Riding for Family Summer 2016

THIS ISSUE: Off-Label Drugs Page 13 CONNECTION

RIDING FOR FAMILY SUMMER 2016

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ORGANIZATION NON-PROFIT Mike Marques Photography Mike JUNE 5 > WINDSOR GRIFFIN CENTER BUSINESS PARK JUNE 12 > NORWALK CRANBURY PARK

THANK YOU TO OUR PREMIER NATIONAL SPONSORS CONNECTICUT TITLE SPONSOR CONNECTICUT PRESENTING SPONSORS NATIONAL MULTIPLE SCLEROSIS SOCIETY CHAIRPERSON’S MESSAGE CONNECTICUT CHAPTER Meet The Board TEL: 860.913.2550 CONNECTION 1.800.FIGHT MS (344.4867) his March at the chapter’s Annual Meeting and quarterly FAX: 860.761.2466 Board of Trustees meeting, board members and officers www.ctfightsMS.org were elected for the coming year. We also had the oppor- www nationalmssociety org Ttunity to recognize five members of our chapter who were chosen . . for national awards, two of whom are members of our board: Larry John W. “Jack” Betkoski, III Greenhall and Jeffrey Gross, M.D. As these awards were presented, chairperson, Board of Trustees I reflected on the board as a whole and how fortunate we are to have them championing the cause. Lisa Gerrol Our board is dedicated to funding the mission. In addition to participating in events, many board members go the distance in President and CEO their fundraising. As I mentioned 860.913.2550, ext. 52531 earlier, Larry Greenhall received the national Funding the Mission COMMUNICATIONS Award recognizing that he has over the years raised $1 million for Cynthia Bidorini MS. Also of note is Frank Mon- associate Vice President teiro. This year, in recognition of 860.913.2550, ext. 52530 his Walk MS fundraising efforts, Frank received the chapter’s new Mission Champion Award, which DEVELOPMENT recognizes individuals who raise more than $100,000 in one year. Kara Preston Our board is driven. At the be- Vice President ginning of the fiscal year, Dr. Jeffrey 860.913.2550, ext. 52533 Gross was inducted into the Na- John “Jack” Betkoski, III tional MS Society’s Volunteer Hall of Fame for Health Professionals in recognition of his dedicated PROGRAMS, SERVICES & ADVOCACY work in the field of multiple sclerosis. Board member David Carter, too, has shown relentless resolve in his fight against MS in memory Lynette J. Coleman of his late brother, Keith. In November 2015 David pledged to Vice President match donations to the chapter’s annual campaign, up to $50,000. 860.913.2550, ext. 52538 This match not only helped us achieve that goal, but his story and outreach stirred more people to get involved. This year, we elected David chair-elect. We are also fortunate to have members like Alec EDITOR IN CHIEF Burger, Vice Chair of the Board, who leverage their networks to Jacqueline Sembor help support the cause - as Alec has done each year for the annual MS Dinner of Champions as well as our Golf MS tournament and GRAPHIC DESIGN Walk MS. Hal Wood Our board is talented. By tapping into the special skills that each of our board members bring to the table, we have formed SPECIAL THANKS 11 committees to help with legal and fiduciary responsibilities for overseeing chapter goals, business operations and implementing the Society’s strategic plan. Jim Birchall, a CPA and certified financial planner who previously initiated our highly effective investment committee, continues as our treasurer, and Selma Searfoss, a social worker who chairs our financial assistance committee, continues as CALL TO ACTION our board secretary. Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life I hope that the next time you see someone with a ‘Board Member’ for many people with multiple sclerosis (MS). The National Multiple name tag at an event or program, you stop and say hello. We’d love Sclerosis Society’s medical advisors recommend that people with to meet you and hear how we can best serve our chapter and make MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage it stronger. symptoms. The National Multiple Sclerosis Society is committed to ensuring that people with MS have the information and quality care that they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National Multiple Sclerosis Society today at nationalMSsociety.org or 1.800. FIGHT MS to learn about ways to help manage multiple sclerosis John “Jack” Betkoski, III and about current research that may one day reveal a cure. Chairperson For Julie

n typical MS fashion, Julie Bodnar now knows that her multiple sclerosis probably started soon after her first child, Gianna, was born – even though a diagno- Isis came much later in life when her daughter was seven and her second child, Julian, was five. “I was experiencing what I now know to be some common symptoms of MS, a squeezing sensation in my torso, numbness in my left leg and all fingertips, and extreme fatigue,” Julie recalled. “I tried to understand and decipher what was happening to my mind and body, but doctors were giving me absurd responses. It wasn’t until 2002, when a family friend referred me to another doctor, who called for an MRI that I received an answer.” When Julie first heard the words, “You have MS,” she had no idea what it meant, or, what to expect. Both scared of the potential and slightly relieved to at least have an answer, Julie turned to her family for support. by Jacqueline Sembor “Of course my initial response was of the ‘Why me and Senior Communications Specialist what now?’ persuasion, but then you fight it,” continued Julie, who lives in Suffield with her family of four. “You move on. You set and strive to achieve goals. You continue planning for the future, even if that means taking into account your MS. And thankfully, my family is here to take the journey with me.” During the first year, Julie and her husband, Bogdan,

4 Mike Marques Photography Mike

say that they were on different pages in learning dinners. “He told me, ‘Mom, I am going to sign up how to wade through all the implications of the for the Bike MS ride and raise money for you so we diagnosis. But, with strong communication, they can fight this together.’ I was unbelievably touched made advances and in 2004, Bogdan found a way to – there really are no words to describe the emotion.” demonstrate his commitment to Julie and the family The then Suffield High student had searched they created together. the National MS Society, Connecticut Chapter’s “I wanted to get involved, get more information website, inspired by a distant memory of standing at and do something to help my wife,” said Bogdan. “So a Bike MS finish line waiting for his father to come I signed up for Bike MS. I rode 75 miles in the rain, in from a daylong journey. Online, Julian discovered and even got a flat tire with just a few more miles to the many cycling opportunities and registered for the go. But, I rode on, because I was riding for my wife.” Connecticut Chapter’s Bike MS ride. It was the tangible way of him saying ‘I love you, “The meaningfulness of the day my dad rode must and we’re in this together,’ that brought tears to have stuck with me,” began Julian, now 18 and about Julie’s eyes. to graduate from Valley Forge Military Academy in “It meant the world to me when he rode,” she said. Wayne, Pennsylvania. “In 2012 I felt like it was time “I understood that fundraising was important, but for me to step up, too.” for me his ride was about us and our fight, together. That year, the young cyclist sported bib number Ever since then, we’ve been heading in the same two symbolizing his position as the second top fund- direction, always in sync.” raiser at the ride. Slowly and steadily Julian increased So, it was even more moving when years later for his presence at Bike MS – first, by doubling his Julie’s birthday, their 14-year-old son shared his own distance year over year, and then, by adding family Bike MS plans. members to his team. “I remember exactly how I felt when Julian shared “I always want to keep advancing; I want to set his present with me,” said Julie, noting that the sur- the bar higher each year,” explained Julian. “I’ll never prise was revealed over one of their coveted family stop trying.”

