MS Connection - Winter 2015

WINTER 2015 ISSUE:

2015 Wrap-Up Page 13

CONNECTION

A PERSONAL JOURNEY TO WELLNESS WINTER 2015

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Hartford, CT Permit # 01870

Mike Marques Photography

Your gift today brings us closer to a world free of MS tomorrow As the holidays approach, we ask that you support the National MS Society, Connecticut Chapter, this season.

n Information & Referrals

With your help, the Connecticut Chapter can provide hope for those living with MS.

n Financial Assistance

As a non-profit organization, we rely on charitable donations in order to continue funding critical research in our state and provide services to those in need such as:

n Support Groups n Scholarships n Care Management n Community Programs: * Healthy Living * Research * Educational * Newly Diagnosed * Pediatric MS & Young Adults With MS * Family & Caregivers

National Multiple Sclerosis Society Connecticut Chapter

Make a donation today at ctfightsMS.org

CHAIRMAN’S MESSAGE

NATIONAL MULTIPLE SCLEROSIS SOCIETY CONNECTICUT CHAPTER T EL: 860.913.2550 1.800.FIGHT MS (344.4867) FAX: 860.761.2466 WWW.CTFIGHTSMS.ORG WWW.NATIONALMSSOCIETY.ORG

John W. “Jack” Betkoski, III CHAIRPERSON, BOARD OF TRUSTEES Lisa Gerrol PRESIDENT AND CEO 860.913.2550, EXT. 52531 COMMUNICATIONS

Cynthia Bidorini ASSOCIATE VICE PRESIDENT 860.913.2550, EXT. 52530 DEVELOPMENT

Kara Preston VICE PRESIDENT 860.913.2550, EXT. 52533 OPERATIONS

Loretta Sfiridis VICE PRESIDENT 860.913.2550, EXT. 52525 PROGRAMS, SERVICES & ADVOCACY

Lynette J. Coleman VICE PRESIDENT 860.913.2550, EXT. 52538 EDITOR IN CHIEF

Jacqueline Sembor GRAPHIC DESIGN

Hal Wood SPECIAL THANKS

CALL TO ACTION Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life 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 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 and about current research that may one day reveal a cure.

CONNECTION

On The Road to Wellness

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n October, the National MS Society announced a new mission statement: “People affected by MS can live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever.”

Over the past few years, great strides have been made in the field of MS research focused on allowing people to live their best lives.

In addition to groundbreaking medical and scientific advances, the National MS Society and the medical community have developed an acute awareness of how important ‘wellness’ is for those living with a disability. The Society alone has funded 78 projects focusing on the areas of wellness in MS. Wellness is defined as the state or condition of being in good physical and mental health. This means not only receiving the best physical care, but also attending social programs such as support groups, MS Vacation Week or MS Family Discovery Weekend and joining the online community at MSConnection.org.

By staying involved, you’ll not only fi nd support for the person living with MS, but support for all loved John “Jack” Betkoski, III ones who have been affected by the disease, helping them feel empowered to help fight MS, too.

In the winter months, I understand that it is exponentially harder for someone who needs mobility assistance to get out and about, and that is why it is so imperative for us at the Society to do more.

In these pages you will find information about multiple aspects of wellness – including diet, exercise and mental health; but we can’t fit it all into one magazine. The Society has an entire section of its website dedicated to this topic at nationalMSsociety.org/LivingWell-With-MS, and I encourage you to explore all that it has to offer.

We also need to continue to pledge our support of the Americans with Disabilities Act (ADA), which celebrated its 25th anniversary 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 MS, but in the meantime, we need to keep taking steps, together, on the road to wellness.

Jack John “Jack” Betkoski, III Chairperson

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

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Over 6,500 Connecticut residents, like Pozefsky, are affected by multiple sclerosis, a potentially debilitating disease affecting the central nervous system. The cause is unknown and there is currently no cure. Symptoms can include numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility and, in some more severe cases, total paralysis. The progress, severity and specific symptoms of MS in any one person cannot be predicted.

Despite her health struggles, Pozefsky focused on living her best life and carried out her passion to help children by working full-time as a fifth grade teacher. Unfortunately, the stress of her job led to an exacerbation that forced her to take a leave of absence. While she had every intention of returning to teach, she ultimately made the decision to leave her job permanently.

“I knew that what was most beneficial to my health was not having the stress of full-time work,” explained Pozefsky. “Rather than step away completely from education, I decided to volunteer at my church, teaching catechism. I am strong in my faith, and I love being around children, so it was the perfect fit for me.”

Pozefsky’s switch from a full-time career to part-time volunteer work was just the first in a number of lifestyle changes. Always having an interest in health and nutrition, Pozefsky started reading and doing research on diet and exercise and its impact on the body. She began incorporating yoga and hiking into her fitness routine. She also started taking supplements including Vitamin D3 and a probiotic. In 2003, she took her first step in modifying her diet by eliminating gluten.

“The process of changing my diet happened gradually,” explained Pozefsky. “I would eliminate a certain type of food and watch to see how it affected me. I was forever altering and tweaking the foods I consumed based on how they made me feel.”

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

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n any given day, one will find Joy Pozefsky hiking with her dog, Okee, in the woods near her home in Clinton. For an hour or two the duo will traverse the terrain, take in the fresh air and exercise their bodies and minds. It’s a way of life for Pozefsky who, in 1991, was diagnosed with multiple sclerosis at the age of 22. Her journey hasn’t been easy; in fact, it’s been a long, difficult road with plenty of ups and downs, but she’s persevered by keeping a close eye on her personal health.

“As I think back, I can remember having symptoms as a young child,” began Pozefsky. “I would complain of numbness, particularly on my left side. In high school I also suffered from tingling and severe fatigue. My symptoms worsened in college when I began to experience severe tremors, a sensitivity to hot and cold, and difficulty with memory, thinking and concentration. I would go to the doctor and be told, ‘You’re fine. You are just a Type A, stressed-out college girl.’ I knew it was real, but no one believed me.”

