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 Philadelphia Flyers, he played in two all-star games and was the captain of the Atlanta Flames. 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 THIS ISSUE
National Caregivers Month
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10 14
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Advancing Myelin Research
The Gathering Table
Face of MS: Joan Wheeler
THE ALTERNATIVE WORK ARRANGEMENT MAZE
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MS connection: FALL 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 Interim President: Craig Robertson
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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
Pedaling for progress Tami caesar, president, Greater Delaware Valley Chapter
Every September, the National MS Society hosts two of the best Bike MS events in the country right here in our area. For decades, Bike to the Bay and City to Shore have been generating funds and bringing new people to the MS movement. This September, the two rides attracted an amazing 8,000 cyclists and generated nearly $7 million.
And that’s only part of the Bike MS story. Our two local rides are part of a vast national network of more than 100 rides that have raised $1 billion since the first ride was launched in Minnesota in 1980 – and in excess of $80 million in 2014 alone.
Craig Robertson, Executive Vice president, East Region
So when we consider all the progress that has been made in MS research, treatment and care over the years, we should not overlook the importance of the Bike MS fundraising campaign as one of the most successful and impactful fundraising campaigns in history. Part of every single
dollar raised over the past 35 years has helped people diagnosed with MS overcome their daily challenges while another portion has furthered research into stopping MS progression, restoring nerve function and ending MS forever. This past month we received news that the FDA approved Plegridy, making it the 11th disease modifying treatment for MS. On that day of the very first Bike MS event, there were no treatments for people living with MS, nor were there many direct services available to help people affected by the disease. The progress the MS community has experienced in treatment options as well as community resources can be directly attributed to the hard work of our cyclists and volunteers, some of whom have been with us from the very beginning. On behalf of the thousands of people who have been helped by your commitment and generous spirit, we thank all the cyclists, committee members and volunteers who have made this one of our most successful Bike MS campaigns ever. And we look forward to working with you over the next 12 months to make Bike MS 2015 even better. Sincerely, Craig Robertson, Tami Caesar, President Executive Vice Greater Delaware President, East Region Valley Chapter
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News BRIEFS MS TRIAL ALERT: TRIAL OF VITAMIN D SUPPLEMENTATION RECRUITING PEOPLE WITH RELAPSINGREMITTING MS- NOW RECRUITING IN PHILADELPHIA Investigators at several centers nationwide are recruiting 172 people with relapsing-remitting MS to compare the effectiveness of the current recommended amount of vitamin D supplementation versus high dose vitamin D supplementation at reducing MS disease activity, when added to standard therapy with glatiramer acetate (Copaxone®, Teva Pharmaceutical Industries). The principal investigator is Ellen Mowry, MD, MCR (Johns Hopkins University,
MS connection: FALL 2014
Baltimore) and the study is funded by a research grant from the National MS Society, with partial support from the Society’s Greater Delaware Valley Chapter.
GLOBAL EFFORT TO END PROGRESSIVE MS GETS $30 MILLION IN RESEARCH FUNDING The International Progressive MS Alliance has awarded its first round of 22 research grants to investigators in 9 countries, with the goal of removing barriers to developing treatments for progressive MS. The Alliance is a worldwide collaborative focused on finding solutions to progressive forms of multiple sclerosis that have so far eluded the scientific community. “By bringing attention to progressive MS, convening academic and industry leaders, and offering a new source of grant funding to researchers around the world, the Alliance is positioning itself to
accelerate results with the most impact and to change the lives of people living with progressive MS,” commented Dr. Alan Thompson, Chair of the Alliance’s Scientific Steering Committee and Dean of University College London Faculty of Brain Sciences.
SALT INTAKE MAY HAVE AN IMPACT ON MS ACTIVITY A recent study, which followed a cohort of 70 relapsing-remitting patients with MS, showed that patients with moderate to high sodium (salt) intake also have increased disease activity (more clinical relapses and more lesions on MRIs). The study was conducted by Dr. Mauricio Farez, a lead researcher at the Raul Carrea Institute for Neurological Research in Buenos Aires. It was published in the Journal of Neurology, Neurosurgery and Psychiatry.
