SPRING 2014 Delaware, Southeastern Pennsylvania & South Jersey
MSConnection Newsletter I Ride With M : Melissa Gemelli
There are many factors that could have motivated Melissa Gemelli to sign up for the I Ride With MS Program as part of Bike MS: City to Shore Ride 2014. The Allentown resident had previously participated in Walk MS, Challenge Walk MS and the Lehigh Valley Leadership program and was looking for a new challenge. But last year, Melissa and the rest of her family went to Ocean City to cheer on her 68-year-old father as he crossed the Bike MS finish line. That was when her son Brendan, who will turn 12 this year, announced that he wanted to take part in the event to raise money to help his mother and others living with MS.
CONtinued on Page 11
INSIDE 08 THIS ISSUE
Learn to be Fall Free
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16
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Highlights from Walk MS
Support Groups
Summer Family Programs
Face of MS: John Platt
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MS connection: SPRING 2014
GREATER DELAWARE VALLEY CHAPTER
DELAWARE CHAPTER
National Multiple Sclerosis Society 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611
National Multiple Sclerosis Society 2 Mill Road, Suite 106 Wilmington, DE 19806 302-655-5610
Chair: Marianne Jackson Vice Chairs: Valli Baldassano, Roger Dennis President: Tami Caesar
Chair: Maria McCabe Vice Chair: Matt Lenzini President: Kate Cowperthwait
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Š2014 National Multiple Sclerosis Society, Greater Delaware Valley Chapter Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear
here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned. MSConnection welcomes letters to the editor. Send letters to kevin.moffitt@nmss.org or one of the addresses above. Include your name and a phone number or email address where we can reach you, if necessary.
NOTE: We may edit your letter for length and
content.
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Letter from the presidents
We All Have a Place in the MS Movement
Kate Cowperthwait, president Delaware Chapter
Spring means something different to each of us. At the National MS Society, this time of year marks the beginning of our annual fundraising event season – as we are sure you are fully aware due to the series of mail and email alerts about Walk MS events coming up your area.
From now until November, when we cap off the year with Tami caesar, president the Thanksgiving Greater Delaware Day Run/Walk for Valley Chapter MS in Wilmington, our collective energy will be focused on generating as much funding, support and awareness as we can for research and local direct services. It is not something that the Society staff magically makes happen; it takes thousands of hours of planning to host large scale events such as Walk MS, MuckFest MS and Bike MS. And it’s not something we do alone. The unparalleled support of our
volunteer community is what truly makes our fundraising events fun and, ultimately, successful. These events generate the funds that have led to the 10 FDA-approved diseasemodifying therapies currently available and allowed the Society to build the programs and services that many of you have come to rely on. So although you may not be interested in participating in Bike MS or may not be able to take on the muddy challenge of MuckFest MS, you still have a role to play in making these events and the MS movement a success. Every person affected by MS can contribute, regardless of age or ability. Over 15% of you did just that this past year: some chose to lead the way as fundraisers, by volunteering at a rest stop, or by simply making a sign to express your thanks along the Bike MS route. How you contribute to the mission is up to you: the fact is that just as MS is different for every person, there is a different way for people to move us closer to a day when MS is no more. We are getting closer to that day. And when it comes, we will celebrate together. Sincerely, Kate Cowperthwait, President Delaware Chapter
Tami Caesar, President Greater Delaware Valley Chapter
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News BRIEFS GENZYMe TO RESUBMIT LEMTRADA TO FDA Genzyme announced it will be resubmitting its application to the U.S. Food and Drug Administration for approval of Lemtrada™ (alemtuzumab) as a treatment for relapsing MS in the United States. The company’s previous application was denied approval in 2013. The company announced it intends to submit during the second quarter of 2014. “We are encouraged by this development and will be monitoring the process closely as it moves forward,” commented Timothy Coetzee, PhD, Chief Advocacy, Services and Research Officer at the National MS Society.
MS connection: SPRING 2014
INVESTIGATORS RECRUITING FOR MS AND SPASTICITY Investigators nationwide are recruiting 214 people for a study to determine the effectiveness of extendedrelease baclofen capsules in relieving spasticity and symptoms related to MS. The study is sponsored by Sun Pharma Advanced Research Company Limited. Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common and troublesome symptoms of MS. Baclofen acts on the central nervous system to relieve spasms, cramping, and tightness of muscles caused by spasticity. This study is evaluating an extended-release form of baclofen. Extended release – in which a drug is released over time – may allow for it to be taken less often. Participants should be at least 18 years old, have
any form of MS and a known history of spasticity. Participants should be taking immediate-release baclofen (30 to 60 mg) at the same dose and the same schedule for the last 30 days. Further details on enrollment criteria are available from the contact below. To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact: Lindsay Liszewski At Thomas Jefferson University at 215-955-9575/lindsay. liszewski@jefferson.edu.