Determined to find an answer for her illness, Pozefsky met with a number of physicians, each unable to provide an explanation, until she met with a neurologist in Stratford. He asked probing questions about her symptoms, performed a spinal tap and MRI, and finally made the diagnosis.

“While I was extremely upset when I was told I had MS, a disease I never heard of, I was also relieved,” admitted Pozefsky. “I had been describing the symptoms of MS for years, but no one had made the connection.”

Only one MS-approved medication was on the market in the early 1990s. Because allotments were given to medical practices based on size, Pozefsky was referred to Yale where her odds for being selected for the disease-modifying therapy would be higher. Her diagnosis was confirmed and for the next 10 years she used betaseron but suffered from flu-like symptoms.

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After nearly 12 years of personal research and modifying her diet, Pozefsky now believes she has it correct. She follows a strict diet that consists of organic grass-fed meats, organic berries and vegetables, nuts, seeds, full-fat coconut milk, coconut oil, fermented foods including kombucha tea, wild fish, bone broth and liver. She also avoids certain foods such as gluten, dairy, soy, grains, sugar, beans and legumes as well as dyes, preservatives, nitrates, GMOs and artificial sweeteners.

“I know this diet may seem extreme, and it’s definitely not for everyone, but it’s what works for me,” said Pozefsky, who admits to having a bit of dark chocolate and a glass of red wine every once in a while.

Pozefsky’s approach to wellness goes beyond a regimented diet; she believes in taking a holistic path to healing, nurturing the entire self – body, mind and spirit.

“Faith and prayer are a huge part of my healing,” stated Pozefsky. “Without them I would not be where I am today.

I believe the first step in healing is to forgive – forgive those who have hurt you and forgive yourself. People can carry guilt, hurt and shame in their lives. I’ve found that doing so is dangerous and can contribute to sickness. It’s best to find a friend and talk it out.”

Pozefsky’s network of friends and family provide her with tremendous strength and support. Her husband Todd, in particular, is her anchor. The two were high school sweethearts and together have faced the highs and lows that can be brought on by a diagnosis of MS. “Todd is my number one supporter,” expressed Pozefsky. “He’s been with me every step of the way – from the time I was diagnosed, to the period when I lost vision in

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my left eye, through a spell of paralysis from the chest down, to now. But sometimes I think he feels helpless.”

Recently Todd found a very special and meaningful way he could help. When Ojakian Commons, New England’s first affordable, accessible, supportive housing community for people with disabilities, coordinated by the National MS Society, Connecticut Chapter, was being built, Todd decided to make a donation to have the Resident Care Office named in his wife’s honor.

“Todd was so impressed with the vision of the Connecticut Chapter’s President Lisa Gerrol and understood the need for such a residential community for people with MS,” said Pozefsky. “He wanted to offer his support, not only to me but to others living with MS.” Supporting the National Multiple Sclerosis Society has been a long-term commitment for the couple. When Pozefsky was first diagnosed, she and Todd participated in Walk MS and raised $2,000. This past April marked their 20th anniversary of fundraising. They, alongside family, friends and of course, Okee their dog, walked at Hammonasset Beach State Park in Madison and raised nearly $30,000, bringing their lifetime fundraising total for Walk MS to well over $350,000.

“Fundraising is personal,” said Pozefsky. “It’s important for me to make a connection with the people whom I’m asking for financial support. I choose to send letters, handsign each one, and include a self-addressed stamped envelope. Each time I receive a donation, I am overwhelmed by the generosity of others.”

In 2016, Pozefsky will once again step out at Walk MS, presented by Travelers, which will be held at nine sites

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.”

Mike Marques Photography

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

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An MS Research Revolution

RESEARCH ROUND-UP: NOVEMBER 2015 STOP

RESTORE

“What’s changing about MS in terms of how we treat it is that we’re looking at the whole person, not just one part of their life.”

– Timothy Cotzee, Ph.D., Chief Advocacy, Services and Research Officer, National MS Society

Antioxidants And MS Antioxidants are natural or man-made substances added to many foods to block the action of ‘free radicals,’ which are by-products of bodily processes that can cause tissue injury and promote immune attacks in MS. Researchers at Oregon Health & Science University were able to demonstrate that the antioxidant MitoQ helped reduce symptoms in mice with a multiple sclerosis-like disease.

This antioxidant, developed more than a decade ago, reduced inflammation and increased nerve-cell activity in the spinal cords of mice with the MS-like disease after just 14 days.

“The MitoQ significantly reduced inflammation of the neurons and reduced demyelination,” said lead researcher P. Hemachandra Reddy, Ph.D., Associate Scientist at Oregon Health & Science University’s Oregon National Primate Research Center. “These results are really exciting. This could be a new front in the fight against MS.” Reddy’s team will now move to understand the mechanisms of MitoQ neuroprotection in different regions of the brain and how MitoQ protects mitochondria within the brain cells.

Building Confidence Can Help People With MS Researchers from Case Western Reserve University set out to find what prevents people with multiple sclerosis from living fuller, healthier lives.

Matthew Plow, Assistant Professor at the University’s Frances Payne Bolton School of Nursing, and his team asked 335 people with MS to rank the importance of 20 activities. Of these activities, participants ranked the 8

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following as most important to them: getting out and about, spending time with family and friends, managing bills and expenses, and participating in clubs and civic and political events. Although people with MS want to engage in these activities, researchers found that three barriers in particular – lack of confidence, physical and mental impairments, and environmental factors – prevent people with MS from doing so.

