, Inc. 1999 145 pages

YOGA AND MULTIPLE SCLEROSIS: A Journey to Health and Healing by Loren M. Fishman, MD and Eric L. Small Demos Medical Publishing 2007 273 pages

26 PYNE-DAVIDSON AD The Connecticut Chapter wishes HAPPY HOLIDAYS to our friends and supporters

THE BELL SCHOOL, WINDSOR, CONNECTICUT