i am a MoSaic Page 13
SHARING THE RIDE OF A LIFE SUMMER 2014
TIPLE SC LE
N AT I O N
Mike Marques Photography
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Hartford, CT Permit # 01870
Two rides. One destination. A world free of MS. Darren Kramer Evening News Anchor WTNH News 8
Jeff Faul Danbury Diagnosed in 2001
June 1, 2014 WESTPORT
June 8, 2014
National Multiple Sclerosis Society Connecticut Chapter T EL: 860.913.2550 1.800.FIGHT MS (344.4867) FAX: 860.761.2466
John W. “Jack” Betkoski, III Chairperson, Board of Trustees Lisa Gerrol President and Chief Executive Officer 860.913.2550, ext. 52531 ANNUAL CAMPAIGN Kara Preston Associate Vice President 860.913.2550, ext. 52533 DEVELOPMENT Nicole Tobin Marohn Vice President 860.913.2550, ext. 52544 FINANCE & ADMINISTRATION Loretta Sfiridis Vice President 860.913.2550, ext. 52525 PROGRAMS & SERVICES Lynette J. Coleman Associate Vice President 860.913.2550, ext. 52538
MANAGING EDITOR Karen E. Butler 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.
MS Destroys Connection, Connection Destroys MS
e are committed to the fight against MS and relentless in our pursuit of a cure. Whether raising awareness or critically needed funds, it’s true – every connection counts. At no time was it more evident than over the past several months as the chapter launched full force into our event season. At every turn, by engaging others in our cause, we saw the power for change. One very significant connection revolves around our longtime relationship with Travelers, the second largest writer of U.S. commercial property casualty insurance and the third largest writer of U.S. personal insurance. For many years, Travelers has supported Walk MS both as a presenting sponsor and a title sponsor. Each year, the Travelers Walk MS fundraising team hosts a Valentine’s Day rose sale. This year’s rose sale raised a record $7,859. Last year the 50-member team raised more than $62,000 to support people living with multiple sclerosis. Since 2008 the Travelers team has raised more than $310,000. Now, this is a Jack Betkoski, III connection that counts. It was the weekend of April 5 and 6 when we truly saw the command of connections. More than 10,000 participants from across the state rallied to raise more than $1 million to support people in Connecticut battling multiple sclerosis. We witnessed people from every corner creating amazing connections – connections stronger than the ones multiple sclerosis destroys. During MS Awareness Week, I gathered with more than 100 MS activists and legislators at the state capitol to discuss the continuation of state funded programs that assist those in our state living with multiple sclerosis. The following week, four Connecticut Chapter representatives traveled to Washington D.C. to continue our work on a national level and to meet others engaged in the same fight. We invite you to get connected, too. Volunteer, join an event, raise awareness and raise funds. Most of all, invite others to join you in the quest to do something about MS – now. Every connection counts. From fundraising events to influencing policy to giving financially, every one of us can make a difference. On behalf of the National MS Society, Connecticut Chapter Board of Trustees, I want to thank you for making Every Connection Count!
John “Jack” Betkoski, III Chairperson
Riding The Shoulder With MS By Jacqueline Sembor, Communications Specialist
nitially purchased as an attempt to connect while cycling, Eric and Sue Freiburger recently discovered that their trusty bike provides a great deal more. It has taught them how to best navigate life’s unpredictable twists and turns, in tandem. Sue and Eric met while attending graduate school, Sue at the University of North Carolina and Eric at Duke University. Active students with a zest for all things adventurous, the two were quickly inseparable and two years later, married. While the young couple moved from state to state and started a family, they also adopted each other’s hobbies, including Eric’s passion for cycling. “My college apartment had minimal furnishings, but I did have a kayak and three bikes,” said Eric, now 47. “It looked more like a sporting goods store than a home.” Since Eric had five more years of cycling experience than Sue, the duo found it difficult to stay together on rides. It was frustrating and they began to go their own routes. Until, that is, they bought a tandem bike. The years rolled on, and the couple found themselves settling in Pittsburgh with their three children, Eamon, Sean and Sarah. Eric was working, Sue was raising the children and their bike was tucked away in the basement. Life seemed to be picture-perfect, until Sue’s vision began to blur. “Whenever I was in motion, like driving in the car for example, the world wasn’t in focus,” explained Sue. “I didn’t think much of it, until my balance started to be affected too. But I still tried to press on.”
5 Mike Marques Photography Bethel Cycle, Bethel, Conn.
Over the next year, Sue continued to have trouble with her vision, vertigo, fatigue and weakness in her legs. She was seen by a variety of neurologists and specialists and underwent many tests, including several spinal taps. “We had the support of family and friends throughout this challenging time, but it became more difficult when I accepted a new position with Praxair in Buffalo, N.Y., three hours away,” said Eric. “We didn’t want to relocate the family during the school year so Sue stayed with the children in Pittsburgh as I started the new job. The hardest day was on our 16th wedding anniversary, when I got a call from Sue saying she had seen a new doctor and that we finally had an answer.” Sue had been diagnosed with multiple sclerosis, a potentially debilitating disease. Symptoms of MS can include, among other things, 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 cannot be predicted. “When I was diagnosed four years ago, I was rapidly losing function and fearful of what my future would hold,” Sue remembered. Within months, a new position relocated Eric to Praxair’s Danbury office, and the Freiburger family moved to Dutchess County, N.Y., where they now reside. Sue continued battling symptoms, sometimes utilizing a cane, wheelchair or stair lift in their new home. It took a year of medication and multiple steroid treatments for Sue’s MS to become more manageable. However, once it did, she was adamant that it wouldn’t render her immobile ever again. “I started horseback riding and it really helped me regain my strength,” said Sue. “Soon enough I started walking the rail trail near our home and even participated in a thirty-mile MS Challenge Walk.” Then, one day while at work, Eric saw a recruitment table for the 2013 Bike MS. He sent a message to Sue asking if she was interested, and her response naturally was, ‘Yes!’ “There can be a stigma associated with MS in the workplace so we weren’t public with Sue’s MS, but we decided that this was our opportunity to raise some awareness,” said Eric, Corporate Director of Global Process Safety at Praxair. “I approached the team captain, Rich Jarrett, and told him that I would be riding on a tandem, with my wife who has MS. His first words were, ‘Wow, that’s fantastic, I’d love to talk to her.’ From that moment, I knew we had made a good choice.” So the couple pulled their dusty tandem bike out of the basement. In the beginning, it was tough and only commitment motivated them; however, somewhere that changed and their motivation shifted to the simple joy of riding the tandem together. While some people remark that a tandem is a divorce
waiting to happen, Sue and Eric see the tandem as something that brings them closer together. Today, they appreciate every mile on the tandem together; even the hills. “Riding on the tandem is pretty symbolic of my journey with MS,” said Sue. “I can’t see the road ahead, I have no control of the steering or the brakes but if I just keep pedaling, things will be OK.” Finally, in June 2013, Eric and Sue set out for their 50-mile Bike MS journey through the hills of Fairfield County. Despite suffering a spill into a poison ivy patch, they were determined to stick with it. “We had never ridden on a road with traffic before, and I for one was very nervous,” said Sue. “But Rich slowed down and rode right next to us for the first leg of the race, talking to me the entire time. Then, when we arrived at each rest stop, Rich was there waiting for us. We both knew that he could ride at a much faster pace, but he showed great team leadership by quietly giving us that support a nd enc ou ragement.” Ja rret t, a member of the Sound Cyclists Bicycle Club, signed on as team captain a f ter re a l i zing that other Praxair offices across the — Sue Freiburger United States participated in Bike MS rides. With an office of nearly 400 employees in Praxair’s World Corporate Headquarters, he thought the Danbury office should also help in this worthwhile cause. Last year, Jarrett led the Praxair Danbury team of 20 cyclists in raising nearly $23,000 for Bike MS. “We may have been one of the last bikes to cross the finish line, but the entire Praxair team was there cheering us on and greeting us with our medals,” said Sue. “There couldn’t have been a better way to end the ride and we immediately started talking about plans for 2014.” This year, Praxair’s commitment grew even greater as the company signed on for the first time to be title sponsor of Bike MS. “This year, with the combined Praxair title sponsorship and individual contributions and fundraising efforts, I am looking to double our total level of support for Bike MS,” said Jarrett, Director of Global Marketing and Business Development. “I know reaching our goal will require a variety of fundraising efforts and I look forward to adding events and programs in order to reach our goal.” The 2014 Praxair Bike MS Ride, presented by Louis Dreyfus Commodities, will be held Sunday, June 1, in Windsor and Sunday, June 8, in Westport. Finish line festivities include a barbeque lunch, live entertainment, local vendors offering
“Riding on the tandem is pretty symbolic of my journey with MS. I can’t see the road ahead, I have no control of the steering or brakes... …but if I just keep pedaling, things will be OK.”