Researchers also found that physical and mental impairments, like MS fatigue and cognitive and walking problems, combined with environmental factors, like inadequate social support and transportation issues, impede a person’s confidence to manage MS symptoms and ultimately prevent them from engaging in healthy behaviors and meaningful activities. This lack of confidence may also prevent people with MS from taking steps to prevent secondary symptoms like depression, deconditioning from lack of exercise, and poor nutrition or eating choices that may result in obesity or diabetes.

Based on the results of this survey, Plow is testing an intervention that would build confidence in individuals living with MS. It would give the individual steps to take to make changes and learn new skills to engage in activities that are meaningful to them.

Society’s Research Programs Advisory Committee Meets To Advise On Research Funding In June, the Society’s Research Programs Advisory Committee (RPAC) made recommendations regarding funding for research projects and strategic initiatives. Based on this advice, the Society’s CEO approved an initial $14.7M in new multi-year funding commitments, including 22 research grants, nine health care delivery and policy contracts, and five Illinois Lottery Pilot Awards. Discussion also included key Society research advocacy issues, a wellness research strategy, the status of ongoing research initiatives, and input on setting research priorities for the Society’s Strategic Plan.

Debra Frankel, the Society’s Vice President of Programs, Services, Advocacy and Research, provided an update on

MS TASTEof HOPE

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 infrastructure and collaboration to prioritize research and to serve as a training ground for wellness researchers.

We thank our generous vendors

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.

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Symptom Management

What Diet Is Right For You?

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ultiple sclerosis is a very dynamic condition, and as such, each person affected by the disease will need to treat it a little differently. This carries through to what a person with MS should be eating too. With physical changes come different dietary needs. Below are a few of the most popular diets and their observed effects, if any, in people living with MS.

Gluten-Free A gluten-free diet is completely devoid of all wheat, barley, rye and triticales. This diet also must avoid cross-contamination with foods containing the material. It is important for people on a gluten-free diet to find substitutes to avoid significant restrictions in caloric intake and nutritional deficiencies.

There is no evidence for a role of the gluten-free diet in people with MS. Multiple studies suggest that people with MS have the same prevalence of anti-gliadin and anti-TTG antibodies (antibodies elevated in Celiac disease) as healthy control groups.

McDougall Diet The McDougall diet is a low-fat, high-carbohydrate, moderate-sodium, vegan diet. It is based on the premise that the rich Western diet is the cause of several chronic diseases and aims at eliminating animal-based food and vegetable fats by replacing them with low-fat, plant-based foods.

This diet includes a basic structure of complex carbohydrates and starches including wheat, corn, rice, oats, barley, quinoa, potatoes, sweet potatoes, beans, peas and lentils.

Fresh fruits and colored vegetables can be added to the diet in any quantity. Animal-derived foods and any oils are not allowed.

No evidence exists to suggest this diet is effective in MS, but a study from the McDougall center showed that seven days of the diet led to a reduction in weight, blood pressure and cholesterol.

Mediterranean Diet (MD) While there are various definitions of MD, they generally share these components: a high intake of whole grains, vegetables, fruits, legumes, olive oil and fish; a low intake of saturated fats, red meat, poultry, dairy; and a moderate intake of red wine.

There is currently no data for a role of the Mediterranean diet in MS, but there is evidence for a beneficial effect in type-two diabetes, cardiovascular disease prevention and even cancer prevention.

Paleolithic Diet The Paleolithic diet is based on the idea that the human body is poorly evolved to handle the modern diet and advocates for a switch to foods that would have been consumed by our ancestors in a hunter-gatherer lifestyle.

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The first step is to eat natural foods while avoiding highly processed foods. This diet also emphasizes the intake of game meats and plant-based foods such as fruits, legumes, roots and nuts. This diet is also high in fiber.

A small, uncontrolled study on the Paleolithic diet’s effect on people with secondary-progressive MS showed significant improvement in fatigue scores over a period of 12 months.

However, the study also involved elements including exercise, stretching, massage and meditation.

Swank Diet The Swank diet was used by Dr. Roy Swank to treat patients with MS for many years. The diet is essentially a low-fat diet focusing on reducing both saturated and unsaturated fats.

Guidelines for the diet include a saturated fat intake of 15 grams or less per day, and an unsaturated fat and oil intake of less than 50 grams per day. No processed foods containing saturated fats should be consumed and dairy products should contain less than one percent fat. Whole grain cereals and pastas as well as two cups each of fruit and vegetables are recommended.

Swank reported the effects of his diet over a 20-year period in patients with MS. His findings suggested that the diet reduced the occurrence of relapses, accumulation of disability and mortality. However, the study did not have a control group.

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hile many different dietary strategies are being promoted for people with MS, currently there is no evidence to recommend any one in particular.

Almost all of the diets advocate avoiding highly processed food, foods with a high glycemic index, and food that is high in saturated fat. Most diets also recommend reducing consumption of fatty red meats and increasing consumption of fruits and vegetables.

Denise Nowack, R.D., Executive Vice President of Chapter Programs and Services of the Southern California and Nevada Chapter, suggests starting the day or week with a plan that practices simple meal management which can eliminate an extra trip to the grocery store. Arranging the kitchen so that all necessary items are close together makes cooking simple and efficient. Buying pre-cut or prepackaged items can minimize cooking time by 10 to 15 minutes. This will also preemptively stop unhealthy temptations such as heating up frozen meals or eating out.

Finding the perfectly-balanced diet can seem daunting.

However, proper nutrition is fairly simple and becomes more meaningful when it’s an aspect of one’s own health that can be controlled.

It is important to consult your health care professional to discuss changes to your diet. For more information on diet and nutrition, visit nationalMSsociety.org/diet.

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Health and Love

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

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t is common for someone with MS to be cared for by his or her spouse or partner, yet there is little research about caregivers’ own physical and mental health needs. This little detail is driving one Ph.D. candidate and her new research study coming out of the University of Albany.

