FALL 2014 Delaware, Southeastern Pennsylvania & South Jersey MSConnection Newsletter Facing off with MS In his days as a hockey player, Bill Clement faced some very tough challenges. During his career he won two Stanley Cups with the Flyers, he played in two all-star games and was the of the . He was slashed, cross-checked and tripped, but that’s nothing in comparison to what happened after he hung up the skates for good. A personal bankruptcy and raising a daughter with special needs were just two of the challenges he faced; and then his daughter Christa started to have MS-like symptoms. You can hear Clement discuss hockey, business and MS at one of our upcoming annual meetings. Find out how you can register on page 08. INSIDE 06 09 10 14 26 National Advancing The THE ALTERNATIVE Face of MS: THIS Caregivers Myelin Gathering WORK Joan Month Research Table ARRANGEMENT Wheeler ISSUE MAZE 02 MS connection: FALL 2014

GREATER DELAWARE VALLEY CHAPTER DELAWARE CHAPTER National Multiple Sclerosis Society National Multiple Sclerosis Society 30 South 17th Street, Suite 800 2 Mill Road, Suite 106 Philadelphia, PA 19103 Wilmington, DE 19806 1-800-548-4611 302-655-5610 Chair: Marianne Jackson Chair: Maria McCabe Vice Chairs: Valli Baldassano, Roger Dennis Vice Chair: Matt Lenzini President: Tami Caesar Interim President: Craig Robertson

Connect with us online: Connect with us online: nationalMSsociety.org/pae n [email protected] nationalMSsociety.org/ded n [email protected]

Like us: facebook.com/greaterdelMS Like us: facebook.com/msdelaware Follow us: twitter.com/greaterdelMS Follow us: twitter.com/MSSocietyDE Watch us: youtube.com/nmsspae Watch us: youtube.com/mssocietyde Pin us: pinterest.com/greaterdelvalMS Pin us: pinterest.com/MSsocietyDE

©2014 National Multiple Sclerosis Society, here solely because they are considered Greater Delaware Valley Chapter valuable information. The Society assumes no liability for the use or contents of any product Information provided by the Society is based or service mentioned. upon professional advice, published experience and expert opinion. Information provided MSConnection welcomes letters to the editor. in response to questions does not constitute Send letters to [email protected] one therapeutic recommendations or prescriptions. of the addresses above. Include your name and The National Multiple Sclerosis Society a phone number or email address where we can recommends that all questions and information reach you, if necessary. be discussed with a personal physician. NOTE: We may edit your letter for length and The Society does not endorse products, content. services or manufacturers. Such names appear nationalmssociety.org | 1-800-FIGHT-MS 03

Letter from the presidents dollar raised over the past 35 years has helped people diagnosed with MS overcome their daily challenges while another portion Pedaling for has furthered research into stopping MS progression, restoring nerve function and progress ending MS forever. This past month we received news that the FDA approved Every September, the Plegridy, making it the 11th disease National MS Society modifying treatment for MS. hosts two of the best Bike MS events in the country On that day of the very first Bike MS right here in our area. For event, there were no treatments for people decades, Bike to the Bay living with MS, nor were there many direct Tami caesar, and City to Shore have services available to help people affected president, been generating funds Greater Delaware by the disease. The progress the MS Valley Chapter and bringing new people community has experienced in treatment to the MS movement. options as well as community resources can This September, the be directly attributed to the hard work of two rides attracted an our cyclists and volunteers, some of whom amazing 8,000 cyclists have been with us from the very beginning. and generated nearly $7 On behalf of the thousands of people who million. have been helped by your commitment and And that’s only part of generous spirit, we thank all the cyclists, Craig Robertson, Executive Vice the Bike MS story. Our committee members and volunteers who have president, two local rides are part of made this one of our most successful Bike East Region a vast national network of MS campaigns ever. And we look forward to more than 100 rides that working with you over the next 12 months to have raised $1 billion since the first ride make Bike MS 2015 even better. was launched in Minnesota in 1980 – and Sincerely, in excess of $80 million in 2014 alone. So when we consider all the progress that has been made in MS research, treatment Craig Robertson, Tami Caesar, President and care over the years, we should not Executive Vice Greater Delaware overlook the importance of the Bike MS President, East Region Valley Chapter fundraising campaign as one of the most successful and impactful fundraising campaigns in history. Part of every single 04 MS connection: FALL 2014