5 In fact, in 2015 Julian brought in reinforcements “To know that my kids think so much of me to in the form of his older sister. Gianna, a student at even consider riding in support of my MS makes me UConn’s School of Business, had also been looking the proudest mother,” said Julie, clearly touched at for a way to join the organization that was searching the thought. “They’re always present when it counts for a cure for her mother’s illness. the most.” “Not a day goes by that I don’t see my mother More than 6,500 Connecticut residents, like Julie fighting to stay strong, when it’s us who should be Bodnar, are affected by multiple sclerosis, a poten- staying strong for her,” said Gianna. “Julian had spo- tially debilitating disease. The cause is unknown ken highly of the Society after participating in Bike and there is currently no cure for MS. Symptoms MS, so I wanted to do something on my own, too.” can include numbness in the limbs, difficulties with After a semester of working behind the scenes 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. Julie maintains the goal of not losing mobility, and works with a personal trainer twice a week. Together, they focus on balance, strength training and mobility while remaining vigilant of not overworking her body. “Like most people who are battling MS, I have my good days and my bad days,” shared Julie, who still struggles with occasional numbness and the hall- marked MS fatigue. “But knowing that my children have grown into more compassionate people because they have witnessed what I am going through makes my battle even more meaningful. I am extremely fortunate to have such a supportive family.” Aware of the weight of their gesture, the siblings organizing Bike MS as a volunteer with the Con- were determined to ride hard for their mom. After necticut Chapter, Gianna, too, was ready to ride. renting a bike for practice runs, Gianna was prepared “Gianna and I formed the team ‘For Julie’ and for her ride and said she really enjoyed the experience. began fundraising,” said Julian. “I was energized by She even met another rider who matched her pace for having recruited her to Bike MS and was motivated the 25-mile route, exchanging stories about who in- by the fact that, together, we were making more of spired them to participate in Bike MS along the way. an impact.” “There were a few points in the ride where sup- Funds raised by the National Multiple Sclerosis porters along the road held up signs, rang cow bells Society, Connecticut Chapter, through events such and cheered us on,” Gianna remembered. “To me as Bike MS, ensure ongoing scientific research to that support was a lot like the message we try to send find better treatments and a cure, as well as help to to everyone battling MS: we can work through the provide vital programs and services offered by the tough hills and relapses together, and we’ll always chapter to those in the state living with multiple cheer on your progress. We’ll be here to encourage sclerosis. and support you to ensure you make it through.”

6 And Julian, who was simultaneously tackling the Although there are two separate rides, there is only 100-mile course with 38 other registered Windsor one destination in mind for these cyclists — a world riders, was feeling all the hills. free of MS. “The first 30 miles I was energized and excited, and Bike MS is a physical challenge for cyclists of ev- then I began to tire,” explained Julian. “I hit a point ery level, but it’s so much more than just a ride. The where my body was just going through the motions camaraderie, passion and memories that come from and my mind was somewhere else completely. After sharing the experience with family, friends and team- mile 60, the closer I got to the finish line the more mates last a lifetime. Finish line festivities include exhausted I was. Those last miles felt the longest.” a barbeque lunch and beer garden, entertainment, Despite having never ridden that great a distance local vendors offering product samples, free massage before, Julian was determined to finish strong, just therapy and more. like his father had years before. “The 100-mile route of Bike MS is the highest test of physical strength I’ve ever endured,” said Julian, who noted that because he was away at school in Philadelphia, had only trained for one week before the event. “And as if that wasn’t enough, with three miles left to go I got a flat tire – just like my dad.” Julian fought against his bike and the terrain to complete the ride. He thought about his mother’s ongoing battle, and the fatigue she fights through every day. “The second I crossed the finish line I dismounted my bike, let it fall to the pavement, and then I laid down right beside it as the staff of the Society and my awaiting family members gathered around and cheered,” he remembered. This year, Julian will once again saddle up for Bike Community partners include main media sponsor MS’s 100-mile route in Windsor, but he says this Serendipity Magazine, Connoisseur Media’s FOX time he’ll be better conditioned for the course. And, 99.9 and WRCH Lite 100.5, which has supported he’s recruited his father to ride again, too. and promoted the ride for almost 30 years. “Every bit helps, and I’m excited to join my kids,” “Bike MS has come to mean so much more than said Bogdan, noting Julian has always borrowed his raising funds,” said Julian. “It’s become something father’s ’85 Univega for the ride, but will have to get a we can do as a family for mom. For Julie.” new one this year. “The kids might have had to grow up a bit faster than their peers in order to help out at home, but they’ve always been so great and try to For more information on the 2016 Bike do more than we ask. It’s a reminder that we’re all in MS Praxair Off the Chain Ride, presented this together.” by Griffin Industrial Realty and Louis Dreyfus Company, or to donate, visit The 2016 Bike MS Praxair Off the Chain Ride, ctfightsMS.org. presented by Griffin Industrial Realty and Louis Dreyfus Company, will be held Sunday, June 5, in Windsor and Sunday, June 12, in Norwalk.

Photos by Mike Marques Photography 7 An MS Research Revolution

RESEARCH ROUND-UP: MAY 2016

STOP RESTORE END

OCT Eye Imaging Provides were randomly assigned to receive either phenytoin or a pla- Window To MS Progression cebo for three months to assess whether the pill could help protect the retina from damage. In a four-year study published in Annals of Neurology, a col- The team used medical imaging technology called optical laborative team of 15 U.S. researchers confirmed that Optical coherence tomography (OCT) to measure the thickness of Coherence Tomography findings reliably reflect overall brain the retina at the beginning of the study and again six months degeneration. later. The investigators found that on average those who Optical Coherence Tomography (OCT) is a non-invasive, received phenytoin had 30 percent less damage to the nerve relatively inexpensive and well-tolerated imaging method fiber layer compared to those who received the placebo. through which a small machine scans the nerves in the back “Protecting nerve fibers from damage during the course of the eye. The technique has been increasingly used as a re- of MS has the potential to prevent disability, which is a key search tool to detect damage at the back of the eye, and there goal of MS research,” said Raju Kapoor, M.D., one of the has been growing evidence that OCT findings can mirror study’s lead researchers. “If further studies of this or similar MS-inflicted damage that occurs in the brain. neuroprotective approaches are successful, it could change In this study, researchers evaluated 107 people with relaps- the future for people living with MS.” ing-remitting, secondary progressive or primary progressive multiple sclerosis. The team conducted high-definition OCT Researchers Recruiting African- scans twice a year and high-powered MRI scans once a year Americans With MS For Genetics Studies for four years to track and compare changes in nerve layers Investigators at the University of California, San Francisco at the back of the eye with changes in brain tissue integrity (UCSF) are conducting research exploring the genetic basis and degeneration. of MS in African-Americans. The UCSF team is asking After four years, a comparison of the long-term MRI and for the donation of blood samples from African-American OCT results suggested that the rate of tissue thinning seen MS patients and also healthy controls without MS. It is not on OCT reliably mirrored overall brain degeneration, with required, but the participation of certain family members is a specific layer of the retina showing atrophy at similar rates preferred as well. as specific brain regions. These findings suggest that OCT Genes are known to play a role in determining who is results reflect underlying disease progression and further val- susceptible to developing multiple sclerosis, and may also idate the usefulness of OCT as an important tool for tracking influence the course of the disease. People living with MS MS and the impacts of clinical trials. can make a difference in studies searching for these genes Epilepsy Pill May Protect Against by donating their DNA from blood samples. Identifying the exact location of MS genes could help determine who is at MS-Related Nerve Damage risk for developing the disease and may provide clues to its A medication commonly used to prevent seizures in epilepsy cause, prevention and better treatment. could protect nerves in the eye from damage and also has Focusing on ethnic groups with lower susceptibility to MS the potential to slow the accumulation of disability in people (such as African-Americans) and higher susceptibility (such with MS. as individuals of Northern European descent), and searching In the Phase II clinical trial published in January’s The for what is common and what is different in their genes may Lancet Neurology, researchers recruited 86 people who were help pinpoint regions that contain MS genes. Large numbers experiencing early symptoms of acute optic neuritis. They of participants are needed to accelerate this research. 8 PREMIER NATIONAL SPONSOR