“I have always been interested in the interaction between physical health and mental health,” said Alison Rivers, a native of Tolland.

“W hen I began graduate school, I immediately started my dissertation research exploring mental health in the face of a chronic illness. I chose to narrow in on MS because of how unpredictable and versatile the disease can be. I started off studying MS because of my academic interests, but by now, I am studying MS because of personal interests, too.”

R ivers graduated from Fairfield University with a degree in psychology in 2008 before beginning her studies at the University at Albany, 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 actively recruiting participants for her second research study on spousal/partner caregivers of people living with MS. The study is in the form of a 40-minute survey, with limited open-ended questions.

Rivers will continue to accept participants through December 31, 2015.

“Before I developed my research questions, I wanted to get to know the MS community, so I spent a lot of time talking with the passionate people who work for the National MS Society and conducted a few pilot interviews,” she explained. “I was struck with how strong and resilient some caregivers can be. I wanted to learn

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the different ways that caregivers try to handle the stress and challenges they might face.”

Caregivers who have a spouse with multiple sclerosis are invited to participate in this research study. The main goal of this study is to examine how caregiving duties and post-traumatic stress symptoms may interact with caregivers’ health and marital adjustment.

All surveys are submitted anonymously. Participants do not need to share contact information or location to take part. After participants complete the survey, however, they will earn an entry into a drawing for one of five $75 gift cards. The survey and raffle drawing are being kept completely separate, so one will not be linked in any way to the other.

“I want to shine some light on these dedicated individuals,” Rivers shared. “I feel lucky to be a part of the MS community through my research and I am committed to trying to help that community through what we learn together.”

Alison Rivers To participate in this study online, please go to https://www.surveymonkey.com/s/ MScaregiverstwo. To request a hard copy of this survey along with a self-addressed, stamped envelope, please contact the Connecticut Chapter.

For more on support for caregivers, search ‘Family Matters’ on nationalMSsociety.org.

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Two Options For Runners To ‘Finish MS’

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hen Windsor resident Stephanie Famiano went out for her first run 10 years ago, it was a lot shorter than a half-marathon. But, as sore as the jog left her, she knew that pushing herself felt good. Today, Famiano has eight marathons under her belt and is using her passion to help fund a cause near and dear to her heart.

“My husband Joe and I were high school sweethearts,” said Famiano. “I was shocked when in 2013 we learned he had multiple sclerosis.”

While Joe’s MS symptoms have been manageable, 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 diagnosis, she decided to ask for sponsorships and 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 charity 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.

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Registration for the April 24, 2016 Ion Bank Cheshire Half-Marathon will open at the beginning of the new ye ar. Team members are required to reach a fundraising minimum of $250 before receiving their free race registration and bib. Last year $25,000 was raised for the Connecticut Chapter.

Registration for the Hartford Marathon opens each year in the spring and the race will occur Columbus Day Weekend. Registration fees for this event vary by race distance.

Lisa Gerrol with Ion Bank President, Charles J. Boulier III

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n 2015, nearly 10,000 walkers stepped out at 11 walk sites across the state of Connecticut 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, P.C.; Assa Abloy; 4AllPromos/4AllGifts; Advanced Wheels; Biogen; Castleton Commodities International; Genzyme, a Sanofi company; Unilever; All American Waste; Harte MV-1 of Connecticut; Lydall, Inc.; Mallinckrodt Pharmaceuticals Autoimmune and Rare Diseases Business; U.S.A. Hauling & Recycling Inc.; and Yale University.

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 2015 Presented by

Walk Site Top Teams

Travelers

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 Alec Burger Joy Pozefsky Scott Bengston Chris Getman Stephen Borsy Joan Sidney Don Walsh Alicia Teitelbaum Kacey Sullivan

$86,380 $ 55,445 $ 29,730 $28,908 $ 22,991 $ 17,420 $ 16,925 $ 14,355 $12,060 $ 11,695

(All totals as of September 16, 2015)

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early 600 cyclists shifted gears to pedal up to 100 miles and raised more than $518,000 during 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. The chapter also thanks platinum sponsor Griffin Land, who generously served as host sponsor of the Windsor ride site.

Other sponsors included: 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

Ride 2015 presented by

Louis Dreyfus Commodities Top 10 Fundraisers Evan Flaschen John Formica Larry Greenhall Peter Porrino Tim Lescalleet Patrick Smith Ray Martin Mike Stacy Mark Homan Cornelius Grealy

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$ $ $ $ $ $ $ $ $ $

52,999 33,255 22,205 14,700 10,730 10,335 10,280 9,008 6,005 3,970

2014 Run MS 5k

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ast fall, 380 runners turned out for the Connecticut Chapter’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

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n April, 19 National MS Society runners participated 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

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uckFest MS participants from the Connecticut Chapter 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 n the more tha ers 950 volunte s to who joined u vents e r u o t r o p p su this year!

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Thursday, November 19, 2015 MS Dinner of Champions – Stamford

Save the Date!

Upcoming Connecticut Chapter Events at a Glance

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 Tuesday, March 29, 2016 MS Action Day – Hartford Saturday, April 16, 2016 Walk MS – Fairfield Sunday, April 17, 2016 Walk MS – Cheshire Walk MS – Simsbury Walk MS – Waterford Walk MS – West Hartford Sunday, April 24, 2016 Cheshire Ion Bank Half Marathon Saturday, April 30, 2016 Walk MS – East Hartford Sunday, May 1, 2016 Walk MS – Litchfield Walk MS – Stamford Walk MS – West Haven Monday, May 16, 2016 Golf MS – North Stonington Sunday, June 5, 2016 Bike MS – Windsor Sunday, June 12, 2016 Bike MS – Norwalk

Visit our calendar at ctfightsMS.org for a complete list of local events and programs.