product samples, free massage therapy and more. Last year, Bike MS attracted more than 800 cyclists and raised more than $578,000. This year, the chapter hopes to raise $595,000. “Riding with Sue has really opened my eyes,” said Eric. “While the fatigue associated with MS can never be understood by an outsider, I know that by the end of our rides, I too am completely exhausted. Sue has issues with balance and often leans slightly to one side even though she feels as if she is sitting upright. As the captain in the front, I have to constantly compensate for this to keep the tandem balanced. I have to always be alert to changes I can’t predict, can’t control and can’t see. I can only react, and I think that’s a lot like what Sue encounters every day.” Funds raised by the National Multiple Sclerosis Society, Connecticut Chapter, ensure ongoing scientific research to find better treatments and a cure, as well as help to provide vital programs and services offered by the chapter to those in the state living with multiple sclerosis. “Events, such as Bike MS, give me goals to work for and have helped me regain control over my life,” said Sue. “I don’t know what tomorrow will bring but, thanks to our team, I do know that Eric and I are not alone in this fight.” For an eighth year, WTNH News 8 anchor Darren Kramer will serve as the grand marshal of Bike MS. Community partners include WTNH News 8, WRCH Lite 100.5 and The Fox 95.9. “Sue has been a vital member of our local team,” said Jarrett, now in his 15th year at Praxair. “Her perseverance and willingness to share her story with others have served as an inspiration to me and our team. Eric and Sue also demonstrate a true partnership in life, so it only seems right that they use a tandem bike.” For more information on the 2014 Praxair Bike MS, presented by Louis Dreyfus Commodities, visit bikeMSct.org. To donate to the Praxair Bike MS fundraising team, visit www.ctfightsMS.org.
Richard Jarrett, Danbury, was on hand to help cut the ribbon at the start of the 50- and 80-mile 2013 Bike MS Ride in Westport. Jarrett, global director of marketing and business development with Praxair, Inc., captained the Praxair Danbury team.
SPONSORING BIKE SHOPS Alternative Spoke, Willington
Bloomfield Bicycle, Bloomfield
Outdoor Sports, Wilton
Cycle Center, Stamford
Berlin Bicycle & Repair, Berlin
Cycling Concepts, Glastonbury
Storrs Center Cycle, Storrs
Bethel Cycle, Bethel
Cycle Dynamics, Westport
Ski & Sport, Ridgefield
Bicycles East, Simsbury
Eastern Mountain Sports, Manchester
Ski & Sport, Westport
Bikers Edge, Bristol
Newington Bicycle, Newington
To get your bike shop involved in Bike MS, contact Michael Branda at 860.913.2550.
An MS Research Revolution
RESEARCH ROUND-UP: MAY 2014 STOP
TB Vaccine May Open A New Treatment Approach For MS Italian researchers published preliminary evidence in Neurology that the Bacille Calmette-Guerin vaccine used to prevent tuberculosis may prevent people who exhibited an initial neurological attack from developing clinically definite multiple sclerosis. Giovanni Ristori, M.D., and colleagues performed a double blind, placebo-controlled clinical trial with 73 participants. Six months after the injection, the 33 participants who received the real vaccine had fewer active brain lesions consistent with MS than the 40 participants who had received the placebo injection. This suggests a decrease in disease activity. Five years after completing the study, those who had been vaccinated were less likely to have experienced relapses and receive a diagnosis of clinically definite MS than those who received the placebo injection. This small study provides intriguing evidence for a potentially beneficial effect of the vaccination in curbing MS.
Hydration May Account For Varying Results In CCSVI Studies Chronic cerebrospinal venous insufficiency, or CCSVI for short, is a reported abnormality in blood drainage from the brain and spinal cord which may contribute to nervous system damage in MS. Since its original reporting, there have been conflicting results on the prevalence of CCSVI in MS, and the National MS Society has been active in finding out why. Sixteen subjects, 11 with MS and five controls, were asked to fast overnight. The following morning, two CCSVI ultrasound examinations were performed, one in the mildly dehydrated state, and another 30 minutes after rehydrating with 1.5 liters of a sports drink. Seven subjects fulfilled CCSVI criteria in the dehydrated state. After rehydration, five (71 percent) no longer fulfilled CCSVI criteria. These results, published in Neurology Clinical Practice, suggest that studies of CCSVI should standardize the state of hydration among participants, and offers one possible explanation for the variety of results reported previously. Additional results from this and other teams in the coming months should shed further light on CCSVI and its implications for people living with MS and for organizations focusing on speeding research toward stopping MS, restoring function and ending MS forever. 8
Skin Tissue May Hold Promise For Treating MS New research co-funded by the National MS Society has reported that stem cells derived from mouse skin tissue were able to reduce nervous system damage in mice, offering further evidence for the possibility that stem cells might be used for cell therapy to treat MS. The study, conducted by a team of researchers at the San Raffaele Scientific Institute in Milan, forced mouse skin cells through a process of ‘cell reprogramming’ to become myelin-making cells. This technique allows specialized cells, such as skin cells, to become embryonic-like stem cells which have the ability to become any kind of cell. This discovery opens new therapeutic possibilities for multiple sclerosis patients because it might target the damage to myelin itself. While more work is needed, this type of research gives hope that this strategy may help restore loss of function.