NATIONAL SPONSOR It is not necessary to travel to San Francisco to participate in this study. Once individuals have completed the initial online intake form and have agreed to participate, they are emailed the links to two additional online forms CONNECTICUT TITLE SPONSOR and sent a kit via express mail. The kit includes a consent form, a health information privacy form, and a medical records release form. The kit also includes everything necessary for the blood draw, which can be taken at a local PLATINUM SPONSORS Quest Diagnostics Lab, where the blood can be drawn and then returned in a prepaid envelope to the UCSF MS Genetics Lab. There is no cost to the study participants. GOLD SPONSOR To participate or request additional information, ASSA ABLOY please complete a brief intake survey at redcap.ucsf.edu/ surveys/?s=RPKGc4 or email [email protected]. SILVER SPONSORS High-Dose Vitamin D Regulates 4AllPromos/4AllGifts • Biogen Immune Responses Castleton Commodities International LLC There is growing scientific evidence that low levels of vita- BRONZE SPONSORS min D in the blood are a risk factor for developing MS. In Advanced Wheels • All American Waste lab mice, vitamin D can reduce the effects of EAE, an MS- Associated Neurologists of Southern Connecticut, P.C. like disease in mice, and some evidence suggests it may Datto, Inc. • Harte MV-1 of Connecticut • Lydall, Inc. impact ongoing disease activity in people with MS, too. Investigators from Johns Hopkins University School of Mallinckrodt Pharmaceuticals Autoimmune and Medicine randomly assigned 40 people with MS to receive Rare Diseases Business either 800 IU of vitamin D, or 10,400 IU, daily for six Quinoco Energy Services • Unilever months with the goal of determining the safety of and USA Hauling & Recycling, Inc. • Yale University effects on immune activity markers. Participants main- tained standard disease modifying treatment throughout IN-KIND SPONSORS the course of the study. Blood tests were done after three and six months to determine whether the dose increased the levels of vitamin D in the blood and immune effects. MAIN MEDIA SPONSOR Results showed that high-dose vitamin D supplemen- tation increased vitamin D levels in the blood, was safe and tolerable, and reduced the proportion of immune cells MEDIA PARTNERS that are thought to drive disease. While this trial was too small to detect differences in disease activity, a larger, So- ciety-sponsored trial of vitamin D is currently recruiting participants at Yale in New Haven.

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. Stem Cells, HSCT and Other Promising Approaches to Treating MS

he National MS Society is a driving force of mul- reported suggesting that after three years, 78.4 percent of tiple sclerosis research to stop MS in its tracks, participants experienced no new disease activity. When restore function that has been lost and end MS complete results are available, they will be an important Tforever. Our current investments total $90 million to addition to research needed to determine whether this drive solutions that will assist every single person with approach to stem cell transplantation is safe and effective MS to live their best lives. To make the most progress for in people with MS. everyone, we pursue all promising paths. One of these Adult Mesenchymal Stem Cells to Reduce paths is stem cells. There is exciting progress being made through innova- Disease and Augment Repair tive research related to the potential of many types of stem Another experimental approach being tested in clinical cells both for slowing MS disease activity and for repairing trials is similar to HSCT, except that the individual’s im- damage to the nervous system. The Society is currently mune cells are not destroyed or replaced. An individual’s supporting 12 research projects exploring various types of own mesenchymal stem cells are isolated from the bone stem cells, including cells derived from bone marrow, fat marrow or blood stream and multiplied in the lab, and and skin, and has supported 68 stem cell studies over the then re-introduced in greater numbers into the body. past 10 years. This approach is being tested in several clinical trials including: HSCT to Reboot the Immune System One type of procedure that has been explored for several n A small, open-label, Phase I clinical trial at Cleveland years in multiple sclerosis is called “autologous hemato- Clinic tested the ability of an individual’s own mesenchy- poietic (blood cell-producing) stem cell transplantation,” mal stem cells to both inhibit immune mechanisms and or HSCT. This procedure has been used in attempts to to augment intrinsic tissue repair processes in people with “reboot” the immune system, which is believed to launch relapsing forms of MS. The National MS Society provided attacks on the brain and spinal cord in people with MS. support for a pilot study related to this trial to compare In HSCT, these stem cells (derived from a person’s stem cells from people with MS and controls without MS, own bone marrow or blood) are stored, and the rest of the looking at how the cells survive and function, to enhance individual’s immune cells are depleted by chemotherapy, understanding from this stem cell trial. This trial, which radiation or both. Then, the stored stem cells are reintro- was designed to evaluate safety and not designed to de- duced to the body. The new stem cells migrate to the bone termine benefits, was completed and preliminary results marrow and over time produce new cells, repopulating were presented in September 2014, suggesting that this the body with immune cells. The goal of this currently approach was safe and warrants a Phase II trial, which is experimental procedure is to have the new immune cells now in planning stages. no longer attack myelin or other brain tissue, providing the person, what is hoped to be, a completely new immune n A small, open label, Phase I stem cell trial has begun system. at the Tisch MS Research Center of New York using This approach is being investigated in Canada, the individuals’ own mesenchymal stem cells to derive more United States, Europe and elsewhere. For example: specific stem cells called “neural progenitor cells.” The cells are expanded in the laboratory and then injected into the n An international clinical trial of this procedure, being space around the spinal cord (intrathecal). The goal is to led by Richard Burt, M.D., of Northwestern University inhibit immune mechanisms and to augment tissue repair. in Chicago, is now recruiting individuals who have not responded to other disease-modifying therapies. n An international, placebo-controlled, Phase II stem cell trial involving people with MS who show specific signs of n A multi-center, five-year trial called the HALT inflammation and active disease, including people with MS (High-Dose Immunosuppression and Autologous primary progressive MS, secondary-progressive MS and Transplantation for Multiple Sclerosis) Study was relapsing-remitting MS, is underway at multiple sites completed in 2015. It tested HSCT in people with MS in Europe and Canada. The “MESEMS” trial will test who have active disease that was not controlled by dis- benefits and safety of using individuals’ own bone marrow ease-modifying medications. Interim results were recently cells, which are extracted and then given by intravenous

10 infusion immediately or six months after extraction. The or iPSC. The potential advantage of this approach is goal is to inhibit immune mechanisms and to augment that it’s possible such cells would not be rejected by the tissue repair. person’s immune system, and this approach bypasses possible ethical concerns connected with human em- n A small, open label, Phase I trial of stem cells derived bryonic stem cells. from placenta (known as “PDA-001” manufactured by This research is still in its infancy as studies proceed Celgene Cellular Therapeutics) was completed in 2014, to determine whether any types of stem cells can reverse and results suggested this approach was safe. The study MS damage and restore function. involved 16 people with relapsing-remitting or second- In November 2015, the International Conference on ary-progressive MS at sites in the U.S. and Canada. This Cell-Based Therapy for Multiple Sclerosis convened in study was designed to evaluate safety and not designed Lisbon, Portugal under the auspices of the International to show effectiveness. In the published paper, researchers Advisory Committee on Clinical Trials in MS, a group comment that the next step, a proof-of-concept clinical jointly sponsored by the National MS Society and the trial, is planned. European Committee for Treatment and Research in Multiple Sclerosis. More than 70 leading researchers n A placebo-controlled, Phase II stem cell trial involving and clinicians reviewed current experience with, and people with secondary-progressive MS and primary pro- value of, specific cell-based therapies. They conferred on clinical trials needed to provide answers about which gressive MS has begun at Frenchay Hospital in Bristol, types of cells, which route of delivery, and which types United Kingdom, testing the benefits and safety of using and stages of disease, would be the most promising individuals’ own bone marrow cells. The cells are extracted approach for treating MS. A review of the findings and and then given by intravenous infusion immediately or consensus on next steps will be published by the con- one year after the extraction. The goal is to inhibit immune ference organizers, with recommendations to help speed mechanisms and to augment tissue repair. the development of new cell-based treatment solutions. Other Stem Cell Research At present, there are no approved stem cell Another line of stem cell research in MS relates to efforts therapies for MS. Stem cell therapy is in the to repair nervous system damage directly with stem cells experimental stage, and it’s important for that may replace the cells that make myelin, and nerve people to have the best available information cells that have been destroyed. One exciting avenue being to understand this area of research and explored in early stages is the concept of taking samples make decisions related to this complex issue. For additional information, please visit of a person’s skin cells and turning them into stem cells. nationalMSsociety.org. These cells are called “induced pluripotent stem cells,”