Baltimore) and the study accelerate results with is funded by a research the most impact and to News grant from the National change the lives of people MS Society, with partial living with progressive BRIEFS support from the Society’s MS,” commented Dr. Greater Delaware Valley Alan Thompson, Chair of Chapter. the Alliance’s Scientific MS TRIAL ALERT: Steering Committee and TRIAL OF VITAMIN D GLOBAL EFFORT TO Dean of University College London Faculty of Brain SUPPLEMENTATION END PROGRESSIVE MS Sciences. RECRUITING PEOPLE GETS $30 MILLION IN WITH RELAPSING- RESEARCH FUNDING SALT INTAKE MAY HAVE AN IMPACT ON MS REMITTING MS- NOW The International RECRUITING IN Progressive MS Alliance ACTIVITY has awarded its first round A recent study, which PHILADELPHIA of 22 research grants to followed a cohort of investigators in 9 countries, Investigators at several 70 relapsing-remitting with the of removing centers nationwide are patients with MS, showed barriers to developing recruiting 172 people that patients with moderate treatments for progressive with relapsing-remitting to high sodium (salt) intake MS. The Alliance is a MS to compare the also have increased disease worldwide collaborative effectiveness of the current activity (more clinical focused on finding recommended amount of relapses and more lesions solutions to progressive vitamin D supplementation on MRIs). versus high dose vitamin forms of multiple sclerosis The study was conducted D supplementation at that have so far eluded the by Dr. Mauricio Farez, reducing MS disease scientific community. a lead researcher at the activity, when added “By bringing attention to Raul Carrea Institute for progressive MS, convening to standard therapy Neurological Research academic and industry with glatiramer acetate in Buenos Aires. It was leaders, and offering a new (Copaxone®, Teva published in the Journal of source of grant funding Pharmaceutical Industries). Neurology, Neurosurgery to researchers around The principal investigator and Psychiatry. is Ellen Mowry, MD, MCR the world, the Alliance (Johns Hopkins University, is positioning itself to nationalmssociety.org | 1-800-FIGHT-MS 05

SLEEP DISORDERS OFTEN significantly interfere with However, Dr. Rotstein a person’s ability to function did note that obesity in UNDIAGNOSED IN PEOPLE at home and work, and is adolescence has shown to LIVING WITH MS one of the primary causes have an increased risk for of early departure from the developing MS. In a recent study, researchers workforce. Fatigue may “Our study was conducted at UC Davis have be the most prominent purely in adults, with a found that undiagnosed symptom in a person who youngest age of 25,” said sleep disorders may be otherwise has minimal Dr. Rotstein. “All we can responsible for the fatigue activity limitations. The say from our results is that many people with MS cause of MS fatigue is there does not appear to experience. The study was currently unknown. be a direct relationship conducted in over 2,300 between diet quality and individuals with MS and DOES DIET AFFECT MS? risk of developing MS as found that more than 70 an adult. We cannot say percent of participants In a recent study on a anything about eating screened positive for one or group of 185,000 women, habits in adolescence and more sleep disorders. researchers found that risk of MS from these “Sleep disorder frequency, there was no relationship data. It is possible that sleep patterns and between eating a high- the adolescent years are a complaints of excessive quality, healthy diet and a critical window, but our daytime sleepiness suggest reduced risk of developing study doesn’t answer that that sleep problems may be MS. question.” n a hidden epidemic in the “We did not find any MS population, separate evidence that overall from MS fatigue,” said dietary quality is associated Steven Brass, the associate with the risks of multiple clinical professor and sclerosis,” Dalia Rotstein, director of the Neurology MD, from Brigham and Sleep Clinical Program and Women’s Hospital, Boston, co-medical director of the Massachusetts, concluded. UC Davis Sleep Medicine “However further research Laboratory. is required to determine Fatigue is one of the most the possible role of dietary Visit us online at common symptoms of quality in the early years nationalMSsociety.org/ MS, occurring in about 80 and in individual dietary research to stay on top of percent of people. It can elements.” the latest in MS research. 06 MS connection: FALL 2014

ber of people in the U.S. NOVEMBER will likely take on care- IS NATIONAL giver respon- sibilities and experience a CAREGIVERs range of re- percussions related to MONTH the time, ac- tivities and November is National Caregivers Month – money that a time to acknowledge friends, family and they must neighbors who provide care to others. allot to care- Show your caregivers some giving. According to the Family Caregiver Alli- appreciation ance, a caregiver refers to “anyone who pro- vides assistance to someone else who is, in Who are Caregivers in the U.S.? some degree, incapacitated and needs help: The following statistics offer more infor- a husband who has suffered a stroke; a wife mation on caregivers and reveal trends re- with Parkinson’s disease; a mother-in-law garding the characteristics of caregivers in with cancer; a grandfather with Alzheim- the U.S.: er’s disease…” Caregivers often provide a range of services, from emotional and spir- ■■ 65.7 million caregivers make up 29 percent itual support to assistance with financial of the U.S. adult population providing care matters, transportation and management to someone who is ill, disabled or aged. of health care. ■■ More women than men are caregivers. An Caregivers provide an estimated $450 bil- estimated 66 percent are female. One-third lion worth of uncompensated care to loved (34%) takes care of two or more people, ones annually. In addition, according to and the average age of a female caregiver is the Family Caregiver Alliance, unpaid 48. family caregivers will likely continue to be ■■ Many caregivers of older people are them- the largest source of long-term care servic- selves older adults. Of those caring for a es in the U.S. Given the statistics on the person age 65 plus, the average age of care- increase of the older population and rates givers is 63 years with one-third of these of illness among older adults, a high num- caregivers in fair to poor health. nationalmssociety.org | 1-800-FIGHT-MS 07

The Administration on Aging website pro- vided these statistics. For additional infor- mation please visit their website at: www. aoa.gov. For resources specifically for care- givers there are a number of organizations that may be helpful: National Alliance for Caregiving, Family Caregiver Alliance, Family Caregivers Network, and AARP to name a few. In Delaware, Easter Seals pro- vides respite programs. Visit their website for more information www.easterseals. com/de. The National MS Society has a wealth of information specifically aimed to provide education and support to caregivers. Please visit our website www.nationalMSsoci- ety.org and type “caregiver” in the search box to access these resources. n