Walking Speed May Help Track MS Progression A University of Virginia study published in the October 2013 issue of Neurology revealed that the walking speed of people with MS may provide benchmarks of the extent of disease progression and the impact of MS on a person’s daily activities and function. The team of researchers recruited 300 people living with MS who had undergone a “Timed 25-Foot Walk,” or T25-FW, in the previous 15 months, asking each to fill out a survey collecting information on marital status, employment, activities of daily living, use of assistive devices, walking function and depression. Investigators found that T25-FW times slower than six and eight seconds may represent two benchmarks related to impairments in important life activities. This study is aligned with the National MS Society’s fouryear, $3 million Multiple Sclerosis Outcome Assessments Consortium, which, in conjunction with the Critical Path Institute, was announced in December 2012. This project enables the collection of clinical data from many MS clinical trials and should lead to a new way of measuring MS progression. Further research is needed to understand how clinically meaningful these benchmarks are and how useful they might be in tracking MS progression over time.
Thank You To Our Sponsors PRESENTING SPONSOR
Canbex Therapeutics Announces Start of Phase I Trial Canbex Therapeutics Ltd. has announced the beginning of a Phase I study to determine the safety and effectiveness of its oral compound, VSN16R, for the treatment of spasticity in people living with MS. The VSN16R molecule relieves spasticity in mice without causing side effects such as flaccidity, sedation or mood alteration, which can occur with current approved spasticity treatments. With support from the National MS Society through its Fast Forward initiative, in November Canbex Therapeutics completed toxicity studies in rats, one of the final steps needed before bringing the molecule to human testing. This study was one of the National MS Society’s first commercial collaborations through Fast Forward and the first to advance a specific symptom treatment for MS. This trial, and further Phase II and Phase III studies, will help determine whether VSN16R has potential to develop into a safe and effective treatment for MS spasticity and to improve the quality of life for people living with MS.
National MS Society Partners With Accelerated Cure Project’s MS Discovery Forum The National MS Society has awarded the Accelerated Cure Project’s Multiple Sclerosis Discovery Forum a two-year, $150,000 grant to develop resources and content focusing on progressive MS. While the FDA has made substantial progress in approving therapies for relapsing forms of MS, none of these can stop progression or reverse the damage to restore function, which are critical for everyone living with MS, including those with progressive forms. The Multiple Sclerosis Discovery Forum was established in 2012 as a free, neutral venue where members of the MS research community can learn about cutting-edge findings, participate in discussions and access professional resources. The society’s partnership with the Discovery Forum is just one aspect of a multifaceted approach to increasing progress in this underexplored area of research that will enable the society to focus additional coverage and resources on progressive forms of MS. For more information on these research briefs, visit www.nationalMSsociety.org.
Biogen Idec Castleton Commodities International, LLC Ion Bank Foundation Mt. Sinai Rehabilitaion Hospital USA Hauling & Recycling, Inc. SILVER SPONSORS
4AllPromos Advanced Wheels Center for Orthopaedics, PC Lydall, Inc. The Okonite Company BRONZE SPONSORS
Acorda Therapeutics Richard Chevrolet, Inc. Xerox Corporation ADDITIONAL SUPPORTERS
The Cheshire Herald, Connecticut Cruise News, The East Hartford Gazette, The Norwalk Hour, Register Citizen, West Hartford News, Windsor Journal
Prize deadline: Friday, May 23
UConn Health Center Researchers Receive Funding From National MS Society
n fall 2013, the National MS Society launched 38 new MS research projects, with multi-year commitments totaling $19.4 million. This commitment is the latest in the society’s relentless research effort to find solutions for everyone living with multiple sclerosis. Research related to restoring function lost in MS, a key priority in the National MS Society’s comprehensive research campaign, focuses on understanding how nerves and their protective myelin coating work normally and how repair of these critical tissues and cells can be facilitated. Results from these studies and other restorative research projects are expected to suggest new ways to repair damage to the nervous system with the hope of improving function for those living with MS. Among the new recipients in this key area of study are two University of Connecticut Health Center researchers, Rashmi Bansal, M.D., Professor of Neuroscience, and Stephen Crocker, Ph.D., Assistant Professor of Neuroscience. “The material that forms an insulating cover surrounding and protecting nerve fibers, called myelin, is critical to the normal functioning of the central nervous system,” explained Bansal, a professor at the UConn Health Center with several years of experience in MS research. “But in people with MS, myelin is broken down, resulting in a wide array of symptoms. Our research focuses on understanding the molecular mechanisms of how myelin is made during normal development and then re-made after it has been broken down in disease, paving the way for new therapeutic strategies to increase myelin repair in people with MS. This will ultimately improve function and decrease disability.” The National MS Society granted Bansal $330,000 over a three-year period for her research project, “The Role of ERK1/2 in Myelin Assembly, Maintenance and Remyelination.” Along with her two research associates Akihiro Ishii, Ph.D., and Miki Furusho, Ph.D., Bansal aims to forge new ground in understanding the basic processes of how myelin synthesis and repair occur. This study will focus on signaling molecules called ERK1/2, which they have recently been shown to play a key role in the process of myelination. “In previous studies we have found that ERK1/2 have profound effects on myelin thickness,” said Bansal. “In mouse models when we overstimulate ERK1/2 in myelin-forming cells, called oligodendrocytes, we see that myelin thickness is increased. Conversely, when we remove ERK1/2 we find that myelin thickness is reduced. We therefore believe that ERK1/2 can prove to be good therapeutic targets for making healthy normal myelin during remyelination.” Bansal’s team will investigate how ERK1/2 impacts remyelination in mouse models of MS. Importantly, they will examine whether increasing the amount of this molecule can enhance the repair of myelin damaged by MS lesions. “I was interested in studying a subject that was disease oriented,” said Bansal, who has published an estimated 60 papers on her research and has recently received the prestigious Javits Neuroscience Investigator award from the National Institute of Health. By studying how myelin synthesis and repair are controlled, Bansal hopes to discover new knowledge that will assist future drug developers in promoting myelin repair in MS, restoring function to those for whom it was once lost.