SOCIETY PARTNERS WITH NIH TO STUDY POTENTIAL DRUG FOR PROGRESSIVE MS Robert J. Fox, MD, of the Cleveland Clinic has been announced as the Protocol Principal Investigator for the study “A Randomized, Double-Blind, PlaceboControlled Study to Evaluate the Safety, Tolerability and Activity of Ibudilast (MN-166) in Subjects with Progressive
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Multiple Sclerosis,” which is also called SPRINT-MS. This research study is being conducted to determine the safety, tolerability and activity of ibudilast (MN166) administered twice daily over a 96 week period in subjects with primary and secondary progressive multiple sclerosis. The study will be conducted by the NeuroNEXT Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT) in NeuroNEXT sites around the United States. The trial will utilize advanced brain imaging to assess disease progression and correlate clinical activity with these imaging measures. This study is also being supported by MediciNova, the pharmaceutical company that is developing ibudilast, and the National Multiple Sclerosis Society as part of a private-public partnership with the National Institutes of Health. For more information, visit Neuronext.org.
BIRTH CONTROL PILLS AND OBESITY MAY INCREASE THE RISK OF MS A new study has found that birth control pills and obesity may increase the risk of MS. Researchers found that participants who were obese at the age of 20 were twice as likely to develop MS later in life, compared to individuals the same age who weren’t obese, Medical News Today reported. In a separate study, researchers analyzed 305 women who had been diagnosed with MS or clinically isolated syndrome, which is a precursor to the disease. These women were members of Kaiser Permanente Southern California for at least three years prior to the development of MS symptoms. Researchers assessed the women for their use of birth control pills and compared them with 3,050 women who were free of the disease.
Twenty-nine percent of women with MS had used hormonal contraceptives for at least three months in the three years before MS symptoms began, while 24 percent of women without the disease had used birth control pills. Researchers found that women who had used birth control pills were 35 percent more likely to develop MS, compared with women who didn’t use them. Also, women who were 50 percent more likely to develop MS had stopped using hormonal contraceptives one month before MS symptoms began researchers found. “These findings suggest that using hormonal contraceptives may be contributing at least in part to the rise in the rate of MS among women,” lead study author Dr. Kirstin Hellwig said to Medical News Today. n
MORE RESEARCH Visit us online at nationalMSsociety.org to stay on top of the latest in MS research.
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MS connection: SPRING 2014
research
New research on wellness and lifestyle
One of the National MS Society’s priorities is to drive research on wellness and lifestyle, where advancements could make a difference in the quality of life for people living with multiple sclerosis. These studies are also offering clues to risk factors that could help determine who is more likely to develop MS, which could lead to preventive strategies to end MS forever.
Exercise and Memory Aerobic exercise has been shown to increase the volume of an area of the brain associated with memory, called the hippocampus. Victoria Leavitt, PhD, of the Kessler Foundation Research Center in West Orange, N.J., and her colleagues conducted a small pilot study to determine the effects of aerobic exercise on two people with MS who experienced memory impairment. One person was randomly assigned to an aerobic exercise program involving stationery cycling, and the other was assigned to a non-aerobic exercise program of stretching. Each program consisted of three 30-minute sessions per week for 12 weeks. Before and after the program, MRI images were taken to assess the size of
Aerobic exercise may help memory. the hippocampus; functional MRI images were taken to assess real-time brain activity; and memory assessments were also conducted. The researchers found that aerobic exercise resulted in a 16.5% increase in hippocampal volume, a 53.7% increase in memory and a significant increase in hippocampal activity. No significant changes occurred in the person doing nonaerobic exercise. (Neurocase, published online October 4, 2013) These preliminary results need further confirmation, but are in line with an emerging body of evidence showcasing the potential of exercise to provide broad benefits for people with MS. The Society is funding several studies exploring the potential benefits of exercise, including a trial of aerobic exercise as a strategy to treat cognitive dysfunction.
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Fatty Fish and MS Fatty fish, such as herring, mackerel, tuna, salmon and trout, are a major source of vitamin D, which has been associated with decreased MS risk. Maria B채채rnhielm, PhD, and colleagues from the Karolinska Institutet in Stockholm studied whether fatty fish intake was associated with whether or not a person develops MS. They looked at a sample of 1,879 people with MS and 4,135 people without the disease; both groups had answered questionnaires as part of the Epidemiological Investigation of MS, a study comprising Swedish-speaking subjects between ages 16 and 70 from certain areas of Sweden. The team analyzed survey answers concerning fatty and/or lean fish intake, sun exposure and other factors, as well as blood samples to analyze vitamin D levels. They found that frequent fatty fish intake was associated with decreased occurrence of MS and that no significant association was found between intake of lean fish and MS. Among 1,178 people with MS and 1,410 without MS for whom blood samples were available, vitamin D levels were higher in those with high fatty fish intake. This work was supported by the Swedish Medical Research Council and other agencies. (Multiple Sclerosis Journal, published online October 24, 2013) This study adds to the growing body of research suggesting the possible benefits of vitamin D for people with MS and the role of vitamin D in lowering risk of developing MS. A Society-funded clinical trial of
vitamin D supplementation is ongoing in people with relapsing-remitting MS. Read more about vitamin D research at www. nationalMSsociety.org/vitaminD.