Current Society-Supported Research

• Investigators at Yale University are evaluating • University of California, Davis researchers the transplantation of myelin-producing cells to are investigating the potential of using cells repair damaged myelin in an animal model. derived from adult skin to repair nerve-insulating • UC Irvine Health, a Comprehensive Multiple myelin damaged during the course of MS. Sclerosis Care Center, is focusing on the • Researchers at the University of Rochester Medical potential of stem cells for treating MS. Center are studying myelin repair cells in action in mice • Investigators in Milan, Italy are doing for clues to stimulating nervous system repair in MS. preclinical testing of adult stem cells (iPSC) • University of Utah researchers are exploring to stimulate repair of damaged myelin. how transplanted adult stem cells may stimulate • Researchers at Johns Hopkins University repair of myelin in a mouse with MS. are studying the ability of different types of • Cleveland Clinic investigators are determining the best transplanted stem cells to modulate the immune way to track mesenchymal stem cells in the body during system and promote repair in MS models. clinical trials of this novel strategy for treating MS. • Investigators in Paris, France are using myelin- • Stanford University scientists are devising methods to making cells from outside the brain and spinal use skin cells to produce myelinating cells in sufficient cord (peripheral nervous system) in attempts quantities for transplantation in MS models as a to repair MS damage in MS models. prelude to their possible use in people with MS.

11 or a person living with multiple sclerosis, the road to wellness involves more than treatment of the disease and its symptoms. Equally important are health promotion and strategies, satisfying personal relationships, a strong Fsupport network, fulfilling work and leisure activities, a meaningful place in the community, and adequate attention to one’s inner self. Recently, the National MS Society and MS researchers have focused attention on the area of wellness and smoking. The Office of the U.S. Surgeon General has established that smoking causes serious health problems and subsequent studies by many other groups have confirmed this. People who smoke are generally recognized to have higher rates of lung cancer, heart disease, emphysema and other respiratory problems. Smoking is known to produce shortness of breath, susceptibility to lung infections, and heartbeat irregularities. Smoking may also increase the risk of developing MS. n In 2003, Norwegian researchers determined the risk of MS was higher among smokers than among never-smokers. Focusing on n A 2005 paper in the journal Brain supported the link between smoking and the risk of developing MS, and suggested that smoking may be a risk factor for trans- Wellness forming a relapsing-remitting clinical course into a secondary-progressive course. n A 2010 study revealed that two individual factors that were previously identified as increasing the likelihood of developing MS – exposure to Epstein-Barr virus and tobacco smoking – may interact and multiply to substantially increase the Quit risk of developing MS in those with both risk factors. n Most recently, a 2015 study suggested that those who continued to smoke after Smoking receiving a diagnosis of MS were quicker to reach the secondary-progressive phase of MS than those who quit after diagnosis. These and additional bod- Connecticut also has a toll-free telephone ies of research all point quitline (1-800-QUIT-NOW) offering one- to the benefit of quitting on-one help with quitting, support and coping smoking for those living strategies, and referrals to resources and local with MS. cessation programs. But, once you decide to quit, what’s the next step? Many health care professionals can be good sources of information about the health risks of smoking and the benefits of quitting. Talk to your doctor, dentist, pharmacist, or other health care providers about the proper use and potential side effects of nicotine replacement products and other medicines. They can also help you find local resources for assistance in quitting smoking. The National Cancer Institute’s Smokefree.gov offers science-driven tools, information and support that have helped smokers quit. You will find state and national resources, free materials and quitting advice from NCI. Additionally, NCI’s Smoking Quitline 1-877-44U-QUIT offers a wide range of services including individualized counseling, printed information, referrals to other resources and recorded messages. Smoking cessation counselors are available to answer smoking-related questions in English or Spanish, Monday through Friday, 8 a.m. to 8 p.m., EST. Smoking cessation counselors are also available through LiveHelp, an online instant messaging service. LiveHelp is available Monday through Friday, 8 a.m. to 11 p.m., EST.

Wellness is a lifelong journey through which people develop an awareness of, and make positive choices about, their behaviors, lifestyle and activities that enable them to lead their best lives. Wellness is personal, multidimensional and holistic. It involves physical, emotional, intellectual, occupational and spiritual dimensions, each of which exists along a continuum. Learn more about the Society’s work on wellness and multiple sclerosis at nationalMSsociety.org. Off-Label Prescriptions — New Legislation Offers New Hope by Cynthia Bidorini, Associate Vice President of Communications n 2011, Rebecca Evenski was pursuing her dream other approved options. And even though the prac- of becoming a nurse. The 17-year-old graduated tice of off-label prescribing has been viewed as both from Naugatuck High School and began studies at legal and routine, insurance companies have denied Ithe College of Mount Saint Vincent in the Bronx. Her coverage, often times citing “experimental” or “inves- long-time passion for helping others made nursing the tigational” usage. In Connecticut, however, laws have perfect career choice, but after a year and a half Evenski been put in place to protect patients with disabling, found that she was in a position of needing help herself. chronic or life-threatening conditions. Health insurers “I regularly felt like the room was spinning and I have been unable to deny cov- had difficulty balancing. I soon realized that I couldn’t erage of off-label medications if physically continue my studies at Mount Saint Vincent,” the drug has been recognized by the now 22-year-old explained. “So I returned home to one of three standard medical Waterbury where I had the support of my family and references. enrolled in classes at Naugatuck Community College.” “Unfortunately, by 2015, two Although not at the top of her game physically, of the three medical references Evenski persevered and completed one semester at Nau- that insurance companies were gatuck. But in 2013, in the final weeks of her second required to use to determine semester, her health took a turn for the worse. coverage were out of date and “I went to the hospital several times over a period of many individuals, including three weeks with severe nausea and vomiting but was Evenski, were denied coverage sent home with a diagnosis of the stomach flu,” Evenski of medications that had been remembered. “Shortly thereafter, I developed Bell’s proven effective,” explained Dr. palsy and was admitted to the hospital. That night an Guarnaccia. “The off-label legis- insurance MRI confirmed a diagnosis of multiple sclerosis.” lation in Connecticut, which was Evenski was given rounds of steroids but her symp- designed to protect patients, was toms worsened. She lost her vision as well as control simply outdated and ineffective. It denied of her bladder. She couldn’t swallow, stand or hold her was time to advocate for change.” head up. Her physician, Joseph Guarnaccia, M.D., Others were also concerned coverage Director of the Multiple Sclerosis Treatment Center about the limitations of the at Griffin Hospital, tried a number of treatments, Connecticut Off-Label Prescrip- including those specifically developed to treat multiple tion law. When Dr. Guarnaccia of the sclerosis, but none were working. Dr. Guarnaccia then learned that Senate President Pro turned to Rituxan, a drug approved by the U.S. Food Tem, Martin Looney, was spon- medication and Drug Administration to treat cancer, which had soring a bill to make changes also shown positive results in patients with MS. A few to the law, he pledged his full weeks after her first dose, Evenski began to respond; support to the National Multiple because Rituxan was making a difference. Sclerosis Society to ensure that After nearly 60 days in the hospital, Evenski was the bill became law. Passage of it was sent home and continued to take Rituxan. She showed the bill became a priority for MS marked improvement but in August 2015 her new activists in 2015. He, along with considered health insurance company denied coverage of the med- a small group of volunteers and ication because it was considered “off-label,” meaning Society staff, began a movement that the drug was prescribed for a condition other than to change the Connecticut Gen- “off-label”... what it was originally approved for by the FDA. eral Statutes to broaden coverage “After not taking the drug for about a month, my of off-label medications by including peer-reviewed vision started to blur and I had trouble maintaining my medical literature as an acceptable reference source for balance,” Evenski recalled. “Then I experienced the MS coverage determinations. Hug – a feeling of constriction around my waist. It was Dr. Guarnaccia and his team worked closely with a tremendously difficult time for me.” Martin Looney, who introduced Senate Bill 418 to Off-label prescribing has proven beneficial for some the Connecticut legislature. Support of the bill grew patients, especially for those who have exhausted all as Dr. Guarnaccia shared how his ability to practice