Do you have a caregiver that you want to recognize for his or her outstanding HONORING commitment and care? Send us an essay RICHARD VAGUE, about why your caregiver is exceptional MANAGING PARTNER, and you could win a weekend getaway GABRIEL INVESTMENTS AND for your caregiver and a guest to CHAIRMAN, THE GOVERNOR’S WOODS FOUNDATION Rehoboth Beach! This contest is open to all clients in the delaware For more information, visit nationalMSsociety.org/pae. chapter. For more information, call 302-655-5610. 08 MS connection: FALL 2014

Cover Story Continued “We were stunned. A few weeks later my wife The upcoming annual meetings in Cherry and I stood right beside Christa when the Hill and Newark are your opportunity to hear diagnosis was confirmed as MS. She was scared about Bill’s life before and after hockey, as well and so were we but I could also see hope and as learn about how his family is taking a head optimism in Christa’s eyes,” Bill recalls. “I knew on approach to overcoming MS. n our daughter was going to attack the MS as aggressively as the MS has tried to attack her.”

FEATURING: FEATURING: • Featuring a research update with Dr. Jason • Featuring a research update with Dr. Jeff Bulte, Silversteen, Director of the MS Center at Professor of Radiology and the Director of the Christiana Care Hospital; Clinical Assistant Cellular Imaging Section at Johns Hopkins Professor of Neurology, Drexel University College University and the lead investigator of an MS of Medicine; Chair, Clinical Advisory Committee, Society funded nervous system repair study National MS Society, Delaware Chapter • Keynote presentation by Bill Clement, two- • Keynote presentation by Bill Clement, two- time champion with the Broad time Stanley Cup champion with the Broad Street Bullies and NBC Sports broadcaster Street Bullies and NBC Sports broadcaster • Resource fair featuring exhibitors from • Volunteer, service and fundraising awards throughout the area • Great food and a chance to connect with others in • Volunteer and fundraising awards the MS community and to learn about the latest • Great food and a great chance to connect with developments in the world of MS research the MS community

December 6, 2014 December 13, 2014 Embassy Suites Hotel CrownE Plaza Cherry Hill 654 South College Avenue, Newark, DE 19713 2349 W. Marlton Pike, Cherry Hill, NJ 08002 To register, visit www.nationalmssociety.org/DED To register, visit www.nationalMSSociety.org/pae in November. or call 1-800-FIGHT-MS (option 1). nationalmssociety.org | 1-800-FIGHT-MS 09

RESEARCH a key technology that can speed drug discovery exponentially and several groups are now working on screening FDA-approved therapies Advancing for their ability to drive myelin repair. If the research is able to successfully identify drugs that can repair myelin, we will be many steps ahead Myelin research of the game since these therapies are already on the market for treating different diseases. By Claude Schofield, PhD If we are going to repair the myelin sheaths Welcoming young scientists that protect nerve connections and which Another thing I like about the Gordon are damaged in multiple sclerosis, we have to Conference is how it welcomes young know everything possible about how myelin is scientists. A symposium just before the main normally made in healthy people. That means conference features talks by researchers in the studying the cells that make myelin, the genes beginning stages of their career, providing an that instruct them and the molecules with which opportunity for them to present their work they interact. This requires the whole scientific and to make important connections with community working together – and that’s other young scientists. what happens at the Myelin Gordon Research Conference in Ventura, California, each March. This year, the symposium was chaired by Brad Zuchero, PhD, of Stanford University, who The goal of the conference is to bring together just received a Career Transition Fellowship leading experts in the myelin field from around Award from the National MS Society to work the world. Scientists and clinicians from in the lab of neurobiologist Ben Barres, PhD. academia and the industry and nonprofit Zuchero is using new tools to study the biology arenas gather to share and coordinate their behind how myelin wraps around nerve fibers. research efforts. I like the conference’s open He hopes to discover new clues for repairing spirit, which leads to important collaborations myelin which may ultimately translate into on areas of research where there are unmet ideas for therapies for people with MS. needs. Such a wide of collaboration is absolutely necessary if we are to move research To learn more about myelin repair, hear Dr. forward faster and find solutions that will Jeff Bulte of Johns Hopkins live on Dec. 13 in change the lives of everyone with MS. Cherry Hill. See page 8 for more details. n

Ahead of the game Dr. Claude Schofield is director of Discovery Very promising research was presented at the Research at the National MS Society. conference on what’s called “high-throughput Originally published on www.MSconnection. screening,” which allows researchers to org/blog examine thousands of drugs at once. This is 10 MS connection: FALL 2014