Crocker, who joined the UConn Health Center’s research team in November 2007, will also be conducting a restorative study focusing on oligodendrocytes, the cells in the brain responsible for producing myelin. He received a three-year, $530,000 grant for his project entitled, “TIMP-1 Regulation of Oligodendrocyte Differentiation for CNS Remyelination.” The ability of oligodendrocytes to make myelin is enhanced by the protein TIMP-1, which is made by another type of cell in the brain called an astrocyte. One idea about what goes wrong in MS is that astrocytes stop making TIMP-1. Because the astrocytes in people with MS do not produce TIMP-1 they can no longer stimulate myelin to form; thus, when damage is done to the myelin, no repair occurs. “My study focuses on TIMP-1, a protein that enhances the oligodendrocytes ability to make new myelin,” said Crocker, who has also received from the National MS Society the National Multiple Sclerosis Society Career Transition Award and the Dale McFarlin Travel Award for post-doctoral fellows. “The interesting thing is that people with MS do not make this protein. We want to understand how TIMP-1 helps the oligodendrocytes make and become able to produce new myelin. We also want to know if a person with MS did have TIMP-1, would that alone be enough to repair the myelin damaged by multiple sclerosis?” When Crocker first started working on TIMP-1 as a post-doctoral researcher, he received an advanced postdoctoral fellowship from the National MS Society while at the Scripps Research Institute, located in La Jolla, Cal. His project entitled, “Molecular Regulation Of TIMP-1 Gene Expression And Its Role In CNS Inflammation,” focused on understanding
molecular signals that may help to control active players in the inflammation process that occurs in MS-like disease in mice. Since the beginning of that study in 2003, he has continually expanded upon his TIMP-1 research. “If my new study is able to determine that the TIMP-1 protein alone is sufficient to repair damaged myelin, restoration of this protein to the lesions could reverse the damage of MS,” said Crocker, hopefully. “We will also be looking for ways to create something that could also mimic how TIMP-1 can stimulate brain repair.” Research related to restoring function lost in MS, a key priority in the National MS Society’s comprehensive research campaign, focuses on understanding how nerves and their protective myelin coating work normally and how repair of these critical tissues and cells can be facilitated. Results from these studies and other restorative research projects are expected to suggest new ways to repair damage to the nervous system with the hope of improving function for those living with MS. Significant research progress occurred over the course of 2013, offering new leads that are driving efforts to stop MS in its tracks, restore function, and end MS forever. Researchers now have a better idea of what’s causing MS damage and progression, understand more than ever the benefits of early and continuous treatment, and know more about what factors influence the body’s brain repair mechanisms. For more information on local, national and international MS research projects funded by the National MS Society, please visit www.nationalMSsociety.org.
f others are asking you to repeat words, if it’s getting harder to carry on conversations because your speech is slurred, slow, or quiet, or if you can’t talk fast enough to keep up with your thoughts — you may be experiencing a speech disorder. Speech and voice problems occur in approximately 25 to 40 percent of people with MS, particularly during relapses or periods of extreme fatigue. The problems are of two types: dysarthria and dysphonia. Dysarthria is the change in the production of speech, including slurring, unclear articulation of words, and difficulty controlling loudness. Dysphonia is the term used for changes in voice quality, including hoarseness, breathiness, nasality and poor control of pitch. Because speech patterns are controlled by many areas in the brain, lesions caused by MS in different parts of the brain can cause several types of changes in normal speech patterns. Changes may range from mild difficulties to severe problems that make it difficult to speak and be understood. One pattern that is commonly associated with MS is called “scanning speech.” Scanning speech produces speech in which the normal “melody” or speech pattern is disrupted, with abnormally long pauses between words or individual syllables of words. People with MS may also slur words. This is usually the result of weakness and/or incoordination of the muscles of the tongue, lips, cheeks and mouth. Other speech problems include nasal speech, which sounds as though the person has a cold or nasal obstruction. The good news is that most speech and swallowing problems can be managed with the help of a speech/language pathologist (SLP). “Anytime an individual experiences a decline in their speech or voice, it is advisable to consult with a speech pathologist,” said Kim Winter, M.A., CCC-SLP, a speech pathologist with Hospital for Special Care, located in New Britain. “This is particularly true when the individual’s communication skills are compromised by the speech and/or voice changes. If individuals are being referred to me, it is most often due to a change in their speech and voice abilities.” During an evaluation, the SLP will examine the oral muscles that are necessary for speech including the lips, tongue and soft palate to assess how controlled movement is in terms of strength, speed, range, accuracy, timing and coordination. The SLP will 12
check breath support and control, how precisely words are pronounced and how well an individual is understood by others. “Treatment is always individualized to the unique needs of each person, based on the severity of their speech deficits,” Winter said, who has been working as a speech pathologist since 1996. “Speech therapy activities might include: focusing on over-articulating when speaking if speech sounds are imprecise and unclear; attempting to improve breath support by working on better breathing using the diaphragm muscles; and slowing down the rate of speech by making use of natural pauses between phrases and sentences.” Additionally, use of the Lee Silverman Voice Treatment – LOUD Program has been shown to be beneficial for some individuals with MS, as it focuses on improving all of these parameters (i.e. breath support, speech volume, articulation and rate) with an intensive training program. Many persons with dysarthria also have dysphagia, which causes difficulty with swallowing. Speech therapists are trained to evaluate, diagnose and relieve these problems. Changing the types of food and their consistencies can be helpful for some. If a person with MS becomes unable to speak, there are many assistive devices available, ranging from alphabet cards, to hand-held communicators that print out a tape, to computers that respond to eye blinks. Medications that relieve other MS symptoms can sometimes help speech disorders. For example Baclofen, which relieves spasticity, may improve a harsh, strained voice quality. In some cases, injections of small amounts of botulinum toxin into affected muscles can relieve spasms and allow for a smoother voice. There are also exercises to promote relaxation and improve breath support. “No one living with MS or who has a family member living with MS has to try to figure it out on their own,” shared Winter. “If they consult with a speech pathologist, we can evaluate speech needs and determine the most appropriate course of action to help with improving communication difficulties. Treatment of speech and voice deficits associated with MS is not a ‘one size fits all’ paradigm, but we’re here to help.” For more information on speech disorders, visit www.nationalMSsociety.com/symptoms.
i am a MoSaic
Connecticut’s many faces of MS By Karen E. Butler, Contributing Writer
n Sunday, Feb. 9, the chapter hosted an opening reception for i am a MoSaic, an exhibit showcasing Connecticut residents living with multiple sclerosis. The images, taken by lifestyle photographer Mike Marques, illustrate the resiliency of individuals battling a chronic and also potentially debilitating disease. Approximately 130 guests attended the opening reception, held at the Mandell JCC in West Hartford. “I was moved by the number of people coming out for the show,” said Marques, who first started working with the chapter in 2007 when he volunteered to photograph a Bike MS event. “It is a privilege to be able to use my talents and gifts to help raise awareness about multiple sclerosis, a disease I’ve come to understand better because of the people I’ve met through this project.” Over the years, invitations to volunteer in the project were printed in MS Connection and posted on social media. Individuals from across the state came forward to take part in the project, sharing visually their determination to sieze the day – despite a formidable foe, like MS. Each photograph illustrates a person living life as fully as possible, even in the face of disability. Northford residents Robert “Moe” and Linda Mulcahy have been battling MS for as long as they can remember. The couple has always loved taking to the open road. When Linda began to depend on a wheelchair for mobility, Moe had a trailer designed to carry the wheelchair behind their motorcycle, not missing a beat or better, a single destination. “Most days we interact with people who do not understand what it takes to get through the day,” said Moe, who recently purchased a trike to ensure Linda has all the stability she needs to continue pursuing their shared passion for riding. “This photo essay shares with the outside world the innovative ways we address the challenges associated with multiple sclerosis. It explains how we move our lives forward in the shadow of disability.” Initially after his diagnosis in 2001, Leo Katsetos, 37, an athletic trainer at Sacred Heart University, felt his relapsing-remitting MS was getting the upper hand in his life. He decided to take the bull by the horns, so to speak, and adopted a healthy lifestyle, losing excess weight and stepping up his exercise regimen. Leo now competes in many endurance sporting events, including half-ironman triathlons. “Participating in the photo essay made me feel like somebody,” said Katsetos, a resident of Fairfield. “Mike is a true professional. He valued our input and also our battle. I’d like to see the exhibit gain more awareness for MS. I hope it makes appearances throughout the state so people, through Mike’s lens, can experience the day and life of those out there living with MS.” The i am a MoSaic, Connecticut’s Many Faces of MS exhibit, helped launch MS Awareness month in March, going on display at the Connecticut State Capitol concourse. The chapter is securing additional venues and invites members to suggest other opportunities for showcasing i am a MoSaic. “Collaborating with Mike has been a truly rewarding experience,” said Lisa Gerrol, chapter President and CEO. “Mike’s images are moving and compelling. They are raising awareness in a powerful and engaging manner. Because of his efforts, communities across the state are going to better understand the many different ways multiple sclerosis affects lives. Even more, they will be able to see that lives can move forward, even if MS is part of the equation.” 13
Photograph by Karen E. Butler
For more information on i am a MoSaic or to help secure additional venues for hosting the exhibit, please contact Kara Preston, Associate Vice President of Strategic Partnerships, at 860.913.2550, ext. 52533. To view an online exhibit of i am a MoSaic, visit www.iamaMoSaic.com.