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SLEEP DISORDERS OFTEN UNDIAGNOSED IN PEOPLE LIVING WITH MS In a recent study, researchers at UC Davis have found that undiagnosed sleep disorders may be responsible for the fatigue many people with MS experience. The study was conducted in over 2,300 individuals with MS and found that more than 70 percent of participants screened positive for one or more sleep disorders. “Sleep disorder frequency, sleep patterns and complaints of excessive daytime sleepiness suggest that sleep problems may be a hidden epidemic in the MS population, separate from MS fatigue,” said Steven Brass, the associate clinical professor and director of the Neurology Sleep Clinical Program and co-medical director of the UC Davis Sleep Medicine Laboratory. Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people. It can
significantly interfere with a person’s ability to function at home and work, and is one of the primary causes of early departure from the workforce. Fatigue may be the most prominent symptom in a person who otherwise has minimal activity limitations. The cause of MS fatigue is currently unknown.
DOES DIET AFFECT MS? In a recent study on a group of 185,000 women, researchers found that there was no relationship between eating a highquality, healthy diet and a reduced risk of developing MS. “We did not find any evidence that overall dietary quality is associated with the risks of multiple sclerosis,” Dalia Rotstein, MD, from Brigham and Women’s Hospital, Boston, Massachusetts, concluded. “However further research is required to determine the possible role of dietary quality in the early years and in individual dietary elements.”
05 However, Dr. Rotstein did note that obesity in adolescence has shown to have an increased risk for developing MS. “Our study was conducted purely in adults, with a youngest age of 25,” said Dr. Rotstein. “All we can say from our results is that there does not appear to be a direct relationship between diet quality and risk of developing MS as an adult. We cannot say anything about eating habits in adolescence and risk of MS from these data. It is possible that the adolescent years are a critical window, but our study doesn’t answer that question.” n
Visit us online at nationalMSsociety.org/ research to stay on top of the latest in MS research.
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NOVEMBER IS NATIONAL CAREGIVERs MONTH November is National Caregivers Month – a time to acknowledge friends, family and neighbors who provide care to others. According to the Family Caregiver Alliance, a caregiver refers to “anyone who provides assistance to someone else who is, in some degree, incapacitated and needs help: a husband who has suffered a stroke; a wife with Parkinson’s disease; a mother-in-law with cancer; a grandfather with Alzheimer’s disease…” Caregivers often provide a range of services, from emotional and spiritual support to assistance with financial matters, transportation and management of health care. Caregivers provide an estimated $450 billion worth of uncompensated care to loved ones annually. In addition, according to the Family Caregiver Alliance, unpaid family caregivers will likely continue to be the largest source of long-term care services in the U.S. Given the statistics on the increase of the older population and rates of illness among older adults, a high num-
MS connection: FALL 2014
ber of people in the U.S. will likely take on caregiver responsibilities and experience a range of rep e rc u s sion s related to the time, activities and money that they must allot to caregiving.
Show your caregivers some appreciation
Who are Caregivers in the U.S.? The following statistics offer more information on caregivers and reveal trends regarding the characteristics of caregivers in the U.S.: ■■ 65.7
million caregivers make up 29 percent of the U.S. adult population providing care to someone who is ill, disabled or aged.
■■ More
women than men are caregivers. An estimated 66 percent are female. One-third (34%) takes care of two or more people, and the average age of a female caregiver is 48.
■■ Many
caregivers of older people are themselves older adults. Of those caring for a person age 65 plus, the average age of caregivers is 63 years with one-third of these caregivers in fair to poor health.
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The Administration on Aging website provided these statistics. For additional information please visit their website at: www. aoa.gov. For resources specifically for caregivers there are a number of organizations that may be helpful: National Alliance for Caregiving, Family Caregiver Alliance, Family Caregivers Network, and A ARP to name a few. In Delaware, Easter Seals provides 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.nationalMSsociety.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 commitment and care? Send us an essay about why your caregiver is exceptional and you could win a weekend getaway for your caregiver and a guest to Rehoboth Beach! This contest is open to all clients in the delaware chapter. For more information, call 302-655-5610.
HONORING RICHARD VAGUE,
MANAGING PARTNER, GABRIEL INVESTMENTS AND CHAIRMAN, THE GOVERNOR’S WOODS FOUNDATION
For more information, visit nationalMSsociety.org/pae.