The disease had entered Michael’s life when he was just a child, taking away his mother when he was 16. Now it was back for his wife. Worried that I might not be able to walk for much longer, I asked myself the question, “Then to where should I walk now?” My answer: to the kitchen! An avowed foodie, I always loved to cook. My kitchen is my sanctu- ary, where I can dispense with aggravations while surrounded by the aroma of bubbling soups and the comforting familiarity of my pots and pans. What better place to face the fear gnawing at my gut? It might not have been a conventional treat- ment plan, but why not attempt to triumph over NEWLY DIAGNOSED MS with steaming plates of pasta? However, when I made the audacious vow to The gathering my husband that I would host a dinner party every Sunday night for an entire year as a means of warding off this disease, he thought I had lost Table my mind. One would have to be a bit certifiable to think about cooking 52 dinners while living By Ronda Giangreco with a neurological condition, but a discussion about parties would be immensely more enter- On July 26th, 2008, I was a 53-year-old wom- taining than one about motorized wheelchairs. I an who considered herself very fortunate. I was would stare down MS with spatula in hand. just back from my latest adventure at a cooking school in Italy. My husband, Michael, and I had We began by inviting every friend we knew. The spent the day wine tasting in Napa with friends. first six who accepted the invitation would join us Life was good. at our home in Sonoma, Calif., for an evening of laughter, good food and plenty of great wine. One day later I was a disabled woman. Throughout the year, we added people we had Learning that your wife has been diagnosed met at events, through friends, and even a with sudden onset multiple sclerosis would woman I had struck up a conversation with in be difficult for any man to accept, but for my a grocery store aisle. Eventually, more than 130 husband it was a particularly cruel twist of fate. people received our email invitation each week. nationalmssociety.org | 1-800-FIGHT-MS 11

As we sat around our big, square dining table fear of the future. I learned from the stories of — referred to in the furniture industry as a others that the challenges we all face help form “gathering table” — we heard stories that made the core of who we are, giving us an insight into us weak with laughter and others that brought the strength within. The icing on the cake … I tears to our eyes. We were given fresh insights was still on my feet. MS didn’t win. I did. into the people we thought we knew well, while I could never stomach my story being touted we also formed dozens of new friendships. as yet another example of how merely thinking positively can change the course of your life, though. Anyone who has spent time in a hospital I learned from the stories of bed looking up at grim faces knows that there are some hurdles you cannot clear just by others that the challenges we all employing a perky disposition. The last thing face help form the core of who we I want to do is add to anyone’s burden by sug- are, giving us an insight into the gesting otherwise. My tale is not about bucking up. strength within. Simply put, it is a story about learning that I had more grit and resolve than I had imagined. I found that good friends are a powerful thera- There was the sweet, older neighbor who joined py, and I discovered that even though fate may us for dinner one night and informed us that he shove you in a direction you don’t want to go, had been Bozo the Clown in his younger days. you can still find a means of traveling the road The entire table was awestruck when he burst on your terms. n into character. Then we discovered one of our friends had helped make The Allman Brothers Ronda Giangreco has written rock band famous. Another had been on a a book about her year- plane with the terrorists a week before 9/11. long adventure called The We had staunch conservatives sitting across Gathering Table — Defying from diehard liberals. We hosted Christian Multiple Sclerosis with a Year fundamentalists at the same table as a lesbian of Pasta, Wine & Friends couple. And everyone learned there is more available at www.amazon. uniting than separating us. com. Learn more at www. thegatheringtable.net. By the time week 52 arrived, I had made gallons of marinara sauce, scores of ravioli and mountains of gelato. In doing so, I was able to conquer my 12 MS connection: FALL 2014

Living with MS Perhaps we feel our symptoms more acutely when our vitamin D reserves are at their winter lows, although this hasn’t been confirmed yet MS Symptoms by scientific studies. Here are a few tips to help you enjoy the colder and winter months if you are bothered by frigid temperatures. ■■ Soak up sunshine during the warmest part weather of a sunny winter day to help your body produce vitamin D. By Julie Stachowiak, Phd ■■ Don’t overdo the heat. When I get cold, I Most of us with multiple sclerosis are heat tend to take really hot showers. Recently, I intolerant to the point of being unable to function got dangerously dizzy during one. Remem- outside during peak summer temperatures. But ber, extreme heat is not our friend, either. when I asked people with MS on my blog at ■■ Warm yourself from the inside. Drink a hot www.ms.about.com what their MS temperature beverage to take the chill off. “limits” were, I was surprised when several people Like many other situations that we must navigate said that the cold wasn’t so great for them, either. through with MS, a little strategic planning of Many people complained of increased spasticity winter activities can help you have some control in cold weather. Readers mentioned that their over symptoms. Put some thought into what you limbs “felt like wood” or that their joints ached enjoy doing in the winter, take a couple more pre- n during lower temperatures. A couple of people cautions and get the most out of the cold months. also mentioned that the MS “hug” could be intolerable in the cold. (The MS hug is the Diagnosed with MS in 2003, Julie Stachowiak, gripping feeling around the torso that is caused PhD, is the author of The Multiple Sclerosis by a lesion in the spinal cord that results in Manifesto. spasms in the tiny muscles between the ribs.) Originally published on www.blog.national I also know that some people with MS tend to MSsociety.org. feel more fatigued in winter months. This could be an indirect result of coping with some of the symptoms mentioned above. It could also be that the shorter days and limited sunlight exacerbate depression, which can be a symptom of MS. New data is emerging all the time on the role of vitamin D in MS. nationalmssociety.org | 1-800-FIGHT-MS 13