â€œI hope this photo essay gives others living with MS the strength and determination to fight for their passions and dreams.â€? Paul Wilson, Bloomfield
Mike Marques on location, photographing Aimee Lambert (above) at an East Haven firehouse.
Rock Cats Dedicate Month Of May To National MS Society
ince 2010, the National MS Society, Connecticut Chapter, has partnered with the New Britain Rock Cats to host MS Community Day. Last year, fans stepped up to the plate and voted the Connecticut Chapter as Charity of Choice, which was awarded a $1,532 donation. This year, the Rock Cats have hit another homer, naming the Connecticut Chapter as the Rock Cat’s Charity of the Month for the entire month of May. As Charity of the Month, the National MS Society, Connecticut Chapter, will receive special benefits from the New Britain Rock Cats, including: features in weekly newsletters and email blasts throughout the month, recognition and promotion through the Rock Cats social media pages, the chapter logo and links to information or upcoming events for the organization on their website and most importantly, volunteer service hours from the staff. The month will conclude with the Connecticut Chapter’s Annual Community Day with the New Britain Rock Cats on Friday, May 30. The event includes tickets to the game and a picnic dinner prior to the game. Last year, 200 guests came out to New Britain Stadium for MS Community Day, an MS program generously funded by the Hayley’s Hope and Michaela’s Miracle MS Memorial Fund. The New Britain Rock Cats are the Double-A minor league baseball affiliate of the Minnesota Twins Major League Baseball club. They compete in the Eastern League and play their home games at New Britain Stadium. New Britain Stadium is located at 230 John Karbonic Way, in New Britain. For more information on the New Britain Rock Cats or to become a Facebook fan of the team, visit www.rockcats.com. For more information on available programs and services offered by the National MS Society, Connecticut Chapter, to those in the state battling MS, visit www.ctfightsMS.org.
TUREK POKER TOUR NAMENT – $11,630 Jason D’Aloia, of Stratford, hosted the 10th Annual MS Turek Charit y Classic on November 2, 2013, at the Holiday Inn in Mount Kisco, N.Y. D’Aloia established the tournament in 2004 in honor of his mother-in-law who was diagnosed with MS in 1998. The tournament to date has raised more than $200,000 for the Connecticut Chapter.
COMPANIONS AND HOMEMAKERS – $6,000 At the Farmington-based Companions and Homemakers’ annual holiday celebration, the organization decided to spread the joy with a fundraising ‘casino night.’ Employees wagered ‘play’ money for the opportunity to donate real funds to the charity of choice, resulting in a $6,000 donation to the National MS Society, Connecticut Chapter.
GET BAKED – $2,643 Windsor bakery Get Baked raised $2,643.62 for the National MS Society, Connecticut Chapter, by saving every tip from the year of 2013. The owner of the bakery, Emily Woodward, has been saving tips for the chapter since the bakery opened in 2012 in support of her mother, Caryn Woodward, who in 1991 was diagnosed with MS.
MOVING IT FOR MA MA MOKES – $400 This year, the 77th Manchester Road Race saw 53 Manchester High School students, alumni and parents raise awar eness for MS while running the Manchester Road Race for the 3rd year. The team sported a custom Moving It for Mam a Mokes t-shirt in support of Dawn Mockler, of Manchester, who was diagnosed with MS in 2011. The team raised $400 for the National MS Society, Connecticut Chapter.
TRAV ELERS ROSE SALE – $7,859 The Travelers Walk MS Team’s Fifth Annual Staff Rose Sale sold more than 785 dozen roses on Friday, Feb. 14. Since partnering with the chapter in 2008, the team, captained by Todd Bateson, President, Specialized Distribution, has raised more than $300,000 to benefit Walk MS.
SANTA CHAR ITY PUB TOUR – $2,391 West Hartford resident Kevin O’Connell organized the Seventh Annual Santa Charit y Pub Tour on Saturday, Dec. 7, 2013. The Santas who participated in the pub crawl raised $2,391. O’Connell, a member of the Hartford Wanderers rugby club, coordinates the event in honor of friends who are living with MS.
VALLEY COLLECTOR CAR CLUB ANNUAL CHA RIT Y BENEFIT – $900 In July 2013, the Valley Collector Car Club hosted its annual Charity Benefit Car Show. Proceeds of the event are donated to various local charities, including a $900 check for the National MS Society, Connecticut Chapter. The 13th Annual Charity Benefit Car Show hosted by the Valley Collector Car Club will take place on Sunday, July 13, 2014. 17
n March, Aetna teamed up with the National MS Society, Connecticut Chapter, to help promote MS Awareness Month. Located in downtown Hartford, Aetna has been providing insurance for more than 160 years. Aetna is one of the nation’s leading providers of healthcare, dental, pharmacy, group life and disability insurance. Committed to giving back, Aetna and its associates have a long history of working locally for the greater good. Throughout March, in recognition of Connecticut residents battling multiple sclerosis, Aetna turned its lights and signage MS orange, capturing the attention of all those traveling through the state’s capital. Aetna also hosted a vivid MS Awareness banner on one of its buildings, situated just north of I-84. “It’s really wonderful when we can partner with charitable corporations, such as Aetna,” said Lisa Gerrol, President and CEO of the National MS Society, Connecticut Chapter. “Aetna associates are creative, giving and engaging. We are delighted to have them join the movement to help create a world free of MS.”
(From Left to Right): Lisa Gerrol, President and CEO, National MS Society, Connecticut Chapter; Christopher Montross, Head of Corporate Community Investments & Employee Programs; and Michelle Toscano, Director, CMO Information Business Management and Planning, CMO Chief Medical Officer and avid Bike MS participant..