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Cover Story Continued “We were stunned. A few weeks later my wife and I stood right beside Christa when the diagnosis was confirmed as MS. She was scared and so were we but I could also see hope and optimism in Christa’s eyes,” Bill recalls. “I knew our daughter was going to attack the MS as aggressively as the MS has tried to attack her.”
The upcoming annual meetings in Cherry Hill and Newark are your opportunity to hear about Bill’s life before and after hockey, as well as learn about how his family is taking a head on approach to overcoming MS. n
FEATURING: • Featuring a research update with Dr. Jason Silversteen, Director of the MS Center at Christiana Care Hospital; Clinical Assistant Professor of Neurology, Drexel University College of Medicine; Chair, Clinical Advisory Committee, National MS Society, Delaware Chapter • Keynote presentation by Bill Clement, twotime Stanley Cup champion with the Broad Street Bullies and NBC Sports broadcaster • Volunteer, service and fundraising awards • Great food and a chance to connect with others in the MS community and to learn about the latest developments in the world of MS research
FEATURING: • Featuring a research update with Dr. Jeff Bulte, Professor of Radiology and the Director of the Cellular Imaging Section at Johns Hopkins University and the lead investigator of an MS Society funded nervous system repair study • Keynote presentation by Bill Clement, twotime Stanley Cup champion with the Broad Street Bullies and NBC Sports broadcaster • Resource fair featuring exhibitors from throughout the area • Volunteer and fundraising awards • Great food and a great chance to connect with the MS community
December 6, 2014 Embassy Suites Hotel 654 South College Avenue, Newark, DE 19713 To register, visit www.nationalmssociety.org/DED in November.
December 13, 2014 CrownE Plaza Cherry Hill 2349 W. Marlton Pike, Cherry Hill, NJ 08002 To register, visit www.nationalMSSociety.org/pae or call 1-800-FIGHT-MS (option 1).
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RESEARCH
Advancing Myelin research By Claude Schofield, PhD
If we are going to repair the myelin sheaths that protect nerve connections and which are damaged in multiple sclerosis, we have to know everything possible about how myelin is normally made in healthy people. That means studying the cells that make myelin, the genes that instruct them and the molecules with which they interact. This requires the whole scientific community working together – and that’s what happens at the Myelin Gordon Research Conference in Ventura, California, each March. The goal of the conference is to bring together leading experts in the myelin field from around the world. Scientists and clinicians from academia and the industry and nonprofit arenas gather to share and coordinate their research efforts. I like the conference’s open spirit, which leads to important collaborations on areas of research where there are unmet needs. Such a wide spectrum of collaboration is absolutely necessary if we are to move research forward faster and find solutions that will change the lives of everyone with MS.
Ahead of the game Very promising research was presented at the conference on what’s called “high-throughput screening,” which allows researchers to examine thousands of drugs at once. This is
a key technology that can speed drug discovery exponentially and several groups are now working on screening FDA-approved therapies 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 of the game since these therapies are already on the market for treating different diseases.
Welcoming young scientists Another thing I like about the Gordon Conference is how it welcomes young scientists. A symposium just before the main conference features talks by researchers in the beginning stages of their career, providing an opportunity for them to present their work and to make important connections with other young scientists. This year, the symposium was chaired by Brad Zuchero, PhD, of Stanford University, who just received a Career Transition Fellowship Award from the National MS Society to work in the lab of neurobiologist Ben Barres, PhD. Zuchero is using new tools to study the biology behind how myelin wraps around nerve fibers. He hopes to discover new clues for repairing myelin which may ultimately translate into ideas for therapies for people with MS. To learn more about myelin repair, hear Dr. Jeff Bulte of Johns Hopkins live on Dec. 13 in Cherry Hill. See page 8 for more details. n Dr. Claude Schofield is director of Discovery Research at the National MS Society. Originally published on www.MSconnection. org/blog
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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?”
NEWLY DIAGNOSED
The gathering Table By Ronda Giangreco
On July 26th, 2008, I was a 53-year-old woman who considered herself very fortunate. I was just back from my latest adventure at a cooking school in Italy. My husband, Michael, and I had spent the day wine tasting in Napa with friends. Life was good. One day later I was a disabled woman. Learning that your wife has been diagnosed with sudden onset multiple sclerosis would be difficult for any man to accept, but for my husband it was a particularly cruel twist of fate.