13 medicine was being restricted by health insurers and how “The passage of this bill is a victory as the changes in this restriction was affecting his patients like Evenski. legislation open new possibilities for people with multiple Many patients and some physicians lobbied their state sclerosis as well as others living with disabling illnesses,” representatives to urge passage of the bill. A petition on stated Dr. Guarnaccia. “And Rebecca Evenski is a perfect Change.org was signed by more than 6,000 persons from example.” Connecticut and elsewhere. The challenges that Dr. With the legislation effective January 1, 2016, Dr. Guarnaccia faced with getting Evenski the medicine she Guarnaccia resubmitted Evenski’s prescription under a needed especially resonated with Senators Joseph Crisco new insurance plan and in February received approval for and Kevin Kelly, members of the Insurance and Real coverage. Estate Committee. While the Connecticut General Statutes have been While there was significant support of the bill, op- changed and coverage for off-label medications has been position came from those concerned that the bill would broadened, the work of Dr. Guarnaccia and other advo- raise healthcare costs in Connecticut. Dr. Guarnaccia cates is far from over. Efforts now are being focused on and the team drafted a report that showed, among other raising awareness of the changes in legislation. things, that there was no correlation between growth in In an effort to do just that, Dr. Guarnaccia and the healthcare costs between states that had updated off-label MS Society have taken to the airways, appearing on the legislation and those that did not. The bill was amended Connoisseur radio program For The People with John and passed in the Appropriations Committee. It was then Voket. Recently, Dr. Guarnaccia appeared with Evenski passed in the Senate but never called in the House, so it on WTNH’s Connecticut Style. died in the Regular Session. “We need to make sure that Connecticut residents “We were so close,” said Dr. Guarnaccia. “But we know that off-label medications may now be a viable op- weren’t giving up hope just yet.” tion for their treatments, especially if on-label medications Having support of the Senate and House leadership as have not worked for them,” remarked Dr. Guarnaccia. well as the Governor and his staff proved instrumental in While Evenski is certainly up for additional on-camera keeping the legislation alive. The language was added to the appearances, she is anxious to return to school this fall to implementer bill and passed in the June 2015 Special Session. complete her nursing degree.

Photography SelectPhotography WTNH News 8’s Marysol Castro with Dr. Joseph Guarnaccia and Rebecca Evenski Coverage Available For Certain Off-Label Drug Prescriptions

Connecticut state law now requires certain health insurance policies to provide coverage for off-label use of FDA-approved drugs for disabling or life threatening chronic conditions. It does so by: 1. including peer reviewed medical literature in the list of sources that can recognize an off-label drug for treatment

Photography SelectPhotography of a condition and thus require it to be “Ironically, the last two years have exposed me to a side of covered; medicine I couldn’t possibly have learned in the classroom,” shared 2. requiring coverage for medically Evenski. “Needless to say, though, I’m ready to get back on campus necessary services associated with the and hit the books.” administration of such a drug; 3. prohibiting denial of coverage based It is important to consult with your health on medical necessity, except for reasons care professional about all medications. For unrelated to the legal status of the drug. more information on this legislation and other It also exempts certain types of research advocacy priorities, visit ctfightsMS.org. trial drugs from the required coverage.

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15 Connecticut’s Chris Murphy Named National MS Society 2015 US Senator Of The Year onnecticut’s Chris Murphy has been chosen as one of two senators to receive the National Multiple Sclerosis Society’s 2015 Senator of the Year Award, Cthe Society’s highest honor for elected officials. Murphy received this award in recognition of his critical work and accomplishments on behalf of those living with MS. Before being elected to Congress, Murphy was a member of both chambers of the Connecticut General Assembly, serving in the Connecticut House of Represen- tatives from 1999 to 2003 representing Southington and the 81st district, and in the Connecticut Senate from 2003 to 2007 representing the 16th Senatorial District, which includes the towns of Waterbury, Wolcott, Cheshire and Southington. Currently, Murphy serves on multiple senate committees, including Appropriations; Democratic Steering & Outreach; Foreign Relations; and Health, Education, Labor & Pensions (HELP). In 2012, Murphy was elected to the U.S. Senate to represent Connecticut. He previously served in the U.S. House of Representatives, representing Connecticut’s 5th Congressional District from 2007 to 2013. While in the House of Representatives, Murphy joined the Congressio- n Co-sponsoring S. 1013, the Ensuring Access to nal MS Caucus, a bipartisan group that raises awareness Quality Complex Rehabilitation Technology Act, about MS on Capitol Hill. to help those with progressed forms of MS have That same year on the local level, Murphy appealed to their medical needs met and remain independent the state’s commissioner of the Department of Economic through access to individually configured wheel- and Community Development on behalf of the National chairs, seating and positioning systems. MS Society. He asked for support of an application which n Fighting for all Americans to have access to com- provided an allocation of Low Income Housing Tax Cred- prehensive, affordable health care and supporting its to support the development of Ojakian Commons, the Affordable Care Act. New England’s first affordable, accessible, supportive n Helping ensure the passage of a resolution rec- rental apartments for people living with disabilities ommending that federally funded facilities be needing special services coordinated by the National MS required to provide equal access to people with Society. disabilities. As Senator of the Year, Murphy was recognized in “Senator Murphy is a fervent advocate on behalf of March at the Public Policy Conference in Washington everyone affected by MS,” said National MS Society D.C. by the national board of directors of the National President and CEO Cynthia Zagieboylo. “We applaud MS Society for: his work toward improving the health and indepen- n Sponsoring the Advancing Research for Neurological dence of people with MS, and for articulating how MS Diseases Act (S. 849), which would establish a data and other complex issues affect every day American collection system to track the incidence and prev- families. We are proud to name him 2015 Senator of alence of neurological diseases including MS. This the Year.” information would allow researchers to evaluate and Murphy grew up in Wethersfield, Connecticut, and understand factors such as geographic clusters and attended Williams College in Massachusetts. In 2002, help fill current voids to move us toward a cure for he graduated from UConn Law School in Hartford. MS. He practiced real estate and banking law from 2002- n Partnering with the Society and other neurology-re- 2006 with the firm of Ruben, Johnson & Morgan in lated organizations on a Senate briefing on S. 849 Hartford. and urging his Senate colleagues to co-sponsor and pass the important legislation. For more information on Senator Chris Murphy or n Supporting increased investment in the National In- his advocacy efforts, visit murphy.senate.gov. For stitutes of Health (NIH), which received a $2 billion information on National MS Society Advocacy increase over last year’s funding levels. efforts, visit NMSS.org. 16 TRINITY HOCKEY — $10,609 In January the Trinity College men’s and women’s ice hockey teams raised funds and awareness toward the fight against multiple sclerosis. The teams hosted an ice hockey doubleheader, along with a series of side events to further increase the Trinity community’s awareness and raise money toward the fight against MS.

THE JAKE — $13,472 Greg “Jake” Jacobson hosted the third annual “The Jake” golf tournament ELEVEN GROUP GOLF last September. Jacobson, whose goal TOURNAMENT — $3,250 was to unite his passion for golf with Last summer, Don Valentas hosted the his commitment to help fund a cure, sixth annual Eleven Group Charity has raised $63,300 for the Connecticut Golf Tournament at Lyman Orchards Chapter over the last three years. Golf Club in Middlefield. The tournament featured a shotgun start, a full round of golf with several putting and driving contests, and an awards dinner. The event raised $3,250 for the Connecticut Chapter.

SANTA CHARITY PUB TOUR — $1,692 West Hartford resident Kevin O’Connell organized the 10th Annual Santa Charity Pub Tour last December. The event successfully raised $1,692. O’Connell, a member of the GET BAKED — $5,805 Since opening her Windsor shop four years Hartford Wanderers rugby club, coordinates ago, Emily Woodward has saved tips from the event in honor of friends who are living patrons at Get Baked and donated them with MS. to the National MS Society, Connecticut Chapter. This year, $5,805 in tips were donated in support of Emily’s mother, Caryn, who is living with MS.