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Sunday, June 19 – Friday, June 24 MS Vacation Week – Hebron

Wallingford Man Hopes To Help Turn The Tide On MS

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n a solo effort to spread awareness and raise funds for multiple sclerosis, this fall one Wallingford man took his journey out to sea.

“I set out from Rocky Neck State Park to kayak 20 miles across Long Island Sound to Orient Point, Long Island and back,” shared Andrew Pires, age 27.

“I knew the journey would be long and difficult, but when put into perspective, I only had to endure for one day. Millions of people struggle with the effects of MS for years with no end in sight.”

Two of those people affected by multiple sclerosis are very dear to Pires – his mother, Carol Ann was diagnosed in 2006, and his Uncle Tommy was diagnosed in 1966.

“I was diagnosed the year Andrew graduated from high school,” remembered Carol Ann. “It started with a bout of optic neuritis. Ironically, I had just seen my eye doctor and nothing had been wrong. When I went back, he immediately suspected MS and advised me to schedule an MRI.” Fortunately, Carol Ann began a course with a disease-modifying therapy and has not experienced any new lesions.

“I really take care of myself and try to stay active,” she continued. “But, I do rest when I need it.

It’s important to listen when your body tells you it’s tired. I respect my MS, but I refuse to let it rule the way I live.”

I n c ont r a s t to her brother, Carol Ann felt fortunate to have been diagnosed at a time when there were so many treatment options and MS specialists to ensure that those living with MS could find a way to live their best lives.

“I unfortunately never got to meet my uncle because he lost his battle in 1984, four years before I was born,” said Pires. “But, my mother is a true fighter and never plans on giving in to this diease.”

Pires has supported his mother’s ongoing battle by participating in many National MS Society events, including Walk MS, Muck Fest MS, and Run MS. But, for his most recent challenge, Pires did all the organizing himself.

“After injuring my shoulder and undergoing multiple surgeries to fix it properly, my physical therapist recommended kayaking as a new hobby,” he shared.

“That was a few years ago, and now I find myself out on the water three or four times a week when my work and study schedules allow for it.”

Recently, Pires, an Audit Associate at Whittlesey & Hadley, P.C. in Hartford, decided to pair his passion

for paddling with his drive to help support his mother’s ongoing battle with MS and set up a Do It Yourself (DIY) fundraising page through the Connecticut Chapter’s website.

“I was due for another fundraiser,” he said. “I participated in a half-marathon to raise additional funds, but if I go too long without doing something to support the fight against MS, I get this feeling of helplessness. I’m the type of guy who will take on anything with the mindset of getting it done, but there is nothing I can do to help my mother rid her body of MS. Raising money is what I can do to contribute to her fight and the fight of everyone else living with MS.” Pires set a fundraising goal of $5,000, and reached out to his group of supportive friends, family and coworkers to sponsor his 20-mile trip. But, Pires admitted, money won’t do the hard work for him– he has to earn it.

“My mother and I share a belief that a person can accomplish anything when they possess a determined mind; however, I felt completely helpless when she was diagnosed,” said Pires. “I raise funds because I cannot stand by and do nothing to help.”

Pires’s journey is an example of DIY fundraising. The National MS Society encourages individuals to use their talents and interests to raise funds. With endless possibilities, anyone can find a way to get involved in the fight against MS. “Every dollar counts in our mission to create a world free of MS,” said Community Outreach Coordinator and Manager of DIY events Kate Moore of the Connecticut Chapter.

“Just by hosting an event or party, people have raised more than $240,000 through DIY fundraising in 2015. And there’s no right or wrong way to do it.”

Funds raised through DIY events ensure ongoing scientific research to find a cure and provide for the continuation of vital programs and services offered by the chapter to Connecticut residents affected by MS. Examples of past DIY fundraisers include shopping vendor events, beer tastings, pig roasts, golf tournaments, sporting tournaments, scavenger hunts, comedy nights, rose sales, concerts, motorcycle rides, poker tournaments, car shows, art shows, chili cook-offs, pub crawls and more.

“I’m proud to say that my mother has the resiliency to take on MS,” said Pires. “And I am hopeful that my personal efforts can help her beat it.”

For more information on organizing your own DIY event, contact Kate Moore at 860.913.2550 or visit nationalMSsociety.org/DIY. To make a donation and support Pires’s journey, visit: http:// tinyurl.com/DeterminedMind.

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Funding A Dream

Using A Scholarship To Give Back

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aura Manes, of Rocky Hill, is a fighter. She first had to face the challenge of going back to school as an adult learner, but she did so to pursue her dream of becoming a nurse. She put in 18-hour days to keep her full-time job while going through a demanding program, but she did it because she wanted to continue to support the beautiful family she and her husband, Derek, were building. And she kept at it, even when a chronic, debilitating disease threatened to push her off course.

“When my symptoms first started on a drive home, I thought maybe it was just my allergy to shellfish, so I 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.”

Manes has continued her demanding lifestyle. She has continued to work at Whelen Engineering, as she has for 19 years. She dedicates time to be there for her 15-year-old son, Kevin, even when the day doesn’t seem to have enough hours. And of course, she’s taking more classes to finish her degree in nursing, which she will receive on December 17th from Goodwin College. But she did ultimately accept a little bit of help.

“I am certainly not the kind of person to ask for help, but I’m running out of options and have responsibilities, so I’m asking now,” she wrote in her 2015 National

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MS Society scholarship application, when with three semesters left until graduation, she ran out of student loans.

The National MS Society established its scholarship program 12 years ago for students who either have MS or a parent living with MS. The program immediately became a source of encouragement for families concerned that MS might put college out of reach. In 2015, the National MS Society made adjustments to the scholarship applicant criteria, and for the first time began accepting applications for all students, not just incoming college freshmen. This year, more than $1.2

million in awards were presented to over 800 new and renewal recipients nationwide, including adult learners like Manes.