Looking at Lifestyle The Ausimmune Study, partly funded by the Society with the National Health and Medical Research Council of Australia and others, was launched to investigate whether increased exposure to sunlight and vitamin D may be protective against MS in people who had not yet been diagnosed with MS, but who had experienced a first neurologic episode that often leads to MS (called CIS, or clinically isolated syndrome). Anne-Louise Ponsonby, PhD (Murdoch Childrens Research Institute, Melbourne) and her colleagues used information from this unique study to research whether various lifestyle factors were associated with the development of CIS, including current and past tobacco, marijuana and alcohol use, physical activity patterns, blood pressure and body measurements. They found that risk of developing a CIS increased by 79% in people who had ever smoked, lending further evidence to the harmful effects of smoking in people with MS. None of the other factors in the study were associated with increases in risk. (Multiple Sclerosis Journal 2013;19:1717). n
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Living with ms
Learn to be fall free By Kelly Jo Tullberg and Jennifer Philp
Are you feeling more unstable on your feet, using a wall or furniture to help with balance? Does the thought of going down a flight of stairs make you especially nervous? Do you cancel plans because you are afraid you might fall in public?
Besides the physical impact, falling can lead to a loss of independence, loss of confidence and social isolation. Society blogger Julie Stachowiak, PhD, an epidemiologist who also lives with multiple sclerosis, understands how you feel. “Falls separate us from ‘healthy people’ in a very literal way,” she writes at www.MSConnection.org/blog. “We are completely alone in that moment when we hit the floor.” However, research shows that many individuals living with MS experience falls.
Balance against falls A 2011 survey among adults diagnosed with MS reported that 60% of individuals have fallen, with many of them experiencing multiple falls in the past six months. Besides the physical impact, falling can lead to a loss of independence, loss of confidence and social isolation brought on by both physical limitations and fear of future falling. There are several reasons people with MS may fall. Incoordination and weakness may contribute to fall risk, as can dizziness or vertigo–all common MS symptoms. Drop foot, another MS symptom, can
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cause someone to stumble on flat surfaces or trip when stepping up a curb or stair. And the neurological damage caused by MS can affect how the brain perceives the movement and position of the body, which affects in turn how quickly someone reacts to an obstacle. Furthermore, other factors, such as clutter, poor lighting, uneven surfaces, and medications with side-effects such as drowsiness, also increase the risk of falling.
Clutter, poor lighting, uneven surfaces, and medications with side effects such as drowsiness also increase the risk of falling. To help people living with MS address falling issues, the National MS Society developed Free From Falls, a comprehensive fall prevention program. In the 8-week program, participants: ■■ Learn
what can contribute to falls;
■■ Identify
strategies to use to prevent falls;
■■ Develop a fitness plan to improve balance,
endurance, strength and mobility; and
■■ Increase
their confidence about how to avoid and manage falls, if they occur.
Call 1-800-344-3867 to find fall prevention programs near you. Call an MS Navigator at 1-800344-4867 to request the DVD and accompanying brochure, and to find a fall prevention program near you. Visit www. nationalMSsociety.org/freefromfalls to learn more about fall prevention. And remember that you are not alone . n Kelly Jo Tullberg and Jennifer Philp are Society staff members. Originally published in MSConnection, South Central edition.
10 Living with ms
CONNECT AT:
www.nATIONALMSSOCIETY.org The National Multiple Sclerosis Society’s website at www.nationalMSsociety.org connects people like yourself who are living with MS with the information, people and resources that can help you and your loved ones live your best lives. To that end, many exciting changes to the site have taken place to improve your ability to connect to:
INFORMATION Updated navigation, new content and improved searching help you find what you’re looking for faster.
EACH OTHER Our growing online community is even easier to access, making it easier for you to share your experience with others living with MS, healthcare providers and MS researchers.
THE MS MOVEMENT Several new features make joining the MS movement even more possible. These features include: a “My Profile” section where you can access your profile information, set preferences
MS connection: SPRING 2014
and track your involvement; a mobile-friendly design that lets you view the site from your smartphone, tablet or other mobile device; and easier-to-read content and accessibility for anyone using assistive devices like screen readers.