CHILI COOKOFF FOR A CURE — $1,157 Former board member Karen — $1,391 Guarnaccia and her husband Dennis WINTER WONDERLAND organized the Old Town Annual This winter attorney Rashmi Patel hosted Chili Cookoff to benefit the National a Winter Wonderland gala to benefit the MS Society. Patrons could sample National MS Society, Connecticut Chapter. up to 12 different chili recipes for $5. The event raised $1,157 for the Connecticut Chapter.

17 Volunteer Highlight — Massage Envy

or six years, a locally owned and operated branch of on-site at the Windsor Bike MS ride to provide both pre- and Massage Envy has served as an important fixture at the post-ride massage. Connecticut Chapter’s Bike MS ride. To the average JS: Why is it important to have massage therapists on-hand Fobserver, the presence of licensed massage therapists at the at cycling events? finish line may seem like a nice bonus, but to seasoned cyclists, the service is a key to getting back in the saddle sooner. AV: Pre- and post-ride massages are key to decreasing the I sat down with Anthony Vidal, owner of three locations amount of time it will take for your muscles to recuperate of Massage Envy in our state – Farmington, South Windsor after an intense bike tour. Long hours of riding can leave and West Hartford – and learned more about why his loca- muscles full of knots and scar tissue. Massage helps loosen tions go the extra mile for community organizations. the tight spots, flush out toxic chemicals and keep muscle -fi Jacqueline Sembor: How did you come to own three Massage Envy locations in Connecticut? Anthony Vidal: Coming to Massage Envy was quite the journey. I’ve worked in a va- riety of settings, but didn’t seem to stay in any one place for more than six months. I was always striving to accomplish the goals of those above me resulting in many pro- motions to higher level positions with more responsibility and stress. In 2008, I began exploring the idea of buying into a franchise with my partner and mother-in-law. We worked with a consultant to identify which industry and brand would best fit our skill- set and passion. We discovered the health and wellness industry as a place where we could find our work meaningful. We built relationships with local franchise owners, and we eventually invested in Massage Envy. We’ve been bers smooth and limber. A pre-ride massage features rigorous with the company since 2010. movements to help warm up the muscles preparing them for JS: Why is community involvement so important to Massage performance. A post-ride massage is more about stretching Envy? muscles out to decrease healing time. AV: Overall Massage Envy’s brand promise is, “We help you JS: Can massage also be beneficial for people living with take care of you.” Above and beyond that, I have committed multiple sclerosis? my three locations to being a resource for communities which we serve because our work is based on giving care to AV: We have an employee who was diagnosed with MS others. On a one-on-one level, our therapists help our cus- four months after she started working at Massage Envy in tomers feel their best. On a larger scale, we’re about helping Farmington. The first question she asked her doctor was if our communities feel better as a whole. she could still get regular massages. Her doctor didn’t see JS: And what made you want to get involved with Bike MS? any problem with it. The more research she did, the more she saw that stress was a major factor contributing to MS AV: From the time we opened, I made a commitment to relapses. You can imagine how relieved she was to be working have my staff out in the community once a week performing somewhere where she could keep her stress low and relax on services or educational days. We go to banks, grocery stores, a regular basis. Employees receive regular massage and facial nonprofits and so many other outlets to help teach staff about services as part of their benefits package. the benefits of massage and how to help each person live their Massage Envy isn’t a day spa – we’re a membership based best life. Along with that, I’ve made it a commitment to help clinic with a vision of making total body care an integral part out at charity events. We see it as a win-win for everyone of everyone’s well-being journey. We help relieve stress, mini- involved. mize pain and stimulate muscles. Just in our three locations, Years ago I was building a home in Tolland and met Peter we will see an average of 240 people a day – 30 percent of Rusconi, who had partnered with the National MS Society those that visit us for the first time will return, and 50 per- to host a bike ride. Through his connection, I began to cent of our members will leave with their next appointment partner with the Society and have been providing services at booked because they understand and experience the benefits Bike MS since 2010. In 2016, we will have 10+ staff members of receiving regular massage and facial services. 18 The Journey To Home Lawry MS House To Open By End of 2016

new model of nursing home is coming to Connecticut thanks to the Jewish Senior Services organization. And, with funding to be raised and contributed by the National MS Society, Connecticut Chapter, one unit of the new design will be designated, in perpetuity, for those living with multiple sclerosis.A In 2014, Jewish Senior Services began development on a project utilizing the ‘household’ model of a nursing home. In the household model, long-term care homes adopt a person-centered approach that shapes the physical environment, organizational structure and interpersonal relationships in ways that create an atmosphere of a genuine home, while providing residents with clear opportunities to direct their own lives. The Jewish Senior Services household model consists of 20 ‘households’ of 14 residents, with private bedrooms and bathrooms surrounding the home’s large living room, dining room, kitchen, den and patio. Other facility amenities include a health club, 25-yard pool, fitness rooms, sauna, massage, theater for music and entertainment, restaurant with space for entertaining and celebrating with family and friends, a beauty salon, gift shop, place of worship, work activity center, clinic and more. The unit designated for those living with MS will be named the Sylvia Lawry MS House, in memory of the founder of the National MS Society. It is the only one designated for a specific disease and tailored to a younger population that is in need of nursing home care. The facility will add ceiling lifts to bedrooms as needed in the MS unit and will also increase the number of certified nursing assistants and licensed nurses to meet the needs of the residents of the unit. Anyone living with MS interested in this nursing home should fill out an application as soon as possible. For more information on this development, visit jseniors.org or call Liz Lockwood at 203.365.6400.

Multiple sclerosis brings changes and challenges not only to the person with MS, but also to their family and friends. MEETINGS Caregivers of people with MS need support too. A “caregiver” can be anyone who cares about someone living with MS, including spouses, children, parents and friends.

Caregivers are invited to a meeting to talk about the impact of MS on their lives and share struggles and solutions with each other. WETHERSFIELD Saturday, July 16, 2016 BROOKFIELD Saturday, September 24, 2016

To register, contact Amy Watkins at 800.344.4867 or email [email protected]

Funding for this program was generously provided by:

Hayley's Hope & Michaela's Miracle MS Memorial Fund

19 EM noticias en español

Manténgase Fresco este Verano Traducción por: Maria Reyes-Velarde, MD, MPH Para muchas personas, el calor intensifica temporalmente los síntomas de la esclerosis múltiple. La fatiga, la debilidad y los problemas visuales son algunos de los problemas que pueden incrementarse cuando la temperatura del cuerpo aumenta tan poco como un solo grado. No hay evidencia de que el calor empeore la enfermedad, pero sí afecta el paso de los mensajes en los nervios y puede causar sensación de debilidad en los brazos y piernas o fatiga. Esto puede pasar también luego de realizar un ejercicio vigorosamente o en la fie- bre. Recuerde siempre consulte con su profesional de salud cualquier preguntas sobre sus síntomas de la esclerosis múltiple. A continuación hallará unos consejos que le pueden ayudar a mantener el cuerpo fresco.

n Tome muchos líquidos, especialmente agua fría. Evite la cafeína pues tiene un efecto diurético. n Use abanicos, aire acondicionado o botellas con atomizador/ rociador. La compra de aires acondicionados puede ser deducible de impuestos con un documento de su médico. n Haga ejercicios en un ambiente fresco. Escoja la parte del día que sea más fresca. Use aires acondicionados o abanicos para mantener la temperatura corporal a un nivel apropiado. Haga ejercicio en agua templada (se recomienda entre 80 y 84 grados ˚F); es una manera excelente de combatir el calor durante la actividad física. n Utilice ropa diseñada para enfriar el cuerpo como chalecos, bandas en la cabeza y cuello que muchos atletas utilizan. Una toalla húmeda, sombreros de ala ancha y ropa holgada de colores claros también pueden ayudar. n Trate “enfriándose previamente” metiéndose en una tina con agua templada. Ésto disminuye los efectos del calor generado en el ejercicio y retrasa el tiempo que toma en aumentar la temperatura corporal. n Un baño o duchazo frío también puede ayudar a reducir la temperatura corporal luego de la actividad física o de exposición al calor.