My answer: to the kitchen! An avowed foodie, I always loved to cook. My kitchen is my sanctuary, 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 treatment plan, but why not attempt to triumph over MS with steaming plates of pasta? However, when I made the audacious vow to 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 my mind. One would have to be a bit certifiable to think about cooking 52 dinners while living with a neurological condition, but a discussion about parties would be immensely more entertaining than one about motorized wheelchairs. I would stare down MS with spatula in hand. We began by inviting every friend we knew. The first six who accepted the invitation would join us at our home in Sonoma, Calif., for an evening of laughter, good food and plenty of great wine. Throughout the year, we added people we had met at events, through friends, and even a woman I had struck up a conversation with in a grocery store aisle. Eventually, more than 130 people received our email invitation each week.
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As we sat around our big, square dining table — referred to in the furniture industry as a “gathering table” — we heard stories that made us weak with laughter and others that brought tears to our eyes. We were given fresh insights into the people we thought we knew well, while we also formed dozens of new friendships.
I learned from the stories of others that the challenges we all face help form the core of who we are, giving us an insight into the strength within. There was the sweet, older neighbor who joined us for dinner one night and informed us that he had been Bozo the Clown in his younger days. The entire table was awestruck when he burst into character. Then we discovered one of our friends had helped make The Allman Brothers rock band famous. Another had been on a plane with the terrorists a week before 9/11. We had staunch conservatives sitting across from diehard liberals. We hosted Christian fundamentalists at the same table as a lesbian couple. And everyone learned there is more uniting than separating us. 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
11 fear of the future. I learned from the stories of others that the challenges we all face help form the core of who we are, giving us an insight into the strength within. The icing on the cake … I was still on my feet. MS didn’t win. I did. I could never stomach my story being touted 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 bed looking up at grim faces knows that there are some hurdles you cannot clear just by employing a perky disposition. The last thing I want to do is add to anyone’s burden by suggesting otherwise. My tale is not about bucking up. 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 therapy, and I discovered that even though fate may shove you in a direction you don’t want to go, you can still find a means of traveling the road on your terms. n Ronda Giangreco has written a book about her yearlong adventure called The Gathering Table — Defying Multiple Sclerosis with a Year of Pasta, Wine & Friends available at www.amazon. com. Learn more at www. thegatheringtable.net.
12 Living with MS
MS Symptoms and winter weather By Julie Stachowiak, Phd
Most of us with multiple sclerosis are heat intolerant to the point of being unable to function outside during peak summer temperatures. But when I asked people with MS on my blog at www.ms.about.com what their MS temperature “limits” were, I was surprised when several people said that the cold wasn’t so great for them, either. Many people complained of increased spasticity in cold weather. Readers mentioned that their limbs “felt like wood” or that their joints ached during lower temperatures. A couple of people also mentioned that the MS “hug” could be intolerable in the cold. (The MS hug is the gripping feeling around the torso that is caused by a lesion in the spinal cord that results in spasms in the tiny muscles between the ribs.) I also know that some people with MS tend to 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.
MS connection: FALL 2014
Perhaps we feel our symptoms more acutely when our vitamin D reserves are at their winter lows, although this hasn’t been confirmed yet by scientific studies. Here are a few tips to help you enjoy the colder months if you are bothered by frigid temperatures. ■■ Soak
up sunshine during the warmest part of a sunny winter day to help your body produce vitamin D.
■■ Don’t
overdo the heat. When I get cold, I tend to take really hot showers. Recently, I got dangerously dizzy during one. Remember, extreme heat is not our friend, either.
■■ Warm
yourself from the inside. Drink a hot beverage to take the chill off.
Like many other situations that we must navigate through with MS, a little strategic planning of winter activities can help you have some control over symptoms. Put some thought into what you enjoy doing in the winter, take a couple more precautions and get the most out of the cold months. n Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto. Originally published on www.blog.national MSsociety.org.
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Ask the Employment Expert Christina Forster is the employment services manager for Pennsylvania and Delaware.
Can you work for multiple employers each for only limited hours per month and not risk disability status?