close to full time hours, the SSA may take notice and have reason to believe that you Ask the can work full time. If you are receiving SSDI or Supplemental Employment Security Income (SSI) benefits, the SSA will review your medical condition from time to time to make sure you are still Expert disabled. For the most part, if your health hasn’t changed, or your disability still Can you work keeps you from working, you will continue for multiple to receive your benefits. employers The frequency of the review depends on each for only the nature and severity of your medical condition and whether it is expected to limited hours per improve. The review process is designed to month and not risk give you every opportunity to show that Christina disability status? you are still disabled and to assure your Forster is the benefits are not stopped incorrectly. employment services Potentially. A If they audit you and have questions about manager for person can work whether you are still disabled, the SSDI Pennsylvania while receiving will have to re-determine if you are still and Delaware. Social Security considered disabled, and if so, benefits Disability continue; however, if not, your benefits Insurance (SSDI) would stop. You would not have to pay benefits but you want to stay under the back any benefits you were collecting n substantial gainful activity (SGA) level during this time. of $1070 per month. A person can utilize the trial work period and receive more than that for up to nine months during a five year period. The Social Security Administrative (SSA) doesn’t necessarily say how many hours or jobs a person can or cannot work while receiving benefits with the exception of self-employment but you do want to consider it. If you’re working 14 MS connection: FALL 2014

requested and negotiated some flexibility in where the work is performed. There are several NAVIGATING THE articles that discuss telework as a reasonable accommodation which provide suggestions on ALTERNATIVE WORK how to make the request to your employer: Work At Home/Telework as a Reasonable ARRANGEMENT Accommodation ■■ www.worksupport.com/resources/ viewContent.cfm/477 MAZE ■■ www.eeoc.gov/facts/telework.html WORK FROM HOME AND SELF-EMPLOYMENT For even more accommodation ideas, contact the National MS Society at 1-800-344-4867 by Steven W. Nissen, M.S., CRC or the Job Accommodation Network (JAN) at Telework, telecommuting, work-from-home, 1-800-526-7234 or online at www.askjan.org. self-employment. What do all these work Some individuals would prefer to find positions arrangements mean and what resources are that are advertised to be done completely from available to help determine what might work home. Be careful when applying for these types for you? of jobs as there are a lot of scams out there. Some We often hear from people with MS that they other things to investigate include determining would prefer to work from home. But this can if you are responsible for filing your own taxes mean different things based on the individual, (1099 employee), what sort of technology and the situation, and the employer. Some people Internet service is needed, and payment schedule. may be able to work from home for their There are online resources that post work-from- employer as an accommodation. According to home job leads. Visit the following: the Americans with Disabilities Act (ADA), ■■ Rat Race Rebellion: an accommodation is “any change in the work www.ratracerebellion.com environment or in the way things are customarily ■■ Flexjobs: www.flexjobs.com done that enables an individual with a disability ■■ Pearl Interactive Network: to enjoy equal employment opportunities.” In www.pearlinter.org some situations, an accommodation could be having the ability to work from home part of ■■ My Employment Options: the time, known at telecommuting or telework. www.myemploymentoptions.com The employee might work a certain number (specifically for individuals receiving Social of hours or days per week from home. That Security benefits) employee still works for that employer, but has nationalmssociety.org | 1-800-FIGHT-MS 15

Self-employment is another option for some ■■ Your state Vocational Rehabilitation (VR) people, as the thought of being your own Agency: askjan.org/cgi-win/TypeQuery. boss can be appealing. It is important to exe?902 realize that managing a business is not for ■■ The Abilities Fund: www.abilitiesfund.org everyone. Oftentimes running your own There are many options available to you and business is more than a full-time job if you it’s important to plan ahead and get educated. are the person doing everything – providing The National MS Society can help by referring the services and products, submitting the you to additional employment resources. Visit billing, doing the marketing and follow-up www.nationalMSsociety.org/employment with customers. There are also different types and click on the link for Career Options. of self-employment arrangements out there, There are extensive resource lists pertaining such as franchise, independent contractor, and to work-at-home as well as self-employment. limited liability company (LLC). If you are An MS Navigator can also talk through considering self-employment, it is important employment considerations like disclosure to do a self-assessment to make sure it is right and accommodations. Call the National MS for you. Explore funding opportunities and Society at 1-800-344-4867. n support services to determine if you can make your dream of being a business-owner a reality. Some resources include the following: Steven W. Nissen, M.S., CRC is Senior Director, Employment & Community ■■ Job Accommodation Network’s (JAN) Programs for the National Capital Chapter. Entrepreneurship information: askjan.org/entre or 1-800-526-7234 ■■ WorkSupport Self-Employment Assistance: www.start-up-usa.biz

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. 16 MS connection: FALL 2014