No deje que el calor lo desanime. ¡Encuentre las estrategias que funcionan para usted y disfrute del verano!

Content Contributed by Moyra Rodon, LCSW Senior Director, Counseling Programs and Hispanic Outreach National MS Society, Southern New York Chapter

20 Stress Wellness In Multiple Sclerosis Integrating Lifestyle & Complementary Strategies Into MS Care

Everyday Strategies To Help Get aving any chronic illness can increase stress. Multiple sclerosis is no excep- Everyday Stress Under Control tion. In fact, stressful situations that are lan ahead in situations that could cause stress. Take a book with you if Hcommon with MS include the unpredictability P waiting may be necessary. of the disease, financial stress and concerns Get extra sleep before family gatherings or important events. about employment and the need to adjust and readjust to changing abilities. These subjects Learn to say no. You don’t have to do anything if you don’t have the time, energy or desire. are just as important to discuss with health care providers as treatment options, but often are left Make your requests for help as specific as possible: “Would you please help me by....” out of the conversation. To aid people in addressing factors like stress, If old interests and activities become more difficult or too time consuming, replace them with new ones that fit your current needs. the Society has created the Wellness Discussion Guide for people living with MS and their Get very practical: health care providers. This guide offers up-to- lMake an extra set of keys. date information about wellness and multiple lUpdate your telephone/address directory. sclerosis – including evidence based strategies in lKeep the car and other important appliances in good the areas of diet, physical activity & exercise, and working order. of course emotional wellness. lIf small things you need don’t work, get new ones: shoelaces, In addition to summarizing key findings, this alarm clock, can opener. guide links to more comprehensive information lKeep a good supply of small items you use all the time: toilet about each topic in Society publications (i.e., paper, batteries, stamps, change for the bus. Wellness for People with MS), journal abstracts Do the unpleasant things early in the day so that you don’t have to worry and other resources. Each section highlights about them. important points for discussion, and provides Make a 3/4 rule: fill the gas tank when it is 3/4 empty; order more the opportunity for the person with MS to medication when it is 3/4 gone; replace juice when the quart is 3/4 gone. record questions for health care professionals, When you find a task difficult or stress producing, try to find a better way of list personal goals and identify steps to take to doing it. If you can’t think of an easier way, ask a friend to help you look at achieve those goals. the problem. For example, in the emotional well-being If the morning rush is stressful: section of the Guide, various techniques such lGet up 15 minutes earlier. as exercise, phone-delivered physical activity counseling, meditation and adaptive coping lAsk someone else to take on a morning task. and solution-focused coping are explained as lDo some of the preparation the night before. possible solutions to mood management. The lMake sure that all your morning tasks are absolutely necessary. Guide then provides space to outline questions Use your imagination to get yourself used to an event you are not looking for health care providers about mood and stress forward to. You need to visit a new doctor? Imagine what you are going to management, goals for stress management, next wear, what questions you want to ask, what questions will be asked of you. steps and opportunities for others to provide Think about the visit the way you would like it to be. Then imagine the worst support with stress management. thing that could happen and how you would deal with it. Use the Guide in ongoing conversations Schedule rest periods. about wellness and lifestyle strategies to pose Do one thing at a time. Don’t think about the next task before you questions, outline goals and share decisions. have finished the one you are working on. Let yourself feel a sense of Together, people living with MS and their health accomplishment before moving on. care providers can identify strategies to optimize Eat regular, balanced meals. Keep prepared foods in the house for times overall wellness with MS. when you don’t feel like cooking or shopping. Reduce reliance on cigarettes, caffeine, and alcohol. Ask your doctor for help Free Wellness Discussion Guide if necessary. Ask for help when you need it. Download this free resource at Use support and education services. Let the experiences of others help you nationalMSsociety.org solve problems — and vice versa. or call 1-800-344-4867

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 TORRINGTON 3rd Wednesday, 5:30 p.m. 2nd Saturday, 1 p.m. 2nd Wednesday, 7 to 8:30 p.m. James Blackstone Memorial Library Wadsworth Glen, 30 Boston Road VNS of Connecticut, 65 Commercial Blvd. 758 Main Street Mary at 860.828.5240 Amy Watkins at 800.344.4867 Cheryl at 203.535.3053 Professionally facilitated

MILFORD TRUMBULL DANBURY 2nd Saturday, 1:30 p.m. 3rd Tuesday, 6:30 to 8 p.m. 2nd Wednesday, 7 to 8:30 p.m. Milford Hospital, 300 Seaside Avenue Trumbull Library, 33 Quality Street Main Street Rehab Center, 235 Main Street Debbie at 203.878.6661 or Amy Watkins at 800.344.4867 Amy Watkins at 800.344.4867 John at 203.874.1225 Professionally facilitated VERNON NEWINGTON 2nd Friday, 6 to 8 p.m. DANBURY Caregivers 2nd Thursday, 12 to 2 p.m. Trinity Lutheran Church 2nd Wednesday, 7 to 8:30 p.m. Newington Senior and Disabled Center 20 Meadowlark Road Main Street Rehab Center, 235 Main Street 120 Cedar Street Patty at 860.874.3220 Joe at 203.264.2252 Charlie at 860.667.1314 or Tom at 860.236.2751 WATERBURY DERBY NEW LONDON 3rd Monday, 6 p.m. 3rd Wednesday, 4:30 to 6:00 p.m. 4th Wednesday, 6:30 p.m. Village at East Farms, 180 Scott Road Griffin Hospital, 130 Division Street Lawrence & Memorial Hospital Jackie at 203.753.2708 Lisa at 203.231.4716 365 Montauk Avenue Eileen at 860.442.0711, ext. 4990 or 860.625.1024 WEST HAVEN GRANBY Professionally facilitated Every Thursday, 11:15 a.m. 2nd & 4th Monday, 1 to 3 p.m. West Haven VA Hospital, Building 2, 3rd floor Granby Senior Center 950 Campbell Avenue 15 North Granby Road NORWALK Mary Lou at 203.932.5711, ext. 2276 Meaghan at 860.428.2463 1st Friday, 1 to 3 p.m. Open to veterans only. Professionally facilitated. South Norwalk Library, 10 Washington Street Erica at 203.984.7027 GREENWICH 2nd Saturday, 1 to 3 p.m. NORWALK 125 Greenwich Ave., Mara Investments Paula at 203.629.7053 1st & 3rd Tuesday, 1 to 3 p.m. Triangle Community Center, 618 West Avenue Ed at 203.807.0194 HAMDEN Group for LGBT people and their allies with MS 3rd Saturday, 11 a.m. The Playwright, 1232 Whitney Avenue PLAINVILLE Paul at 203.213.5466 3rd Monday, 7 to 9 p.m. Wheeler Clinic, 91 Northwest Drive HARTFORD Irma at 860.793.9272 Last Tuesday, 6 p.m. Mandell Center, 490 Blue Hills Avenue SHELTON Stacy at 860.502.5973 or Ashley at 203.583.0169 2nd Monday, 2 to 3:30 p.m. Plumb Library, 65 Wooster Street Be sure to visit ctfightsMS.org and Amy Watkins at 800.344.4867 click on the “Services and Support” MANCHESTER button to find out the most up- 1st Monday, 10 a.m. STORRS Presbyterian Church of Manchester to-date information on the vital 394 Lydall Street 2nd Tuesday, 6:30 p.m. Karen at 860.746.4247 or Mansfield Senior Center, 303 Maple Road programs and services offered by Nancy at 860.742.5155 Joan at 860.429.7271 the Connecticut Chapter.