“I was overjoyed when I got a letter notifying me that I would be receiving aid,” she said. “My ultimate goal is to enter the field of neurology so I can help others affected by MS and other neurological diseases. I want to be an example for others, like my cousin was to me, that receiving this diagnosis does not mean that your dreams have to end.”

Applications are evaluated on financial need, academic record, leadership and volunteer activities, a

statement of educational and career goals, and letters of recommendation. Applicants are also asked to provide a personal statement describing the impact MS has had on their life. Scholarships range from $1,000 to $3,000 and recipients are eligible to reapply each year to be considered for a future award. The program is competitive and awards are not guaranteed.

“For the Manes family and others affected by MS across the country, there are very few known resources of scholarship assistance specially targeted for these families,” said Lisa Gerrol, Connecticut Chapter President and CEO. “MS shouldn’t stand in the way of an education, and we are hopeful this program will give families some relief.”

The National MS Society is currently accepting scholarship applications for the 2016-17 academic year.

For the 2016 program, applications must be submitted online by January 15, 2016, and supporting documents received no later than January 31, 2016 to the address listed on the application instructions.

“…this diagnosis does not mean that your dreams have to end.”

MS Scholarships

Do You Qualify?

Individuals who have MS or who have a parent with MS are eligible to apply as long as they meet all of the following eligibility criteria: ∫ Will be enrolled in an undergraduate course of study at an accredited two- or four-year college, university or vocationaltechnical school in the U.S. or a U.S. territory for the 2016-17 academic year. ∫ Will be enrolled in at least six credit hours per semester in coursework leading to a degree, license or certificate. ∫ Applicants must be United States citizens or legal residents living in the U.S. or a U.S. territory.

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“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.

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Congratulations to our local inductees to the

National MS Society’s 2015 Volunteer Hall Of Fame Larry Greenhall Larry Greenhall has created a lasting legacy which directly impacts the Connecticut Chapter as a whole. He is a current member of the Chapter’s Board. Greenhall has carried his leadership to the Chapter’s mass-market sphere through his creation of Bike MS corporate teams at each of his previous and current employers, appointing team leaders to maintain company engagement. Additionally, Greenhall’s involvement at the bike tour has garnered significant and actionable MS awareness by enlightening hundreds of people who otherwise do not have a connection to the disease. In 2013, the combined historical fundraising of his teams reached the $1 million mark. In addition, Greenhall gives generously to the MS Dinner of Champions and has hosted a donor reception at his home.

Jeffrey Gross, M.D. Dr. Gross first encountered multiple sclerosis as a young boy growing up in the 1950s but at the time was told not to ask about his neighbor, who never came out of her home because she was living with MS. He learned more about MS while attending medical school, but couldn’t see himself becoming a specialist for a disease without a cure. Then, after entering private practice in the 1980s in Connecticut, it seems that MS found Gross again. He began speaking at MS support groups and was invited to join the local Health Care Advisory Committee and Board of Trustees. More recently, he also joined the Financial Assistance Committee, Government Relations Committee and MS Dinner of Champions Committee. Through it all, Gross continues to lead with a spirit of inclusion and willingness to work behind the scenes.

Joseph Guarnaccia, M.D. Dr. Guarnaccia first joined the MS movement when he signed on as Director of the Yale MS Center in the late 1990s. In 2000 he opened his own clinic, The MS Treatment Center at Griffin Hospital and became involved with the Connecticut Chapter’s Health Care Advisory Committee. More recently he expanded his volunteerism through a

variety of roles with the Society, including MS Activist. “I received a Society email in 2014 listing the legislative priorities for the year with a request for feedback, and it was at that point that I shared my frustrations about my inability as a private practitioner to prescribe off-label drugs which I knew to be effective treatments.” Guarnaccia banded together with a small group of volunteers who, within a year, pushed through a change to the Connecticut General Statutes to broaden coverage for off-label medications.

Albert Lo, M.D., Ph.D. Dr. Lo has been a member of the Connecticut Chapter, dating back to his early career at Yale University Department of Neurology and the local VA Hospital as a treating neurologist, before he transitioned to Connecticut’s first Comprehensive MS Care facility, the Mandell Center. Annually, he presents at local constituent educational programs as well as professional symposia. Lo is also an active member of the Health Care Advisory Committee where he serves as the liaison between the research community and clinicians. He is renowned for his dedication to bridging the gap between scientific research and real and tangible treatments and therapy offered in MS care. Lo also contributes significant time and talents to serving on high-level international volunteer committees convened to determine the strategic direction of MS research. Most recently, he was part of the team that helped drive the Society’s wellness initiatives.

Joel Pachter, Ph.D. For more than 20 years, Dr. Pachter has been a Society-funded researcher and is recognized by the healthcare community as someone who has a wealth of knowledge on MS-related topics and is counted on to help raise awareness for the disease and the Society’s work in the greater community. He is one of a few researchers that the Society has been able to work with for more than two decades to conduct basic bench work and to mentor others. As a senior investigator, his leadership is also demonstrated in the growing number of MS only projects as well as projects that will help advance MS research at the University of Connecticut. To date, more than $3 million in Society-funded projects and more than $1.2 million in state funded research are associated with Pachter and his 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!

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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 Chapter 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 st wanted to use my voice to drive change.”

Hartford Greenberg found her voice when she nd was recruited by Susan Raimondo, the th Connecticut Chapter’s Senior Director of Advocacy and Programs, to join the GovWaterbury Middletown ernment Relations Committee. Through phone calls, letters and volunteering at the Chapter’s State MS Action Day at rd the capitol, Greenberg was able to join a New Haven fleet of people who regularly correspond th and meet with legislators, emphasizing Connecticut that the needs of those living with MS Bridgeport have never been greater. Then, in 2014, Congressional Districts Greenberg was chosen by the Connecticut Stamford Chapter for its new volunteer position of District Activist Leader.