Photograph by Karen E. Butler
In March, Aetna associates and volunteers also planted 6,000 MS Flags of Hope, each one representing one of the 6,000 residents living with MS. The campus, which makes up two city blocks, was awash in orange. The chapter hosted a Lunch & Learn program in which Aetna associates were able to ask questions and share their own personal connections to MS. Many staff members signed up to either join or organize a 2014 Walk MS or Bike MS team. “It’s wonderful to hear that Aetna, its employees and its resources are behind the National Multiple Sclerosis Society and the great things the MS Society does to aid those impacted by MS,” said Julie Gladstone, Client Product Management with Aetna. “As an Aetna employee, I’m very close to two people who have MS. This is a challenging disease with no cure. It’s time that we rectify that situation and take action against MS. I hope other people will join us in this effort by biking, walking or contributing to the various events.”
For more information on Aetna and the many ways Aetna reaches out to community, visit www.aetna.com. 19
Plan For More Than Just Fun In The Sun —
MS Society Educational Programming For The Whole Family Multiple sclerosis brings changes and challenges not only to the life of a person living with MS, but also to their family and friends. Check out these great programs offered to our community. Does your child have MS? Are you a young person with MS? Although MS is typically thought of as an adult-onset disease, some children and teens are diagnosed. Kids Get MS Too is a program designed just for young people with MS and their families. It is a chance to talk with other children, teens and families in a similar situation, meet chapter staff, have some fun and learn something new. Learn more about living with pediatric MS as a family, and socialize with other families while enjoying fun activities. As always, siblings and/or a friend are welcome to join in the fun! The Fenway Park Experience Join the National MS Society on Saturday, August 23, for our annual Kids Get MS Too Fenway Park Experience! Last year, more than 20 families from New England had a great time as they socialized, shared experiences, made memories and met new friends within Fenway Park.
The Fenway Park Experience includes lunch, a visit from Wally the Green Monster, Red Sox batting practice and a Fenway Park Tour. Officially announced to the Fenway crowd as, “Pediatric MS Day at Fenway Park,” during the traditional pre-game activities and announcements, this event is a great opportunity to increase awareness about Pediatric MS and the National MS Society. During these announcements, several representatives from the Chapter and the Kids Get MS Too program get a chance to wave to the sellout crowd from the field. The Connecticut Chapter is pleased to partner with the Greater New England and Rhode Island chapters for our Kids Get MS Too programs, including the Fenway Park Experience. A charter bus will be available for Connecticut residents interested in attending the game. For more information on registering for the Fenway Park Experience, please contact Lynette Coleman at 860.913.2550. For more information other Kids Get MS Too programs, please call 1.800.FIGHT.MS. Also, see page 16 for information on the Connecticut Chapter’s annual Community Day with the New Britain Rock Cats.
Hayley's Hope & Michaela's Miracle MS Memorial Fund
These programs are made possible through the Hayley’s Hope & Michaela’s Miracle MS Memorial Fund.
Continuing the Work of the Petit Family Couples Retreat Weekend Couples are invited to join the Connecticut Chapter for a weekend away to focus on nurturing the loving relationships in their lives. Couples Retreat Weekend is designed to help minimize the impact of MS, improve communication and strengthen relationships. Join the Connecticut Chapter for Couples Retreat Weekend Saturday, August 16, and Sunday, August 17, at the Stamford Hilton, located in Stamford, Conn. The two-day retreat is $75 per couple and includes Saturday night accommodations, meals and program content. To register, please contact Amy Watkins at 800.344.4867, ext. 52547, or email programs@ctfightsMS.org.
Caregivers’ Meeting Caregivers and family members are invited to join the Connecticut Chapter at an informal meeting to talk about the impact of MS on their lives and to share struggles and solutions with each other on Saturday, July 26, from 10 a.m. to 1:30 p.m. at Maple Woods at Hamden Senior Living in Hamden. Caregivers’ Meetings are open exclusively to caregivers, including spouses, partners, children, parents or other relatives and friends of someone living with MS. Lunch will be provided for attendees and registration is free. The registration deadline for this program is Monday, July 14.
For more information, on these programs, please contact the Programs Department at 800.344.4867 or email programs@ctfightsMS.org. PAID ADVERTISEMENT
Providing Home Access & Mobility Solutions for Over 33 Years!
Mobility, Seating & Assistive Technology Solutions
Power Wheelchairs w Motorized Scooters w Custom Manual Wheelchairs Wheelchair Seating Accessories w Custom ﬁt by Certiﬁed ATP Staﬀ
Stairlifts, Ramps, Lifts & Home Access Solutions
Straight, Custom Rail, Rentals & Refurbished Stairway Lift Options Wheelchair Lifts & Patient Lifts w Bathroom Access Solutions Modular Wheelchair Ramps w Licensed Techs w Fast Installation ASK ABOUT OUR PEACE OF MIND STAIRLIFT BUYBACK GUARANTEE!
Please call or visit our websites to learn more...
Enhancing Independent Lifestyles
Newington & Pomfret Center, CT s Chicopee, MA s Warwick, RI
Please verify group meetings with leaders prior to attending 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 www.msconnection.org. The BRANFORD MS Support Group meets on the third Wednesday of each month at 5:30 p.m. at the James Blackstone Memorial Library, 758 Main St. in Branford. Call Cheryl at 203.535.3053. The COLCHESTER MS Support Group meets from 10:30 a.m. to noon on the second Saturday of each month at 59 Harrington Court in Colchester. Call Peggie at 860.267.9759. The DANBURY Caregivers MS Support Group meets on the second Wednesday of every month from 7 to 8:30 p.m. at the Main Street Rehab Center, 235 Main St. in Danbury. Call Joe at 203.264.2252. The DANBURY professionally facilitated support group meets on the second Wednesday of each month from 7 to 8:30 p.m. at the Main Street Rehab Center, 235 Main St. in Danbury. Care partners are welcome to attend a separate meeting. Call Eric Szafran at 800.344.4867. The DERBY MS Support Group meets from 4:30 to 5:30 p.m. on the third Wednesday of each month at Griffin Hospital, 130 Division St. in Derby. Call Lisa at 203.231.4716. The GRANBY MS Support Group meets at 1 p.m. on the second and fourth Monday of each month at Salmon Brook Apartments, 287 Salmon Brook St. in Granby. Call Jane at 860.653.2436. The HAMDEN MS Support Group meets at 11 a.m. on the third Saturday of each month at the Playwright, 1232 Whitney Ave. in Hamden. Call Paul at 203.213.5466. The HARTFORD MS Support Group meets from 6 to 7:30 p.m. on the fourth Wednesday of each month at Ready Set Prep, 384-386 Woodland St. in Hartford. Call Lurrann at 860.707.0755. The MANCHESTER MS Support Group meets at 10 a.m. on the first Monday of each month at the Presbyterian Church of Manchester, 394 Lydall St. in Manchester. Call Nancy at 860.742.5155 or Karen at 860.875.9730. The MIDDLETOWN MS Support Group meets at 1 p.m. on the second Saturday of each month at Wadsworth Glen, 30 Boston Rd. in Middletown. Call Mary at 860.828.5240. The MILFORD MS Support Group meets at 1:30 p.m. on the second Saturday of each month at Milford Hospital, 300 Seaside Ave. in Milford. Call Debbie at 203.878.6661 or John at 203.874.1225. The NEWINGTON MS Support Group meets from 12 - 2 p.m. on the second Thursday of each month at the Newington Senior and Disabled Center, 120 Cedar St. in Newington. Call Charlie at 860.667.1314 or Tom at 860.236.2751. The NEW HAVEN MS Support Group meets from 6:30 to 7:30 p.m. on the second Monday of each month at the Wexler-Grant School, 55 Foote St. in New Haven. Call Loren at 203.773.0878.