22 COMMUNITY PROGRAMS

— MS Community Day UPCOMING Join the National MS Society, Connecticut Chapter, for MS Community Day 2016 with the New Britain Bees on PROGRAMS Friday, May 20, as they take on York Revolution. Tickets to the game are $10 per person and some financial assistance is available. The evening includes a barbecue dinner before the game on the patio. Making Sense is an information and social Gates will open at 5:05 p.m. and the game will be- meet-up group for people diagnosed with gin at 6:35 p.m. Accessible seating is available. multiple sclerosis within the last five years. Made possible through the Hayley’s Hope & Michaela’s Miracle Drop into a local Panera Bread, listed below, MS Memorial Fund. to get your questions answered and to meet a small group of others who have been The National MS Society’s annual MS recently diagnosed with MS. Vacation Week, like any other camp, offers campers a Panera Bread Meriden chance to swim, boat and relax. This year, the Connecticut Chapter will host MS Vacation Week Sunday, June 19, Tuesday, September 13 through Friday, June 24. 533 South Broad Street, Meriden The weeklong respite takes place at Oak Hill’s Camp Hemlocks in Hebron. Camp Hemlocks is specially designed Panera Bread Farmington for full accessibility, and the facility provides a unique Tuesday, December 13 environment allowing for optimal opportunity and inde- pendence, no matter what a person’s level of ability may be. 1600 Southeast Road, Farmington Additional activities at MS Vacation Week include All meetings are from 6:30 - 8:00 p.m. arts and crafts, nature walks, archery, a scavenger hunt, yoga, field games, campfire karaoke, a talent RSVP required by the Monday before each gathering. show and even a “drive-in” movie night. Educational For more information or to RSVP, contact presentations on symptom management, research and animal therapy will also be offered to the campers. the National MS Society at 800.344.4867or email: [email protected].

On The Move is a social gathering for people in their 20s Can Do MS Webinar & Telelearning and 30s living with multiple sclerosis. Join the Connecticut Building Your Wellness Strategies Chapter for food and drinks and meet others who know Series: what it’s like to live a life on the move with MS. Meetings The 2016 MS Webinar & Telelearning are scheduled for 6:30 – 8:30 p.m. once a month on the third Wednesday in Derby at the Valley Diner and the Series brings together a collaboration of MS fourth Wednesday in Windsor at Union Street Tavern. experts to help you build strategies to live RSVP is required by the Monday before each meeting. your best life with MS. Each free webinar and telelearning program features two COUPLES WEEKEND presenters with time for Q&A. Join online or Having a satisfactory relationship is hard work even in the by phone. best of times. The Connecticut Chapter Couples Retreat Weekend is designed to help you and your partner mini- Tuesday, June 14: Traveling with MS mize the impact of multiple sclerosis and take charge as a 8 – 9:15 p.m. couple through a creative mix of interactive sessions. Join the National Multiple Sclerosis Society, Connecticut Register at nationalMSsociety.org/ Chapter, for Couples Retreat Weekend on Saturday, August telelearning or call 1.800.344.4867. 27, and Sunday, August 28, at the Hilton Garden Inn in Glastonbury. Made possible through the Hayley’s Hope & Michaela’s Miracle MS Memorial Fund. For more information on these programs or to register, please contact Amy Watkins at 800.344.4867 or email [email protected].

23 2016 TI Polar Bear Plunge Raises More Than $100K for MS

ore than 100 polar bear plungers gathered at participation has taken off, benefiting a new charity with Westport’s Compo Beach on New Year’s Day each new year. 2016 to plunge into Long Island Sound in “We decided to pick a new charity every year because Msupport of the National MS Society, Connecticut Chapter. the goal was to get everyone in the community to par- The group, organized by Tom Patterson, was successful in ticipate,” Patterson continued. “Someone might not be raising more than $100,000. interested one year, but if the charity of choice really hits “Nine years ago in November, my friend dared me home the next year, they might just dive in.” to plunge into Long Island Sound while we were at the Patterson shared that after his co-founder’s wife was di- beach for a play date with our children,” said Patterson, agnosed with multiple sclerosis, the choice of the National of Weston. “I was initially not interested at all. But then, MS Society as a plunge beneficiary was a no-brainer. I went home and began thinking about how such a chal- In all, more than $104,000 was raised for the Connecti- lenge posed to the greater community could help local cut Chapter. Next year for the event’s 10th anniversary, organizations. The TI Polar Bear Plunge was born.” Patterson says he’ll invite plungers to choose one of the The first year the event raised $14,000 for the Inter- nine previous charities to support when they take the dive faith Housing Association. Since the inaugural event, into Long Island Sound.

CAPE COD, MA – SEPTEMBER 9-11, 2016

24 PAID ADVERTISEMENT PAID

MEET THE CHALLENGE

BOSTON May 14/15 NEW JERSEY June 25/26 Join the team of muckers who have raised nearly $22 million for the Society! register at ctfightsMS.org PAID ADVERTISEMENT PAID

Learn Learn from people living with MS, those who care about them and MS experts on a wide range of topics.

Tainted Inc. offers makeup applications for all of your special occasions, Share and makeup lessons to Sharing your story connects you to the teach you how to utilize community and gives strength and hope to the products you already own! others. Contact our studio to learn more!

Connect Join discussions and groups to connect with people like you, share your experiences and get support. Connect now at MSconnection.org

25 Bike MS Get Connected with the Sunday, June 5 Griffin Center Business Park CONNECTicut Chapter Windsor Sunday, June 12 Sign up to receive society emails at Cranbury Park nationalMSsociety.org/signup Norwalk Golf MS Talk to an MS Navigator! 2016 Thursday, September 29 Call us at 800.344.4867 CALENDAR Lake of Isles OF EVENTS North Stonington Join the MS Activist Network at MS Happy Halloween Hour nationalMSsociety.org Thursday, October 13 and use keywords “Advocate for Change.” The Society Room ctfightsMS.org Hartford Get Connected at MSconnection.org. Get Connected MS Luncheon Get your Social Security questions answered Friday, October 21 Hartford Marriott Downtown by emailing [email protected] Hartford MS Dinner Of Champions Thursday, November 17 Stamford INFOLINE: Dial 211 for 24-hour counseling.

TRAVEL GUIDES CLASSIFIEDS IN THE RAYMOND P. HOWELL LIBRARY FOR SALE Brand new, never used Hoveround Chair. Must BARRIER-FREE TRAVEL: sell! Grey with brand new batteries and charger. A Nuts and Bolts Guide for Extremely comfortable with extra thick padding. Wheelers and Slow Walkers Special wide and extra strength, foldable three- Third Edition panel Hoveround wheelchair ramp. Still in the by Candy B. Harrington plastic. Manual wheelchair and rollator with hand Demos Medical Publishing brakes also available. Call or leave message for Lyn 2009 Marie at 203.753.1882. 285 pages FOR SALE Two Amigo scooters, both need new batteries. $400 apiece; One Bruno’s scooter trunk or van lift. SURVIVAL STRATEGIES $500; One set of hand controls. $100. All sales final FOR GOING ABROAD: and will go to highest bidder. Seller has right to A Guide for People with reject bids. Call 860.295.0191. Pick up location in Disabilities Marlborough. by Laura Hershey Mobility International USA FOR SALE 2005 Power wheelchair, Pride Quantum. Full tilt and 225 pages recline. Includes charger. Please call Jennifer for more information at 860.585.6168 or 860.329.9075. 22 ACCESSIBLE ROAD TRIPS: Driving Vacations FOR SALE for Wheelers and Slow Two bed, two bath 1,897 sq.ft. house in Winchester Walkers with indoor heated swimming pool, renovated for by Candy B. Harrington individuals with disabilities. Split-level. Move-in Demos Health ready. Additional 14x35 garage can be used for 2012 animals or vehicle storage. 318 pages Please contact Jacqueline Sembor at 860.913.2550 or [email protected] to place an ad. To request a book, please email [email protected] or call Amy Watkins at 1.800.344.4867

to our friends and supporters

World MS Day unites MS organizations globally and raises awareness of multiple sclerosis and those living with MS to improve public understanding and support that will move us closer to a world free of MS.

Learn how you can make a difference.

worldMSday.org