Now, the Connecticut Chapter is looking for more driven Leaders may also be asked to travel to the Society’s annual volunteers like Greenberg to serve as District Activist LeadPublic Policy Conference in Washington D.C. There, more ers for U.S. Congressional Districts three and five in our than 400 activists from across the country participate in state. District Activist Leaders are responsible and reliable training and briefings on the important federal legislative high-level volunteers who can communicate respectfully priorities of the MS Society. and represent the MS movement position on local, state and Greenberg educated local legislators about needs in the federal issues. These leaders should have a passion for politics, community, and did so compellingly, often leaving lasting be well-versed in issues impacting people with MS, be comimpressions on those she met. She found a purpose for her fortable with public speaking and have strong interpersonal, diagnosis, and you can too. leadership and organizational skills.

“MS is a complex disease that is often misunderstood,” said Susan Raimondo. “As we work to create awareness The District Activist Leader program was developed to idenof MS, especially among public officials, we need articutify high-level volunteers to build relationships with elected late, passionate individuals who can be leaders in the MS officials. Responsibilities of District Activist Leaders include: 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 inforsusan.raimondo@nmss.org. mation to Society government relations staff;

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SUPPORT GROUPS BRANFORD 3rd Wednesday, 5:30 p.m.

James Blackstone Memorial Library 758 Main Street Cheryl at 203.535.3053

COLCHESTER 2nd Saturday, 10:30 a.m. to noon 59 Harrington Court Peggie at 860.267.9759

DANBURY 2nd Wednesday, 7 to 8:30 p.m.

Main Street Rehab Center, 235 Main Street Amy Watkins at 800.344.4867 Professionally facilitated

DANBURY Caregivers 2nd Wednesday, 7 to 8:30 p.m.

Main Street Rehab Center, 235 Main Street Joe at 203.264.2252

DERBY 3rd Wednesday, 4:30 to 5:30 p.m.

Griffin Hospital, 130 Division Street Lisa at 203.231.4716

GRANBY 2nd & 4th Monday, 1 to 3 p.m.

Granby Senior Center 15 North Granby Road Meaghan at 860.428.2463

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 information provided should not be used for solicitation purposes. Additional support can be found online at msconnection.org.

MIDDLETOWN 2nd Saturday, 1 p.m.

Wadsworth Glen, 30 Boston Road Mary at 860.828.5240

MILFORD 2nd Saturday, 1:30 p.m.

Milford Hospital, 300 Seaside Avenue Debbie at 203.878.6661 John at 203.874.1225

NEWINGTON 2nd Thursday, 12 to 2 p.m.

Newington Senior and Disabled Center 120 Cedar Street Charlie at 860.667.1314 or Tom at 860.236.2751

NEW LONDON 4th Wednesday, 6:30 p.m.

Lawrence & Memorial Hospital 365 Montauk Avenue Eileen at 860.442.0711, ext. 4990 Professionally facilitated

NORWALK 1st Friday, 1 to 3 p.m.

South Norwalk Library, 10 Washington Street Erica at 203.984.7027

TRUMBULL 3rd Tuesday, 6:30 to 8 p.m.

Trumbull Library, 33 Quality Street Amy Watkins at 800.344.4867

VERNON 1st Friday, 7 p.m.

Vernon Police Department Community Room 725 Hartford Turnpike Patty at 860.874.3220

WATERBURY 3rd Monday, 6 p.m.

Village at East Farms, 180 Scott Road Jackie at 203.753.2708

WATERBURY 3rd Wednesday, 5:30 p.m.

Joseph Jaynes Building, 77-79 Bishop Street Karen at 203.754.9656

WEST HAVEN Every Thursday, 11:15 a.m.

West Haven VA Hospital, Building 2, 3rd floor 950 Campbell Avenue Mary Lou at 203.932.5711, ext. 2276 Open to veterans only. Professionally facilitated.

NORWALK 1st & 3rd Tuesday, 1 to 3 p.m.

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.

St. Paul Church, 84 Sherwood Ave. Paula at 203.629.7053

PLAINVILLE 3rd Monday, 7 to 9 p.m.

Wheeler Clinic, 91 Northwest Drive Irma at 860.793.9272

HAMDEN 3rd Saturday, 11 a.m.

The Playwright, 1232 Whitney Avenue Paul at 203.213.5466

SHELTON 2nd Monday, 2 to 3:30 p.m.

Plumb Library, 65 Wooster Street Amy Watkins at 800.344.4867

HARTFORD Last Tuesday, 6 p.m.

Mandell Center, 490 Blue Hills Avenue Stacy at 860.502.5973 Ashley at 203.583.0169

MANCHESTER 1st Monday, 10 a.m.

Presbyterian Church of Manchester 394 Lydall Street Karen at 860.746.4247 or Nancy at 860.742.5155

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Be sure to visit www.ctfightsMS.org STORRS 2nd Tuesday, 6:30 p.m.

Mansfield Senior Center, 303 Maple Road Joan at 860.429.7271

and click on the “Services and Support” button to find out the most up-to-date information on the vital programs and services offered by the Connecticut

TORRINGTON 2nd Wednesday, 7 to 8:30 p.m.

VNS of Connecticut, 65 Commercial Blvd.

Amy Watkins at 800.344.4867 Professionally facilitated

Chapter.

café con leche

Grab your coffee, sit back, and listen to the experiences of other people living with MS! Café Con Leche is a free monthly telephone group offered by the National MS Society. The group is conducted in Spanish once every 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 people living with MS and experts from various areas of specialization in MS will join the calls.

Computer Outreach Program The National MS Society’s Computer Outreach Program provides computers to those who 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 the world via social media and online support networks, as well as have an avenue to educate themselves about MS. For further information on the Computer Outreach Program, please contact Abigail Vacca at 860.913.2550, ext. 52522, or abigail.vacca@nmss.org.