Money Matters we serve, and I just enjoy helping in any way I can.” FINANCIAL After listening to callers’ concerns, Evan will make a referral to one of the Society’s partners. Depending on the need, Evan PLANNING WITH MS can connect clients to care managers for an in-person meeting to help with financial Living with multiple sclerosis (MS) can be planning, organizing, and calling insurance expensive. An individual with MS may spend companies. Evan can also connect clients to close to $70,000 a year on medical costs Clarifi, a nonprofit specializing in financial alone. Moreover, many people find it difficult counseling that helps with budgeting, credit, to continue working, especially if the disease debt management, and buying a house. If a progresses. People living with MS face some client is in the middle of a foreclosure, many extraordinary challenges, and it’s not always times Clarifi can negotiate on their behalf. easy to deal with them alone. For people just diagnosed with MS, Evan has That’s where Evan Marcus comes in. He a message: “MS affects the entire family. A lot is one of the three MS Navigators at the of times, caregivers aren’t able to work as well. Greater Delaware Valley Chapter. Evan is the It’s such an expensive disease and developing a important link between people facing financial plan early on can make a big difference down issues and those who can help. When people the line. “ call Evan, they are often dealing with credit and budget issues, medical costs, and even The National MS Society offers an extensive homes that are in foreclosure. In the face of variety of programs, services and resources those issues, Evan always stays positive. for people living with MS, including family members, carepartners and other members of “What I enjoy most is spending time on the the support system. To learn more, visit www. phone with clients,” Evan says. “I’m really nationalMSsociety.org/financialplanning fortunate to get to know a lot of the people or call an MS Navigator at 1-800-344-4867. n

The 2015 Scholarship Program launched on October 1, 2014. Applications will be accepted through January 15, 2015. If you are, or have, a college-bound student who is interested in pursuing a scholarship from the National MS Society, please visit www.nationalMSsociety.org/Scholarship for details and eligibility criteria or contact your local chapter directly. nationalmssociety.org | 1-800-FIGHT-MS 17

Ways to give an opportunity to make a charitable donation through payroll deductions. If your employer partners with Community Workplace Health Charities (CHC), look for the National MS Society listing under CHC. If your employer offers an independent campaign, ask Giving your program administrator how to designate Looking for your gift to the National MS Society. In a few a simple and areas, individuals may support the Society convenient through the United Way. way to Federal government employees and members of join the the U.S. Military Forces can support the Society movement? through the Combined Federal Campaign Participating in the charitable giving campaign (CFC) by designating their contribution to sponsored by your employer is an easy way CFC# 11409. to fund cutting-edge research and provide programs and services to help people affected If your employer doesn’t offer a giving by MS move their lives forward. Many national program, call us at 1- 80 0 -3 4 4 - 4 867, and local corporations offer their employees option #2, to see if we can help. n

Thank You Volunteers 18 MS connection: FALL 2014

Now celebrating its 36th year, the Thanksgiving Day Run/Walk for MS has become an important holiday tradition Thursday, November 27 for many families from Delaware and the surrounding areas. This fun event PNC Bank Center includes competitive 5K and 10K runs Wilmington, DE 19801 as well as a non-competitive 5K walk Registration: 8:00 - 10:15 AM and a kiddie fun run. Each event is 10K Run: 9:00 AM SHARP! led by Santa and Mrs. Claus, and the Kiddie Fun Run: 10:00 AM SHARP! 5K and 10K events take participants 5K Run: 10:30 AM SHARP! throughout Wilmington and include 5K Walk: Start 10:35 AM portions of the scenic Brandywine Park. After the events, participants enjoy lots Register Today! of delicious food and beverages and a www.MSRunWalk.org chance to take photos with Santa and 302.655.5610 option 2 Mrs. Claus as well as our giant Turkey! nationalmssociety.org | 1-800-FIGHT-MS 19

MSQuerade is a Mardi Gras inspired masquerade event benefiting the Delaware Chapter. This event will feature live music throughout the evening. Guests will have access to an extensive silent auction featuring premier auction items and services from Delaware Valley businesses, heavy hors d’oeuvres, fun activities along with complimentary drinks (beer & wine). An enhanced VIP experience includes an early reception (7 to 8 p.m.) and upgraded top-shelf alcohol all night. Get Your Mask On!

A SECOND SPIN FOR YOUR OLD WHEELCHAIR Looking for an item like a wheelchair, shower chair, scooter, etc.? Have something you would like to sell or donate? Call 215-271-1500 or visit the classifieds section on our website at www.nationalMSsociety.org/PAE for an up-to- date listing of available items and instructions on how to place your listing. 20 MS connection: FALL 2014

1. 2.

3. 4. 5.

6. 7.

8. 9. 10. Thank you to all our 2014 fundraising event PARTICIPANTS AND VOLUNTEERS. because of you, We are one step closer to a world free of MS! nationalmssociety.org | 1-800-FIGHT-MS 21

11. 12. 13.

1. Thanksgiving Day Walk/Run 2. Walk MS: Medford Lakes 3. Thanksgiving Day walk/run 4. Bike MS: Bike to the Bay 5. Bike MS: Bike to the Bay 14. 6. MSquerade 7. Bike MS: Bike to the Bay 8. Muckfest MS 9. Muckfest MS 15. 10. Preakness at the Piazza 11. Crankin’ for a Cure 12. Walk MS: Tyler State Park 13. WAMS 14. Challenge Walk MS 15. Zumbathon for MS 16. Bike MS: City to Shore 16. 17. 17. Bike MS: City to Shore 22 MS connection: FALL 2014