You Talked, We Listened 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: ■■ Find
relevant information, programs, services, and resources;
■■ Connect
with others, share information and get support;
■■ 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. If you happen to find a bug that snuck through the cracks, let us know that too. n
nationalmssociety.org | 1-800-FIGHT-MS
Cover Story Continued “I said, well, if you are riding then it looks like I am going to be doing it as well,” Gemelli recalls with a laugh, noting that the excitement at the Bike MS finish played a big part in their decision to ride after serving as volunteers in 2013. “The atmosphere was just wonderful -it’s such a great experience to be there when all the riders are coming in and we wanted to be part of it.” Consequently, Melissa, her husband and her two children will be taking on the 25-mile route while other family members – including a sister who also lives with MS – will be riding the traditional 75-mile route.
The atmosphere was just wonderful — it’s such a great experience to be there when all the riders are coming in and we wanted to be part of it. Most people who ride in Bike MS events do so to support family members, friends or coworkers who have been diagnosed with multiple sclerosis. But, there are also legions of participants who live—and ride—with the disease, despite challenges such as fatigue or weakness. I Ride with MS is a special Society program that celebrates Bike MS cyclists who are also living with multiple sclerosis. Anyone living with MS who is interested in cycling to support the MS movement can join the program, enjoy special day-of-event benefits and receive a complimentary “I Ride
11 with MS” jersey. Genzyme and MS One to One, and Primal Wear are proud supporters of the I Ride with MS program, available through all 100 Bike MS events nationwide.
For most cyclists, fueling the search for better treatments is more than enough of a reason to support the event. But for Gemelli, her personal experience after having a major exacerbation and being diagnosed just six months before her wedding means it is about more than the quest for the cure. “I was able to find a local support group and there were also programs that were offered at no cost – it was really amazing,” Gemelli explains, noting that one person in her newly-diagnosed group remained friends for years after. “One of the reasons I continue to support the Society is because there are so many programs offered besides the research.” As for the ride itself, Gemelli said the family training sessions will start soon now that the winter weather has finally receded. While her father has warned her about the bridges leading into Ocean City, Gemelli is not overly concerned. “If it comes to it, we’ll just walk over the bridges. There’s no shame in that.” To register for I Ride With MS, visit BikeMS.org. n
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Thank you to everyone at our 19 local Walk MS sites — you helped make 2014 our best year ever!
nationalmssociety.org | 1-800-FIGHT-MS
Society’s 2013 U.S. Senator of the Year: Senator Robert Menendez of NJ As the Chairman of the Senate Foreign Relations Committee, Senator Menendez has shown his commitment to ratifying the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which affirms the rights of Americans with disabilities — including those with MS — living, working, studying, serving, or traveling abroad. Reaching across party lines and bringing together diverse stakeholders, Senator Menendez has worked determinedly to make ratifying the CRPD a well-supported, bipartisan effort. “More than 20 years ago, the US enacted the historic Americans with Disabilities Act, which has promoted independence and community for people with disabilities,” says Cyndi Zagieboylo, National MS Society President and CEO. “We applaud Senator Menendez for continuing in that spirit and urging Congress to take the next step to affirm the rights of people with disabilities internationally.”
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Society CEO Cyndi Zagieboylo with Senator Menendez after he received his award.
I strongly believe that Americans living with disabilities should be granted the same rights they have here in the United States all over the world... Senator Menendez also supports funding for the National Institutes of Health (NIH), the Congressionally Directed Medical Research Program (CDMRP), and is a dedicated member of the Congressional Multiple Sclerosis Caucus, which seeks policy solutions that will improve the lives of people affected by MS and their families. “I am proud to be the National MS Society Senator of the Year,” says Senator Menendez. “I strongly believe that Americans living with disabilities should be granted the same rights they have here in the United States all over the world, which is why I support the CRPD wholeheartedly.” n
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Transportation, rehab and utility assistance available for PA and South Jersey residents Utility assistance Since 1983, Utility Emergency Services Fund(UESF) has provided over $65 million of utility assistance to over 150,000 Philadelphia families, assisting these families to achieve new starts. Every dollar we provide through our Utility Grant Program is matched by PECO, The Philadelphia Gas Works (PGW), or the Philadelphia Water Department (PWD). By focusing on the need for utility assistance as part of a larger housing stabilization issue, UESF has recently expanded its scope to assist vulnerable families with rent, mortgage and security deposits as well as provide ongoing self-sufficiency training to help families preserve their housing. To be eligible, the account must be in your name and you must be a Philadelphia resident, a shut-off notice must have been received and Low-Income Home Energy Assistance Program (LIHEAP) must be exhausted.
Transportation The Greater Delaware Valley Chapter is proud to offer transportation to essential neurology and allied health professional appointments within the chapter area.