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What you need to know about PML

by Jacqueline Sembor, Senior Communications Specialist

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n the multiple sclerosis community, ‘PML’ can be a concern for individuals on certain disease-modifying therapies. And while the benefits of these therapies may far outweigh the risks, it is important that people are well-informed.

As the treatment of multiple sclerosis continues to advance, important novel safety issues are emerging.

“PML” is a serious complication of some of the newer MS therapies.

What IS PML? Progressive multifocal Leukoencephalopathy (PML) is a serious opportunistic infection of the central nervous system. This brain infection is caused by the John Cunningham virus (JCV) in the setting of a weakened immune system.

Interestingly, JCV infection, named for the patient from whose tissue the virus was first successfully cultured, is very common. It is estimated to occur in more than three-quarters of Americans. A healthy person carrying the virus will never have any symptoms or illness from the virus. However, in people who are immune-deficient, the virus can progress to PML. This is exactly what can occur in people who have MS and are taking certain immuno-suppressant medications.

PML typically will present as a sub-acute illness with evolving multifocal neurologic deficits over days and weeks. Initial symptoms of PML may include loss of language ability, changes in personality, deterioration of memory, loss of coordination or clumsiness, vision impairment, headaches and seizures. As the disease progresses, symptoms become worse and severe disability or death can result.

One important observation made by scientists is that PML does not typically affect common MS targets such as the optic nerve or the spinal cord, but it does target the brain. The risk of PML rises with both duration of immunosuppressant treatment and the number of immunosuppressant treatments.

PML & MS PML occurs exclusively in patients with severe immune deficiency, most commonly among patients with acquired immune deficiency syndrome (AIDS), but people on chronic immunosuppressant medications and chemotherapy are also at increased risk of PML. In addition to people living with MS, those with organ transplants, Hodgkin’s Lymphoma, and other diseases treated with immunosuppressant medications are also at risk.

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Because multiple sclerosis is an autoimmune disease, some of the treatment options available are effective because they are able to suppress the immune system. Unfortunately, if someone also has been previously infected with JCV they have increased vulnerability to PML because the virus is never cleared from the body. While an intact immune system easily controls the virus, a weakened immune system may not be able to contain the virus. This may eventually lead to the development of PML. The diverse symptoms of PML can be very similar to MS symptoms. Interestingly, the target cell in the brain for the JC virus is the same cell that forms myelin, the target tissue in MS. For this reason, individuals with MS should be alert to any new or worsening symptoms and report them promptly to their health care provider.

Before administering a course of treatment with an immune-suppressing medication to treat MS, health care providers will screen for the presence of the JC virus. If a doctor suspects that a patient may have PML, they may conduct an MRI to detect any changes in the brain, and assess clinical symptoms.

To confirm a diagnosis of PML a lumbar puncture or spinal tap is conducted to detect the presence of the virus in spinal fluid.

In 2012, the FDA approved the Stratify JCV Antibody ELISA test. This JC virus blood test can determine if a person has been infected with the virus.

A positive test does not mean a person will develop PML. Studies indicate that only JC virus-positive individuals have the potential to develop PML. Together, a patient and their doctor should determine how often a test for JC virus antibodies should be administered. If infection occurs, more intensive surveillance or discontinuation of treatment may be appropriate.

The Facts In 2012, the U.S. Food and Drug Administration approved a change to the prescription label for Tysabri to indicate that a laboratory test for antibodies to the JC virus can help determine a person’s risk of developing PML. The update came two years after a total of 24 confirmed cases of PML were reported by the company in people who had used Tysabri since its launch in 2006. Many more cases of PML have now been identified.

In December 2014, Biogen Idec made important label changes to the prescribing information for

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 had received a report of a second and then a third case in August 2015 of PML in a person with MS on Gilenya with no prior exposure to Tysabri.

Even with a negative result, patients can be infected with the JC virus at any point during their lives. If someone begins taking medications that 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.

“Screening for JCV antibodies and close monitoring of patients at risk for PML on some of the newer MS treatments allows patients to enjoy the benefits of these more effective medicines,” said Jeffrey Gross, M.D., Director of both the Clinical Research Center and the MS Comprehensive Care Center at Associated Neurologists of Southern Connecticut. “Early detection of PML can greatly reduce the impact of this serious infection. Tysabri, Tecfidera and Gilenya continue to be used because of their overall favorable impact on MS.”

What Happens Next?

Treatment for PML should begin immediately upon clinical suspicion and should not be delayed for confirmatory 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 the immune system may cause an additional condition called immune reconstitution inflammatory syndrome (IRIS), which may itself lead to a decline in the clinical condition. If a doctor detects this, he or she will likely treat the inflammation with steroids.

It is important to note that diseasemodifying medications and the risks associated with treatment continue to evolve as more information comes to light. The best way to stay informed is to have open and candid discussions about concerns with your doctor.

Individuals with MS have many treatment options. As with any medication, it’s important to discuss the benefits and risks with a physician.

What is Progressive Multifocal Leuko/encephalo/pathy Progressive damage (-pathy) or inflammation… of the white matter (leuko-)… of the brain (-encephalo-)… at multiple locations (multifocal).

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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 threepanel 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. ctfightsMS.org @ctfightsMS

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.

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EVERY CONNECTION COUNTS Get connected to the chapter online for the most up-to-date news, information and events.

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IN THE RAYMOND P. 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

• Lifetime power train warranty • Stair lifts, new and used are available for rent with an option to buy For more information and to schedule a free evaluation call

888-665-4387

www.freedomliftsonline.com

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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

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The Connecticut Chapter wishes

HAPPY HOLIDAYS to our friends and supporters

THE BELL SCHOOL, WINDSOR, CONNEC TICUT

National Multiple Sclerosis Society Connecticut Chapter