Cape May County Disabilities Awareness Day Upcoming November 15 • Avalon, NJ Please join us and over 50 other exhibitors Programs for a day of information, food, music and Below is a list of some of our upcoming of- fun for people with disabilities and agencies ferings for people living with MS. Call and organizations that serve the citizens of 1-800-Fight-MS or visit your chapter’s Cape May County. Admission is free and website for more information or to register. refreshments will be provided from 10 a.m. to 1 p.m. at the Avalon Elementary School MS Family Picnic at. Make sure to stop by the National MS October 18 • Dover, DE Society table to learn more about how we can assist you. Contact Pat Thieringer at 215-271- Back by popular demand! Join us for the 1500 or [email protected] for more Annual MS Family Picnic on October 18 at information. Silver Lake Park in Dover, DE. Come out and enjoy food, games, prizes and meet our staff Credit: Accessing it, and other families. There is no cost to attend Understanding it, Using it Wisely but we do ask that you register by calling the November 19 • 3:00 - 4:30 P.M. Delaware office at 302-655-5610 or 1-800 FIGHT MS. Due to space and funding National Disability Institute WEBINAR restrictions, we must limit the number per Credit affects many aspects of our lives that family to a maximum of six per household. we may not even realize. Establishing and Limited transportation may be available on an maintaining good credit will help in reaching as needed basis. goals (short-term, intermediate, and long- term). Maintaining credit involves many EASTER SEALS CAMP FAIRLEE RETREAT aspects of our financial lives including, but October 24 - 26 • Chestertown, MD not limited to, setting up a bill paying system Easter Seals Camp Fairlee is available to all to ensure that obligations are met on time, members of the National MS Society again as well as prioritizing debts with a plan of this fall. The weekend of October 24 - 26 reduction or outright elimination. We will also has been set aside for us. If you are interested explore the safest ways to access your credit in participating, please contact the chapter report, check the accuracy of information, and at 302-655-5610 or 1-800 FIGHT MS to understand your credit score and standing. register. Please visit www.realeconomicimpact.org/ FinancialWellness to register. nationalmssociety.org | 1-800-FIGHT-MS 23

The Nutcracker December 7 • Dover, DE Financial Webinar The holidays are just around the corner and in December The Ballet Theatre of Dover will perform the Nutcracker at the Schwartz Series Launched Center for the Arts in Dover, DE. Through On September 17, 2014, National Disability the Arthur Stapler Memorial Adventure Fund, Institute launched the fourth annual Financial the Delaware Chapter will provide tickets Wellness Webinar Series. This series of to a performance on Sunday, December 7 at webinars is designed to help people living with 2 p.m. If interested in attending, call the office MS plan for their financial futures, and will be at 302-655-5610 or 1-800-FIGHT-MS. held on the third Wednesday of each month Tickets are limited so get your seat early! through January 2015 (with the exception of December). Each webinar consists of a one- Treatment Update and resource fair hour expert presentation followed by a half- January 10 • Wyomissing, PA hour set aside for questions. Registrants can Call 1-800-Fight-MS or visit calendarMS. listen, watch and participate from the comfort org for more information or to register. of their own home. Guest speakers who live with MS will also offer a peer perspective New Year, New Financially Secure You during each webinar. January 21 • 3:00 - 4:30 P.M. Learning financial fundamentals is one of the National Disability Institute WEBINAR first and most important steps in building life- long financial wellness,” said Michael Morris, Start the New Year off on the right financial executive director of National Disability foot. Join us as we discuss free tax preparation Institute. “This free webinar series offers resources and credits like the Earned Income people living with MS a unique opportunity Tax Credit (EITC) that can help you keep more to learn more about their money and available of what you earn, the importance of assessing options to help them make more informed past and future financial goals, and changes choices about their financial futures.” in the Affordable Care Act (ACA) that could affect you in 2015. Expert speakers will identify The webinars are made available free of charge favorable tax provisions, discuss why using with support from Acorda Therapeutics tax time is a good time of year for a financial (Nasdaq: ACOR). Registration is required. review, and identify ways to utilize all available Please visit www.realeconomicimpact.org/ resources to improve your financial well- FinancialWellness for more information and being for a prosperous 2015. Please visit www. to register for any of the remaining webinars in realeconomicimpact.org/FinancialWellness the series. n to register. 24 MS connection: FALL 2014