Potentially. A person can work while receiving Social Security Disability Insurance (SSDI) benefits but you want to stay under the substantial gainful activity (SGA) level 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
13 close to full time hours, the SSA may take notice and have reason to believe that you can work full time. If you are receiving SSDI or Supplemental Security Income (SSI) benefits, the SSA will review your medical condition from time to time to make sure you are still disabled. For the most part, if your health hasn’t changed, or your disability still keeps you from working, you will continue to receive your benefits. The frequency of the review depends on the nature and severity of your medical condition and whether it is expected to improve. The review process is designed to give you every opportunity to show that you are still disabled and to assure your benefits are not stopped incorrectly. If they audit you and have questions about whether you are still disabled, the SSDI will have to re-determine if you are still considered disabled, and if so, benefits continue; however, if not, your benefits would stop. You would not have to pay back any benefits you were collecting during this time. n
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NAVIGATING THE ALTERNATIVE WORK ARRANGEMENT MAZE
requested and negotiated some flexibility in where the work is performed. There are several articles that discuss telework as a reasonable accommodation which provide suggestions on how to make the request to your employer:
WORK FROM HOME AND SELF-EMPLOYMENT
For even more accommodation ideas, contact the National MS Society at 1-800-344-4867 or the Job Accommodation Network (JAN) at 1-800-526-7234 or online at www.askjan.org.
by Steven W. Nissen, M.S., CRC
Telework, telecommuting, work-from-home, self-employment. What do all these work arrangements mean and what resources are available to help determine what might work for you? We often hear from people with MS that they would prefer to work from home. But this can mean different things based on the individual, the situation, and the employer. Some people may be able to work from home for their employer as an accommodation. According to the Americans with Disabilities Act (ADA), an accommodation is “any change in the work environment or in the way things are customarily done that enables an individual with a disability to enjoy equal employment opportunities.” In some situations, an accommodation could be having the ability to work from home part of the time, known at telecommuting or telework. The employee might work a certain number of hours or days per week from home. That employee still works for that employer, but has
Work At Home/Telework as a Reasonable Accommodation ■■ www.worksupport.com/resources/
viewContent.cfm/477 ■■ www.eeoc.gov/facts/telework.html
Some individuals would prefer to find positions that are advertised to be done completely from home. Be careful when applying for these types of jobs as there are a lot of scams out there. Some other things to investigate include determining if you are responsible for filing your own taxes (1099 employee), what sort of technology and Internet service is needed, and payment schedule. There are online resources that post work-fromhome job leads. Visit the following: ■■ Rat
Race Rebellion: www.ratracerebellion.com
■■ Flexjobs:
www.flexjobs.com
■■ Pearl
Interactive Network: www.pearlinter.org
■■ My
Employment Options: www.myemploymentoptions.com (specifically for individuals receiving Social Security benefits)
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Self-employment is another option for some people, as the thought of being your own boss can be appealing. It is important to realize that managing a business is not for everyone. Oftentimes running your own business is more than a full-time job if you are the person doing everything – providing the services and products, submitting the billing, doing the marketing and follow-up with customers. There are also different types of self-employment arrangements out there, such as franchise, independent contractor, and limited liability company (LLC). If you are considering self-employment, it is important to do a self-assessment to make sure it is right for you. Explore funding opportunities and support services to determine if you can make your dream of being a business-owner a reality. Some resources include the following: ■■ Job
Accommodation Network’s (JAN) Entrepreneurship information: askjan.org/entre or 1-800-526-7234
■■ Your
state Vocational Rehabilitation (VR) Agency: askjan.org/cgi-win/TypeQuery. exe?902
■■ The
Abilities Fund: www.abilitiesfund.org
There are many options available to you and it’s important to plan ahead and get educated. The National MS Society can help by referring you to additional employment resources. Visit www.nationalMSsociety.org/employment and click on the link for Career Options. There are extensive resource lists pertaining to work-at-home as well as self-employment. An MS Navigator can also talk through employment considerations like disclosure and accommodations. Call the National MS Society at 1-800-344-4867. n Steven W. Nissen, M.S., CRC is Senior Director, Employment & Community Programs for the National Capital Chapter.