Rehabilitation The chapter also offers co-pay assistance or (if uninsured) full-pay assistance for various forms of rehabilitation including physical and occupational therapy.
For more information, call our office at 215-271-1500 or email mollie.burns@nmss.org.
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Drexel University is conducting a research study examining multitasking ability in MS and how it is related to employment status and is in search of people to participate. The study is titled, “Multitasking and Vocational Functioning in Multiple Sclerosis: A Performance Based Assessment”. IF YOU ARE: • Between the ages of 21 and 60 • Diagnosed with MS for at least 1 year • Are currently employed and would like to participate in a study... YOU SHOULD KNOW: • Participation in this study will not affect your employment status • All results are confidential • You may be compensated up to $45 for your time and participation WHAT WILL I HAVE TO DO? • Come in for one 3-hour visit, where you will complete some brief paper and pencil tasks, discuss your experiences at work, and complete questionnaires containing sensitive health questions. To participate, contact: Maria T. Schultheis, Ph.D. by calling 215-895-6105 or by emailing schultheis@drexel.edu.
VOlunteer at bike ms: CITY to Shore CONTACT US AT 215-271-1500 or joy.mcmanus@nmss.org
16 Support Groups: Finding strength through connections One of the main missions of the MS movement is to strengthen the connections between those who know and those who need to know. In other words, we want to provide those living with MS with all the information and resources needed to make their MS as manageable as possible. These connections are valuable in the fight against MS, so it is vital that we ensure access to these resources and information to whomever, wherever, and whenever one needs it. Our traditional peer-to-peer self-help groups serve much of our community. However, it was clear that more could be done. “We quickly realized there was a large percentage of our membership that wasn’t taking advantage of these opportunities,” says Pat Thieringer, outreach manager at the Greater Delaware Valley Chapter. “The fact is that some people are not attracted to the traditional support-group format and there are many people who can’t physically get to a meeting, so we decided
MS connection: SPRING 2014
that we needed to develop a format that would provide more options for self-help support.” Each group is tailored to provide those living with MS with support more specific to their current situation regardless of their location or mobility status. Support groups are available in many forms, including online groups, peer-ledin-person groups, telephone groups, social groups, and one-to-one individualized interactions. With creating and maintaining valuable connections for all as the main goal, current groups include: Couples Group: This group was founded in 2012 by a young architect with MS. Their monthly meetings at various Center City restaurants attract young couples from throughout the area. This group also created one of the largest fundraising teams at Walk MS Philadelphia last year.
■■ Young
■■ Newly
Diagnosed Peer Telephone Group: Developed and presented by a man living with MS, Dr. J. Lamar Freed. This monthly professionallyled teleconference provides basic information about MS in the comfort of the member’s own home. This format allows the anonymity that people may prefer during the early period of their diagnosis and selects monthly topics that are the most common concerns of the newly diagnosed.
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Mentoring Pilot: The Society recently trained 10 peer mentors from the Philadelphia area for a face-to-face peer mentoring program. After receiving extensive training, these mentors will be matched with a newly-diagnosed individual in their area with a commitment to meet with them monthly to provide individual support and peer education.
■■ Peer
■■ Professionally-Led
Newly Diagnosed Group: A weekly support group for the newly diagnosed in our Philadelphia office. with MS Social Group: This group which caters to 21-35 year olds, meets quarterly for social events such as bowling, dinner or happy hour events.
■■ Young
with MS Group: The group is facilitated by J. Lamar Freed, a psychologist living with MS. Dr. Freed leads the group in an exploration of the issues faced by men living with MS.
■■ Men
■■ Progressive
MS Telephone Peer Support Group: In an effort to target information for individuals with the progressive forms of the disease, this group will be launched in the fall of 2014. We expect that the convenient telephone format will eliminate the transportation and attendant care issues that may restrict attendance at neighborhood support groups.
& Converstation: The Delaware Chapter’s longest running self-help group has been meeting monthly for over 20 years! Led by Sonia Norenberg, this group meets in Wilmington and is a very traditional one with some emphasis on socialization activities.
■■ Coffee
■■ Friendly Visitor Program: This spring we will
be starting a Friendly Visitor peer connections program at the Raker Center at Good Shepherd in Allentown. Presently, we are training two volunteers to offer companionship to people with MS, who are socially isolated in order to increase their connection to their community. The Delaware Chapter has a Friendly Visitor Program that has been operational for the last few years and provides monthly visits to those in long-term care. Volunteers are always needed to meet the demand so if you have a few hours to spare or want to sign up to become a Friendly Visistor, please contact the chapter. with Life & MS: Led by Barbara Meyer, meeting once a month in north Wilmington. Focus is on developing and sharing coping strategies.