ADVOCACY New Jersey The New Jersey General Assembly and State Senate have several session days in the fall and LOCAL UPDATES our activists are looking forward to going to Trenton and meeting with Legislators to raise State awareness about MS. We will be continuing to develop our relationships with state agencies Delaware to raise awareness about our community’s The status at the end of the fiscal year regarding needs. legislation that the Delaware Chapter has PENNSYLVANIA been tracking is as follows: Earlier this year the Society submitted ■■ HB 208 related to change of address at comment to Pennsylvania’s Secretary of Public DMV was signed into law on May 28, 2014. Welfare, Beverly Mackereth, in response to This legislation mandates that a change of Governor Corbett’s Healthy PA plan. We were address made at DMV will automatically particularly concerned about the proposal to update the voter registration record. end the Medical Assistance for Workers with ■■ HB 191 related to absentee ballots – out of Disabilities (MAWD) program on January committee 4/9/14 1, 2015. MAWD allows Pennsylvanians with ■■ HB 196 related to housing discrimination disabilities to continue to work and pay a – assigned to Housing and Community small premium for health insurance through Affairs Committee 6/19/14 the state. In July, the Governor announced ■■ SB 185 related to employment that he has reconsidered and will not be discrimination – passed the House 6/30/14 terminating MAWD. ■■ HB 245 related to restroom access in retail establishments – passed the Senate 7/1/14 The General Assembly is back in session in ■■ HB 295 related to destruction of records – September and we will be in Harrisburg passed the House 6/24/14 advocating for affordable health coverage ■■ HB 370 related to people first language – for all Pennsylvanians and spreading MS stricken 6/24/14 awareness. ■■ SS2 for SB 118 related to biosimilar products – passed by the Senate 5/14/14 Federal The General Assembly will be back in session SUMMER ACTIVISM in January and we will be advocating for Every year, National MS Society staff and access to health care, accessible transportation volunteer activists meet with their legislators and improved accessible public parking. while they are home for August recess to discuss nationalmssociety.org | 1-800-FIGHT-MS 25 issues that are important to those affected Local family makes mark in DC by MS. This year activists from Delaware, New Jersey and Pennsylvania met with 20 members of Congress in their district offices. They discussed MS research funding, complex rehabilitation technology and the MS Caucus. For months our activists have pushed for increased funding for the MS Congressionally Directed Medical Research Fund (CDMRP). In June, the U.S. House of Representatives agreed to an amendment that would double this funding for Fiscal Year 2015. This amendment increased funding from $5 million to $10 million — the largest amount to date! This could have not been possible without the tireless efforts of MS activists. The U.S. Senate Appropriations Committee passed a Defense funding bill with an increase in overall CDMRP funding by 5 percent instead of allocating $10 million for MS CDMRP. The next step in this process is a full Senate vote, then for the House and Senate to reconcile differences so a final bill can be sent to the President. We will continue to advocate for the House position designating $10 million for MS CDMRP. n Rick and Patty Taylor, of Cherry Hill, NJ on ine

l PA: msactivepa.wordpress.com September 17, before Patty spoke to a packed room of legislators at the annual briefing facebook.com/MSPACAN held by the MS Society to educate lawmakers

ion on ion ss @MScanPA on what is being done to help treat children NJ: msactivenj.wordpress.com living with MS. The Taylor’s son, Sean, was facebook.com/MSNJCAN diagnosed with MS at the age of 10. @NMSSNJCAN oin the d i sc u the j oin 26 MS connection: FALL 2014

(blindness, numbness, dizziness, severe muscle spasms, intractable fatigue), I Face of MS: finally knew what was wrong and could begin treatment to slow or lessen the severity of the attacks. (For more about Joan Wheeler Joan’s long road to diagnosis, read her story Joan Wheeler at http://shortinthecord.blogspot.com/). is the team What are some of the ways your life captain of MS has changed since being diagnosed Walk Team, with MS? Wheeler’s The overwhelming fatigue has caused a lot Wobblers. of changes. I am no longer able to tolerate Joan has a room full of people, big department participated stores, parties, or large family gatherings in MS Walk since 1997 and has over because the noise and stimulation cause physical reactions and increase fatigue. I 40 members on her team. Joan has now prefer small groups, slow-paced events been very actively engaged with the and more intimate gatherings. I think that Delaware Chapter over the years and has given me the opportunity to deepen is also a member of the Government relationships. Relations Committee. What does it mean to you to have been diagnosed with MS? When were you first diagnosed I have been given an opportunity to with MS? connect at a different level to others with Tentatively in 1995, positively in 1999. chronic illnesses. I can help others newly diagnosed and their families to understand How did you react when the what is going on. neurologist told you? Has living with MS taught you I was relieved. I know that sounds strange, anything about yourself? but after 13 years of various unexplainable My MS symptoms are invisible (fatigue, attacks of debilitating physical problems cognitive problems), and I don’t use a nationalmssociety.org | 1-800-FIGHT-MS 27 wheelchair and rarely walk with a cane. Why is being involved in Walk MS so People tend to dismiss me as faking or scamming. I have learned to believe in important to you? myself and ignore nasty comments or Between debilitating fatigue and cognitive glares from people who see me using a problems, I tend to forgo parties or social handicapped parking place. I know the group outings. It’s easy to feel isolated. truth of my situation, and have learned to Participating in the MS Walks motivates surround myself with supportive people me to connect with others and reach out who need no explanations, and avoid to the community while doing something situations that drain me. fun, and create lasting relationships in the process. n

GADGET CORNER Lock Lace shoe fastening system Best-selling author A.J. Jacobs hasn’t tied his shoes in over a year after discovering the Lock Lace system. These locking laces can save people living with MS a great deal of hassle while ensuring that their shoes are tightened properly. While they were originally designed for triathletes and other serious athletes, more people are taking advantage of the Lock Lace system. Plus, they come in MS Society orange! You can find Lock Laces at Amazon and other online retailers. Free Matter for the Blind or Handicapped

30 South 17th Street, Suite 800 Philadelphia, PA 19103 ADDRESS SERVICE REQUESTED

1-800-FIGHT-MS n nationalMSsociety.org

As 2014 draws to a close, please consider making a year-end donation to the National MS Society. Not only will your donation be tax deductible, but it will also help us fund research and provide essential services to the thousands of local families living with MS. To make a donation, call 1-800-FIGHT-MS or visit NationalMSSociety.org and click on “Donate”.