■■ 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 Money Matters
FINANCIAL PLANNING WITH MS Living with multiple sclerosis (MS) can be expensive. An individual with MS may spend close to $70,000 a year on medical costs alone. Moreover, many people find it difficult to continue working, especially if the disease progresses. People living with MS face some extraordinary challenges, and it’s not always easy to deal with them alone. That’s where Evan Marcus comes in. He is one of the three MS Navigators at the Greater Delaware Valley Chapter. Evan is the important link between people facing financial issues and those who can help. When people call Evan, they are often dealing with credit and budget issues, medical costs, and even homes that are in foreclosure. In the face of those issues, Evan always stays positive. “What I enjoy most is spending time on the phone with clients,” Evan says. “I’m really fortunate to get to know a lot of the people
MS connection: FALL 2014
we serve, and I just enjoy helping in any way I can.” After listening to callers’ concerns, Evan will make a referral to one of the Society’s partners. Depending on the need, Evan can connect clients to care managers for an in-person meeting to help with financial planning, organizing, and calling insurance companies. Evan can also connect clients to Clarifi, a nonprofit specializing in financial counseling that helps with budgeting, credit, debt management, and buying a house. If a client is in the middle of a foreclosure, many times Clarifi can negotiate on their behalf. For people just diagnosed with MS, Evan has a message: “MS affects the entire family. A lot of times, caregivers aren’t able to work as well. It’s such an expensive disease and developing a plan early on can make a big difference down the line. “ The National MS Society offers an extensive variety of programs, services and resources for people living with MS, including family members, carepartners and other members of the support system. To learn more, visit www. nationalMSsociety.org/financialplanning 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.
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Ways to give
Workplace Giving Looking for a simple and convenient way to join the movement? Participating in the charitable giving campaign sponsored by your employer is an easy way to fund cutting-edge research and provide programs and services to help people affected by MS move their lives forward. Many national and local corporations offer their employees
an opportunity to make a charitable donation through payroll deductions. If your employer partners with Community Health Charities (CHC), look for the National MS Society listing under CHC. If your employer offers an independent campaign, ask your program administrator how to designate your gift to the National MS Society. In a few areas, individuals may support the Society through the United Way. Federal government employees and members of the U.S. Military Forces can support the Society through the Combined Federal Campaign (CFC) by designating their contribution to CFC# 11409. If your employer doesn’t offer a giving program, call us at 1-800-344-4867, option #2, to see if we can help. n
Thank You Volunteers
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Thursday, November 27 PNC Bank Center Wilmington, DE 19801
Registration: 8:00 - 10:15 AM 10K Run: 9:00 AM SHARP! Kiddie Fun Run: 10:00 AM SHARP! 5K Run: 10:30 AM SHARP! 5K Walk: Start 10:35 AM
Register Today!
www.MSRunWalk.org 302.655.5610 option 2
Now celebrating its 36th year, the Thanksgiving Day Run/Walk for MS has become an important holiday tradition for many families from Delaware and the surrounding areas. This fun event includes competitive 5K and 10K runs as well as a non-competitive 5K walk and a kiddie fun run. Each event is led by Santa and Mrs. Claus, and the 5K and 10K events take participants throughout Wilmington and include portions of the scenic Brandywine Park. After the events, participants enjoy lots of delicious food and beverages and a chance to take photos with Santa and Mrs. Claus as well as our giant Turkey!
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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-todate listing of available items and instructions on how to place your listing.
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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!
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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
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6. MSquerade 7. Bike MS: Bike to the Bay 8. Muckfest MS 9. Muckfest MS
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10. P reakness at the Piazza 11. Crankin’ for a Cure 12. Walk MS: Tyler State Park 13. WAMS 14. C hallenge Walk MS 15. Z umbathon for MS 16. B ike MS: City to Shore
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17. Bike MS: City to Shore
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Upcoming Programs Below is a list of some of our upcoming offerings for people living with MS. Call 1-800-Fight-MS or visit your chapter’s website for more information or to register.
MS Family Picnic October 18 • Dover, DE Back by popular demand! Join us for the Annual MS Family Picnic on October 18 at Silver Lake Park in Dover, DE. Come out and enjoy food, games, prizes and meet our staff and other families. There is no cost to attend but we do ask that you register by calling the Delaware office at 302-655-5610 or 1-800 FIGHT MS. Due to space and funding restrictions, we must limit the number per family to a maximum of six per household. Limited transportation may be available on an as needed basis.