Be sure to visit www.ctfightsMS.org and click on the “Find Resources and Support” button to find out the most up-to-date information on the vital
The NEW LONDON MS Support Group meets at 6:30 p.m. on the fourth Wednesday of each month at Lawrence & Memorial Hospital, 365 Montauk Ave. in New London. Call Eileen at 860.442.0711, ext. 4990. The NORWALK MS Support Group meets from 1 to 3 p.m. on the first Friday of each month at the South Norwalk Library, 10 Washington St. in Norwalk. Call Erica at 203.840.0104. The PLAINVILLE MS Support Group meets on the third Monday of each month from 7 to 9 p.m. at the Wheeler Clinic, 91 Northwest Drive in Plainville. Call June at 860.747.0564. The PUTNAM MS Support Group meets on the third Tuesday of each month from 7 to 8:30 p.m. at Day Kimball Hospital, 320 Pomfret Street in Putnam. Call Danielle at 860.963.0582. The SHELTON support group meets on the second Monday of each month from 2 to 3:30 p.m. at the Plumb Library, 65 Wooster St. in Shelton. Call Eric Szafran at 800.344.4867. The STORRS MS Support Group meets at 7 p.m. on the second Tuesday of each month at the Mansfield Senior Center, 303 Maple Rd. in Storrs/ Mansfield. Call Joan at 860.429.7271 or Jennifer at 860.450.0530. The TORRINGTON professionally facilitated support group meets from 7 to 8:30 p.m. on the second Wednesday of each month at the VNS of Connecticut, 62 Commercial Blvd. in Torrington. Call Eric Szafran at 800.344.4867. The TRUMBULL MS Support Group meets on the third Tuesday of each month from 6:30 to 8 p.m. at the Trumbull Library, 33 Quality St. in Trumbull. Call Amy Watkins at 800.344.4867. The VERNON MS Support Group meets at 7 p.m. on the first Friday of each month in the Community Room at the Vernon Police Department, 725 Hartford Turnpike in Vernon. Call Nancy at 860.742.5155. The WATERBURY MS Support Group meets at 5:30 p.m. on the third Wednesday of each month at the Joseph Jaynes Building, 77-79 Bishop St., Function Room in Waterbury. Call Karen at 203.754.9656. A second WATERBURY MS Support Group meets at 6 p.m. on the third Monday of each month at the Village at East Farms, 180 Scott Rd. in Waterbury. Call Jackie at 203.753.2708. The WEST HAVEN MS Support Group meets at 11:15 a.m. every Thursday at the West Haven Veterans Administration Hospital, Building 2, on the third floor, located at 950 Campbell Ave. in West Haven. This support group is open to veterans only. Call Mary Lou at 203.932.5711, ext. 2276.
THISability – A support group for LGBT people and
their allies living with multiple sclerosis or other physical disabilities meets on the second Tuesday of each month from 1 to 3 p.m. at Triangle Community Center, located at 618 West Ave in Norwalk. Contact Ed Lent at (203) 807-0194 or firstname.lastname@example.org
On The Move On The Move is a social group for people with MS in their 20s and 30s living with MS. Groups meet every month in Norwalk, Windsor and West Haven. If you are interested in attending please contact Amy Watkins at email@example.com
Caregivers’ Meeting Caregivers and family members are invited to come together to talk about the impact of MS on their lives. For information on the next meeting, call Amy Watkins at 800.344.4867.
programs and services offered by the Connecticut Chapter.
Infoline 24-hour counseling dial 211
UPCOMING PROGRAMS Wednesday, May 7 Yale MS Center Cognitive Issues In MS, Yale MS Educational Series 5:30 – 7 p.m. Tuesday, May 13 Mandell MS Center Living With MS Educational Series 6 – 7:30 p.m. Friday, May 30 New Britain Stadium MS Community Day Saturday, July 26 Maple Woods Senior Living Caregivers’ Meeting 10 a.m. – 1:30 p.m. Sat. Aug. 16 & Sun. Aug 17 Stamford Hilton Couples Retreat Weekend NATIONALLY OFFERED PROGRAM Keep S’Myelin – Keep S’myelin is a colorful, engaging, informative and reassuring newsletter to help children and their parents talk and learn about MS together. Each issue is filled with stories, interviews, games and activities that highlight a specific topic related to MS, as well as a special section just for parents. To receive your free subscription to Keep S’myelin, contact an MS Navigator at contactusNMSS@nmss.org or call 1-800-344-4867. MS Friends: Peer Telephone Support Call the MS Friends helpline at 1-866-673-7436 between 8 a.m. and 11 p.m. every day. All conversations are confidential to the peer relationship.
Understanding and ending MS can’t come fast enough - it will take all of us working
Finding solutions for people with MS is our highest priority • •
Research is essential to finding solutions that change lives We will fuel research through increased investments – a record-breaking $50 million in 2014
Our goal: STOPPING THE DISEASE
RESTORING WHAT’S BEEN LOST
ENDING MS FOREVER
Our approach is comprehensive and focused, and we collaborate worldwide We pursue all promising paths to uncover solutions for EVERYONE with MS, while focusing on three priority areas: • Progressive MS • Nervous System Repair, including Myelin Repair • Wellness and Lifestyle And while we drive our priority areas, we remain nimble to seize promising new opportunities
Call For Computer Volunteers The National MS Society’s Computer Outreach Program is in need of volunteers. The program provides computers to people with multiple sclerosis who are restricted to their homes or live in a long-term care facility.The Connecticut Chapter is looking for volunteers who are willing to take on the role of refurbishing donated computers and loading software and assistive/ adaptive technology. Volunteers would then help train people on the new technology and media. Volunteers should have knowledge of Windows 7, troubleshooting, social media including Facebook, Twitter and YouTube, and adaptive/assistive software such as Dragon Speech, Zoom Text and Skype. Volunteers should also be willing to follow-up with computer recipients on a regular basis. For more information about this program, please contact Eric Szafran at 800.344.4867 or by email at firstname.lastname@example.org.
YOU TALKED, WE LISTENED The National MS Society has a new website – new look, new content, new navigation. Many of you – people living with MS, friends and family members, event participants, volunteers, donors and professionals – contributed ideas and input toward the new site. You shared what information matters most to you, tested the site as it was developed and made suggestions – you even helped get rid of a few “bugs.” Now, the next generation of www. nationalMSsociety.org is designed to help you: n Find relevant information, programs, services, and resources; n Connect with others, share information and get support; n Participate in events, advocate for change, raise awareness, champion research, and discover more ways to engage. Take some time today to tour the new site at www.nationalMSsociety.org, and let us know what you think!