■■ Coping
Street Circle of Friends: Led by Sara Cavanaugh, meeting once a month in the evening in Newark, DE. A very friendly group with emphasis on connections and support.
■■ Main
Friday Night Group: Led by Andy and Leslie Ortiz, meeting once a month in Dover, DE with an emphasis on education and shared solutions. n
■■ Dover
There are over 35 support groups in communities throughout your area. For a full listing visit tinyurl.com/MSSupportGroups or call 1-800-FIGHT-MS.
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MS connection: SPRING 2014
New MS Connection Opportunities for you and your loved ones St. Mary’s Life Center 2500 Northgate Road Trevose, PA 19053 Regular Meetings are held the Second Tuesday of Every Month at 6:00 p.m.
For persons living with MS Beth Ann Petix and Amy Taklif, LSW will be leading a self-help group with opportunities to gain peer support and receive the latest info on research, treatments, programs and services available. For more information, please contact group leader, Beth Ann Petix at tapnangel99@aol.com or call her at 215-932-7012.
For Loved Ones of persons with MS Families and loved ones will have an opportunity to address their questions and concerns in a separate meeting held in an adjacent room on the same night and time. Christine Etzrodt is uniquely qualified to support families as a practicing counselor with a Master’s degree in Clinical and Counseling Psychology and real life experience as the loving wife of a man with MS. For more information, please contact group leader, Christine Etzrodt, cetzrodt@gmail.com or 267-229-6237.
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West Chester YMCA Connections West Chester YMCA 605 Airport Rd, West Chester, PA 19380 Regular meetings are held the second Saturday of every month at 11:00 a.m. For more information, please contact group leader, Gina Daddazio at 610-331-4646 or gina.daddazio@yahoo.com, or contact Pat Thieringer, Community Outreach Manager at pat.thieringer@nmss.org or call her at 215-271-1500.
Marlton MS Connections Sovereign Grace Church Community Room 111 Greentree Road Marlton, NJ 08053 Meetings are held on the first Monday of each month from 1:00 p.m. - 2:30 p.m. For more information, please contact the group leader, Tricia Elliott, M.S., L.P.C. telliottms@yahoo.com or call her at 609-970-6098. You may also contact Pat Thieringer, Community Outreach Manager at pat.thieringer@nmss.org or call her at 215-271-1500. n
Hockey keeps MS in Check The Riverfront Raiders Ice Hockey Club raised more than $3,500 at its second “Hockey Keeps MS in Check—Score for a Cure Game” at the Flyers SkateZone in Voorhees, NJ. Three of the team members’ mothers have MS. Thanks to everyone who made this event a success.
Kathy Conard and Denise TayloR Celebrate at the Flyers Skate Zone.
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MS connection: SPRING 2014
Ask the Employment Expert Christina Forster is the employment services manager for Pennsylvania and Delaware.
If I am receiving Social Security Disability benefits, are there certain jobs I can or cannot do? In particular can I start my own company or work from home?
There are no specific jobs that people with MS can and cannot do while receiving benefits. The important thing is to remember to stay within the earning limits and report your earnings in order to maintain your benefits. There are great resources available to help you if you are looking to start your own business or work from home. One great resource is the Job Accommodation Network (JAN). They have a self-employment and entrepreneurship service (askjan.org /1-800-526-7234.) As well,
your local MS chapter can provide you with additional resources and the state vocational rehabilitation program can potentially provide you with assistance with training and starting your own business. If you are interested in working from home, visit www.ratracerebellion.com for a wealth of information on jobs you can do from home, including legitimate job leads and forums you can participate in to gain more information on how to work from home. If a person is receiving social security and wants to work from home, we recently connected with an employment network called My Employment Options. Their website is www. myemploymentoptions.com and they focus on assisting people on Social Security and have several contracts that allow a person to work from home. Oftentimes these positions are above the substantial gainful activity level so there is that risk of eventually losing your benefits. But it’s another resource to explore. n
Do you have an employment question or concern that you would like to discuss? ■■ Curious about workplace disclosure? ■■ Need a reasonable accommodation? ■■ Wondering about disability benefits? Come to our Employment Consultation Day: at our Delaware Chapter Office Two Mill Road, Suite 106 Wilmington, DE 19806 FOR MORE INFOrmation CALL 302-655-5610.
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WORKING WITH INCENTIVES Effective January 1, 2014, recipients of Social Security Disability Insurance, or SSDI, received a 1.5% cost of living adjustment (COLA) to their monthly benefit check. However, COLA also affects certain work incentives that recipients often turn to when attempting to return to work.