EASTER SEALS CAMP FAIRLEE RETREAT October 24 - 26 • Chestertown, MD Easter Seals Camp Fairlee is available to all members of the National MS Society again this fall. The weekend of October 24 - 26 has been set aside for us. If you are interested in participating, please contact the chapter at 302-655-5610 or 1-800 FIGHT MS to register.
MS connection: FALL 2014
Cape May County Disabilities Awareness Day November 15 • Avalon, NJ Please join us and over 50 other exhibitors for a day of information, food, music and fun for people with disabilities and agencies and organizations that serve the citizens of Cape May County. Admission is free and refreshments will be provided from 10 a.m. to 1 p.m. at the Avalon Elementary School at. Make sure to stop by the National MS Society table to learn more about how we can assist you. Contact Pat Thieringer at 215-2711500 or pat.thieringer@nmss.org for more information.
Credit: Accessing it, Understanding it, Using it Wisely November 19 • 3:00 - 4:30 P.M. National Disability Institute WEBINAR Credit affects many aspects of our lives that we may not even realize. Establishing and maintaining good credit will help in reaching goals (short-term, intermediate, and longterm). Maintaining credit involves many aspects of our financial lives including, but not limited to, setting up a bill paying system to ensure that obligations are met on time, as well as prioritizing debts with a plan of reduction or outright elimination. We will also explore the safest ways to access your credit report, check the accuracy of information, and understand your credit score and standing. Please visit www.realeconomicimpact.org/ FinancialWellness to register.
nationalmssociety.org | 1-800-FIGHT-MS
The Nutcracker December 7 • Dover, DE The holidays are just around the corner and in December The Ballet Theatre of Dover will perform the Nutcracker at the Schwartz Center for the Arts in Dover, DE. Through the Arthur Stapler Memorial Adventure Fund, the Delaware Chapter will provide tickets to a performance on Sunday, December 7 at 2 p.m. If interested in attending, call the office at 302-655-5610 or 1-800-FIGHT-MS. Tickets are limited so get your seat early!
Treatment Update and resource fair January 10 • Wyomissing, PA Call 1-800-Fight-MS or visit calendarMS. org for more information or to register.
New Year, New Financially Secure You January 21 • 3:00 - 4:30 P.M. National Disability Institute WEBINAR Start the New Year off on the right financial foot. Join us as we discuss free tax preparation resources and credits like the Earned Income Tax Credit (EITC) that can help you keep more of what you earn, the importance of assessing past and future financial goals, and changes in the Affordable Care Act (ACA) that could affect you in 2015. Expert speakers will identify favorable tax provisions, discuss why using tax time is a good time of year for a financial review, and identify ways to utilize all available resources to improve your financial wellbeing for a prosperous 2015. Please visit www. realeconomicimpact.org/FinancialWellness to register.
23 Financial Webinar Series Launched On September 17, 2014, National Disability Institute launched the fourth annual Financial Wellness Webinar Series. This series of webinars is designed to help people living with MS plan for their financial futures, and will be held on the third Wednesday of each month through January 2015 (with the exception of December). Each webinar consists of a onehour expert presentation followed by a halfhour set aside for questions. Registrants can listen, watch and participate from the comfort of their own home. Guest speakers who live with MS will also offer a peer perspective during each webinar. Learning financial fundamentals is one of the first and most important steps in building lifelong financial wellness,” said Michael Morris, executive director of National Disability Institute. “This free webinar series offers people living with MS a unique opportunity to learn more about their money and available options to help them make more informed choices about their financial futures.” The webinars are made available free of charge with support from Acorda Therapeutics (Nasdaq: ACOR). Registration is required. Please visit www.realeconomicimpact.org/ FinancialWellness for more information and to register for any of the remaining webinars in the series. n
24 ADVOCACY
LOCAL UPDATES State Delaware The status at the end of the fiscal year regarding legislation that the Delaware Chapter has been tracking is as follows: ■■ HB
208 related to change of address at DMV was signed into law on May 28, 2014. This legislation mandates that a change of address made at DMV will automatically update the voter registration record. ■■ HB 191 related to absentee ballots – out of committee 4/9/14 ■■ HB 196 related to housing discrimination – assigned to Housing and Community Affairs Committee 6/19/14 ■■ SB 185 related to employment discrimination – passed the House 6/30/14 ■■ HB 245 related to restroom access in retail establishments – passed the Senate 7/1/14 ■■ HB 295 related to destruction of records – passed the House 6/24/14 ■■ HB 370 related to people first language – stricken 6/24/14 ■■ SS2 for SB 118 related to biosimilar products – passed by the Senate 5/14/14 The General Assembly will be back in session in January and we will be advocating for access to health care, accessible transportation and improved accessible public parking.