3 DAYS. 50 MILES. CONNECT TO END MULTIPLE SCLEROSIS September 5–7, 2014 The MS Challenge Walk, hosted each September in Cape Cod, Mass., is not for the faint of heart. The rigorous walk features two options – a 50mile walk over three days or a 50-kilometer walk over two days. Unlike the National MS Society’s one-day walk event, Challenge Walk MS not only asks that participants be physically dedicated but also requires participants be committed to raising funds. In fact, each walker must raise a minimum of $1,500. But if the requirements for participating seem challenging, according to participants the emotional rewards far exceed the demands.
The MS Challenge Walk tests your strength and your spirit, and makes an extraordinary difference in the lives of people living with the unpredictability of multiple sclerosis. The event includes a beautiful walk on Cape Cod and the Rail Trail, accommodations and fun at Cape Cod Sea Camps, impactful evening programs and a spectacular finish line celebration. The MS Challenge Walk is a fully supported event. You train and fundraise, and we’ll take care of you during the event.
For more information, please contact Michael Branda at 860.913.2550, ext. 52541, or e-mail at email@example.com.
GREATER NEW HAVEN MS TASTE OF HOPE We Thank Our Generous Sponsors Assiaggo Bean & Leaf Coffee Roasters Big Green Pizza Truck Caseus Fromagerie & Bistro Elm City Market Geronimo Tequila Bar & Southwest Grill Home Latitude Beverage Co. Onyx Spirits Company Opici Family Distributing Park Central Tavern Shebeen Brewing Take The Cake The Wine Press Thimble Island Brewery Willimantic Brewing Company
WOMEN AGAINST MS LUNCHEON MONDAY, MAY 12, 2014 HYATT REGENCY 1800 E. PUTNAM AVE. OLD GREENWICH, CONN.
For more information on the 2014 Fairfield County Women Against MS Luncheon or to purchase tickets, please visit www.ctfightsMS.org.
10th Annual Golf MS Classic presented by GE Capital Real Estate
Connecticut Executive Choice Awards Monday, May 12, 2014 TPC River Highlands Cromwell, CT Join us for a great day on the links and play like a pro! For registration and sponsorship information, please visit ctfightsMS.org.
What is Nellie thinking? “Hey… I walked, too. Where’s my Subway sandwich?”
A networking event honoring exceptional professionals in Connecticut. September 16, 2014 Aqua Turf Club Plantsville, Conn. For more information, visit ctfightsMS.org.
CONTEST WINNER Congratulations to Kathy Goggins, of Middletown, for winning the MS Connection Thought Bubble Contest.
Other great submissions included:
“Wow!!! Check out that hot beagle!” – Nancy Rahmig “That sandwich looks so good. I hope she drops it!” – Paul Czerepacha “We’re splitting it, right mom?” – Ann Kaczmarezyk “I’m going to stare at you until you feel so guilty – please feed me Liz! I love you!” – Jackie Klies Thank you to everyone who sent in submissions! 25
In The Raymond P. Howell Library
CALENDAR OF EVENTS MONDAY, MAY 12
Golf MS Classic TPC River Highlands, Cromwell
MONDAY, MAY 12
Women Against MS Luncheon, Fairfield County Hyatt Regency, Old Greenwich
SELF-CARE FOR CAREGIVERS: A TWELVE STEP APPROACH
SUNDAY, JUNE 1 Bike MS Griffin Center, Windsor
Written by Pat Samples, Diane Larsen and Marvin Larsen Published by Hazelden, 1991 141 pages
SUNDAY, JUNE 8 Bike MS Sherwood Island State Park, Westport
YOU CAN DO IT YOGA FOR MS, VOL. 1
SATURDAY, JUNE 21 MuckFest MS New Jersey
Includes a seated yoga class (47 min) and a beginner yoga class (58 min) Prepared by Larissa Nusser and Denise Danton-Nizzare
FRIDAY, SEPT. 5 – SUNDAY, SEPT. 7
Challenge Walk MS Cape Cod, Mass.
SATURDAY, SEPT. 13 Bike MS: Cardio Express Ride Riverside Park, Hartford
YOU CAN DO IT YOGA FOR MS, VOL. 2 Includes a beginner/intermediate class (54 min) and an intermediate class (58 min) Prepared by Larissa Nusser and Denise Danton-Nizzare
TUESDAY, SEPT. 16
Connecticut Executive Choice Awards Aqua Turf Club, Plantsville *For chapter programs, please refer to page 23.
For more information on these and other events, visits ctfightsMS.org.
TRANSFORMATION: GUIDED MEDITATIONS By Larissa Nusser. Includes a wake-up meditation (11 min) and a restful sleep meditation (14 min)
CLASSIFIEDS PAID ADVERTISEMENT
FREEDOM LIFTS The largest selection of stair lifts in New England For more information and to schedule a free evaluation call
Be a Hero
• Free in-home evaluation
• Made in USA
• Lifetime power train • All service is performed warranty by our licensed • Stair lifts, new and technicians, so it used are available for is done right rent with an option • Senior Citizen discount to buy
See what your future gift can do. Name the National MS Society in your will. beaMShero.org
FOR SALE Brand new, never used Hoveround Chair. Must Sell! Grey with brand-new batteries and charger. Extremely comfortable with extra thick padding. Special wide and extra strength, foldable three-panel Hoveround wheelchair ramp. Still in the plastic. Manual wheelchair and rollator with hand brakes also available. Call or leave message for Lyn Marie at 203.753.1882. FOR SALE Lightly used Jet2 powerchair. Grey leather. New battery needed. Call Phyllis at 860.841.2525. FOR SALE Very lightly used Pride luxury lift chair. Blue. Brand new quad-based cane. Call Deborah at 860.563.0011. HOUSE FOR SALE – Wheelchair-adapted by the Veterans Administration, five bedroom, two full baths, one half bath, eight room colonial on five and one half acres of land located near the University Connecticut and Eastern Connecticut State University. Call 860.949.9028.
Dwayne Paige diagnosed with MS in 1990
EVERY CONNECTION COUNTS
Physician at a local hospital diagnoses patient with multiple sclerosis
National MS Society Professional Resource Center The National MS Society creates a comprehensive program supporting clinicians caring for patients diagnosed with MS
MS PROFESSIONAL CONNECTION > The MS Clinical Care Network is home to one of the most comprehensive MS libraries in the world, offering MS-related publications, expert opinion papers, clinical consultations and literature search services. The society produces a quarterly newsletter geared specifically for healthcare professionals and MS researchers. The society offers online and on-site courses and seminars for healthcare professionals. These courses provide continuing education units. Stay connected. For more information, visit www.nmss.org/for-professionals or call 1.800.344.4867.
MS KILLS CONNECTION >
< CONNECTION KILLS MS