The Trial Work Period For individuals who receive SSDI, the trial work period, or TWP, allows that person to test his or her ability to work while retaining full benefits. The TWP comprises nine months, which do not have to be consecutive, in a 60-month time period. In 2014, the amount that someone can earn to count toward the TWP has been increased to $770 per month gross income. However, regardless of how much you earn during the TWP, you will continue to receive your full financial SSDI benefit.
Substantial Gainful Activity Once you have completed the TWP, you will no longer meet the Social Security Administration’s definition of disability if you continue working and earning a significant amount of money. However, the Substantial Gainful Activity (SGA) is another work incentive that may help people transition back to work. In 2014,
the amount you can earn per month toward the SGA has been increased to $1070 per month gross income. (For individuals who are legally blind according to the Social Security Administration, the SGA has been increased to $1800 per month.) If your income exceeds the SGA limit, then SSDI benefits may cease.
Do your research Before doing anything that could jeopardize your benefits, do your research. Contact your local Work Incentive Planning and Assistance (WIPA) program to speak with a Community Work Incentive Coordinator, who can discuss these work incentives, as well as others including Impairment-Related Work Expenses, Ticket to Work, and Expedited Reinstatement of Benefits. Visit www.socialsecurity.gov/work/WIPA. html for information about WIPA, or find contact information for local programs at www. choosework.net/resource/jsp/searchByState. jsp. Also call an MS Navigator at 1-800-3444867 for your local WIPA program. You can also learn more about work incentives by participating in a Work Incentive Seminar Event (WISE) online webinar. Visit www. choosework.net/wise for more. Get informed and determine if work incentives can work for you. Steve W. Nissen, MS, CRC, is the Society’s senior director of Employment & Community Programs in Washington, D.C. n
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Spotlight on Summer Family Programs With the weather finally breaking, it’s time to start thinking about ways you can get out and enjoy the nice days. The National MS Society is offering great programs this summer that you can enjoy with the whole family.
MS Family Night with the Reading Fightin’ Phils Thursday, June 19, 2014 7:05 p.m. Reading, P.a. Clients living with MS are invited to bring up to four guests to enjoy an evening with the Reading Fightin’ Phils as they take on the Akron RubberDucks. Enjoy free parking, fireworks, and a post-game concert at this festive, family-friendly baseball game. Each guest will receive a food voucher good for one hot dog and one soda for use at any vendor in the stadium. Before the game, visit the VIST Financial Plaza and enjoy pre-game giveaways, live music, and beer specials. Stop by our table and pick up information about National MS Society activities and have the kids try
MS connection: SPRING 2014
out the MS Lab, a kid-friendly experiential education activity that allows participants to “experiment” with the symptoms of multiple sclerosis. Tickets for this program are provided by the National MS Society at a reduced rate of $5.00 per person for those age 5 years and up. The deadline to register is Tuesday, June 17, 2014. Register online by visiting calendarMS.org or by calling 1-800- FIGHT-MS (option 1).
Adaptive sailing adventure Monday, May 12, 2014 Inner Harbor Baltimore, M.D. Coming May 12th, an Adaptive Sailing Adventure at the beautiful Inner Harbor in Baltimore, MD. Join us for a day trip to the Inner Harbor where you will have lunch and enjoy a leisurely afternoon sailing on the water. All levels of ability are welcome! Call the office at 302-655-5610 or 1-800-FIGHTMS for more information.
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nationalmssociety.org | 1-800-FIGHT-MS
Adventure Fund Activities like the Adaptive Sailing Adventure are made possible through the Arthur Stapler Memorial Adventure Fund. In addition to group activities such as the annual Winter Weekend Getaway, a river dinner cruise and theater trips, these funds are available to you on an individual basis. Any member in the area who wants to experience a once-in-alifetime adventure or activity is eligible to apply. Awards are granted up to a maximum of $600 per person. For more information or to apply, visit our website at www.msdelaware. org or call the office at 302-655-5610, (in the Wilmington calling area), or toll free at 1-800-FIGHT-MS. n
MORE PROGRAMS Below is a list of some of our upcoming offerings for people living with MS. Call 1-800-Fight-MS or visit calendarMS.org for more information or to register.
Gotta Go, Gotta Go!: May 13 Join this Links Teleconference Series for an update on bladder problems.
Complimentary approach to MS: May 20 Join this Links Teleconference Series.
Research and Treatment options: May 27 Join this Links Teleconference Series.
Progressive MS: June 17 Join this Links Teleconference Series. A great deal of information is distributed electronically - research and advocacy updates, programs and events, and perhaps most importantly of all, an electronic client newsletter. If we don’t have a valid email address on file for you, you are not able to receive this valuable information. Please call your chapter at 1-800-FIGHT-MS today to be added to our electronic distribution lists.
Relationship MATTERS: SUMMER This educational workshop for couples affected by MS focuses on teaching and practicing communication skills in order to enrich relationship satisfaction.