MS connection: FALL 2014
New Jersey The New Jersey General Assembly and State Senate have several session days in the fall and our activists are looking forward to going to Trenton and meeting with Legislators to raise awareness about MS. We will be continuing to develop our relationships with state agencies to raise awareness about our community’s needs.
PENNSYLVANIA Earlier this year the Society submitted comment to Pennsylvania’s Secretary of Public Welfare, Beverly Mackereth, in response to Governor Corbett’s Healthy PA plan. We were particularly concerned about the proposal to end the Medical Assistance for Workers with Disabilities (MAWD) program on January 1, 2015. MAWD allows Pennsylvanians with disabilities to continue to work and pay a small premium for health insurance through the state. In July, the Governor announced that he has reconsidered and will not be terminating MAWD. The General Assembly is back in session in September and we will be in Harrisburg advocating for affordable health coverage for all Pennsylvanians and spreading MS awareness.
Federal SUMMER ACTIVISM Every year, National MS Society staff and volunteer activists meet with their legislators while they are home for August recess to discuss
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nationalmssociety.org | 1-800-FIGHT-MS
issues that are important to those affected 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.
Local family makes mark in DC
join the discussion online
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
PA:
msactivepa.wordpress.com
facebook.com/MSPACAN
@MScanPA
NJ:
msactivenj.wordpress.com
facebook.com/MSNJCAN
@NMSSNJCAN
Rick and Patty Taylor, of Cherry Hill, NJ on September 17, before Patty spoke to a packed room of legislators at the annual briefing held by the MS Society to educate lawmakers on what is being done to help treat children living with MS. The Taylor’s son, Sean, was diagnosed with MS at the age of 10.
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Face of MS: Joan Wheeler
Joan Wheeler is the team captain of MS Walk Team, Wheeler’s Wobblers. Joan has participated in MS Walk since 1997 and has over 40 members on her team. Joan has been very actively engaged with the Delaware Chapter over the years and is also a member of the Government Relations Committee. When were you first diagnosed with MS?
Tentatively in 1995, positively in 1999.
How did you react when the neurologist told you? I was relieved. I know that sounds strange, but after 13 years of various unexplainable attacks of debilitating physical problems
MS connection: FALL 2014
(blindness, numbness, dizziness, severe muscle spasms, intractable fatigue), I finally knew what was wrong and could begin treatment to slow or lessen the severity of the attacks. (For more about Joan’s long road to diagnosis, read her story at http://shortinthecord.blogspot.com/).
What are some of the ways your life has changed since being diagnosed with MS? The overwhelming fatigue has caused a lot of changes. I am no longer able to tolerate a room full of people, big department stores, parties, or large family gatherings because the noise and stimulation cause physical reactions and increase fatigue. I now prefer small groups, slow-paced events and more intimate gatherings. I think that has given me the opportunity to deepen relationships.
What does it mean to you to have been diagnosed with MS? I have been given an opportunity to connect at a different level to others with chronic illnesses. I can help others newly diagnosed and their families to understand what is going on.
Has living with MS taught you anything about yourself? My MS symptoms are invisible (fatigue, cognitive problems), and I don’t use a
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wheelchair and rarely walk with a cane. People tend to dismiss me as faking or scamming. I have learned to believe in myself and ignore nasty comments or glares from people who see me using a handicapped parking place. I know the truth of my situation, and have learned to surround myself with supportive people who need no explanations, and avoid situations that drain me.
Why is being involved in Walk MS so important to you? Between debilitating fatigue and cognitive problems, I tend to forgo parties or social group outings. It’s easy to feel isolated. Participating in the MS Walks motivates me to connect with others and reach out to the community while doing something 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�.