THe Latest in MS Medications: SUMMER Learn about the newer MS disease-modifying therapies at this informative program for people living with MS and their loved ones. n
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MS connection: SPRING 2014
May 31 & June 1 This event is an unforgettable two days of fun in the great outdoors featuring a muckfilled obstacle course for teams to slosh, slip and slide through while helping to create a world free of MS.
REGISTER TODAY!
MUCKFESTMS.COM September 6 & 7, 2014
CHALLENGEPHILLY.ORG
Challenge Walk MS is more than just a walk. It’s a commitment to the more than 14,000 local people living with MS that you will go the distance to fight this disease. Join us at the beautiful Eastern Shores of Maryland as we walk to find a cure.
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nationalmssociety.org | 1-800-FIGHT-MS
LOCAL UPDATES State Disability Day
Disability Day in Legislative Hall was held on April 2, 2014. The Delaware Chapter was present in full force, sporting their orange, and met with several legislators to discuss pending State legislation and the National MS Society’s State Unified Agenda issues. The Government Relations Committee is busy working on several legislative initiatives affecting persons with MS. Transportation, voting rights and discrimination continue to be a focus of this group. Anyone interested in becoming a member of this committee is invited to apply by contacting Debra Veenema at 1-800-FIGHT-MS or debra.veenema@ nmss.org.
Federal PUBLIC POLICY CONFERENCE
The Public Policy Conference took place March 10th through 12th. Issues at the federal level that were discussed with staff at the offices of Senators Coons and Carper and Representative Carney were: ■■ Funding
for the NIH, CDMRP and the FDA. Funding of these organizations increase the speed in which drug therapies become available to consumers.
■■ Complex
Rehabilitation Technology (CRT). This legislation calls for the creation of a CRT category in Medicare for devices of a complex technological nature – devices that are customized and require a specialist to provide and to service. This will move these devices out of the Durable Medical Equipment (DME) category and make them more readily available to the consumer. DME was created over 40 years ago for the aging population. CRT is generally used by younger people with significant disabilities. n
join the discussion online
ADVOCACY
PA:
msactivepa.wordpress.com
facebook.com/MSPACAN
@MScanPA
NJ:
msactivenj.wordpress.com
facebook.com/MSNJCAN
@NMSSNJCAN
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Face of MS: John Platt
Every year, MS advocates from across the country converge on Capitol Hill in Washington, D.C. to ensure our federal officials hear the collective voice of the MS community.
In March 2014, Society volunteers and staff gathered to advocate for: ■■ Adequate
funding for MS research and the FDA, to ensure more MS treatments are available as soon as possible
■■ A
separate Medicare benefit category be created for complex rehab technology, increase access to life-changing medical equipment
■■ Officials
to show their support by joining the MS Caucus, a group created to further the mission of the MS Society
MS connection: SPRING 2014 This year, John Platt, the chair of the Pennsylvania Government Relations Committee, attended his seventh public policy conference. Here are his thoughts.
Why is the Public Policy Conference important to you? PPC is important to me in its least common denominator. No matter the topic or issue we advocate, we bring MS Awareness to the legislators on Capitol Hill. For all issues, MS Awareness in principle, is the root origin. In attending PPC, I believe I can create MS Awareness, thus creating positive change.
What was your most memorable moment from the Public Policy Conference? My most memorable moment happened a few years ago when a woman, named Patti, approached me after I spoke on government relations 101. She told me how her daughter was diagnosed with MS. Patti was hopeful her daughter could manage her MS and become a voice for the community like myself. Years later, I was touched and inspired by a woman speaking at PPC. That woman, was Channing Barker, Patti’s daughter! A connection was created and remains today.
nationalmssociety.org | 1-800-FIGHT-MS
What do you consider your biggest success from the PPC experience/ Capitol Hill visit? Being an individual that helped influence legislators to create a single line appropriation within the Congressional Directed Medical Research Program for Multiple Sclerosis. This created direct funding for MS research within the US Government.
In your opinion, what is the key to getting elected officials involved in the MS movement? A simple way to get them involved is to ask them to take interest in you, the constituent,
VOLUNTEER TO MUCK AROUND 215-271-1500 or joy.mcmanus@nmss.org
27 and the issues that are important to you. Urge them to join the Multiple Sclerosis Caucus and learn about this disease. Invite them to your MS Community events to see MS and its effects first hand.
How and why should others become MS activists? We all have a voice and we all have a story. There are various levels of activism within the National MS Society, but one thing is certain. If we don’t speak up about issues important to the MS Community, no one will ever address and correct those issues. Be the individual that creates awareness and pushes us forward. One step forward is called progress, take the next step for a world free of MS. n
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1-800-FIGHT-MS n nationalMSsociety.org
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