2014 msconnection issue1d email by Kevin Moffitt

WINTER 2014 Delaware, Southeastern Pennsylvania & South Jersey

MSConnection Newsletter BE INSPIRED. GET CONNECTED.

A WORLD FREE OF MS STARTS HERE

Of all our fundraising events, there is one that stands out. One event that gives people of all ages and abilities the opportunity to join together with family and friends in the anti-MS movement. One day where the entire MS community stands united in our ongoing quest to create a world free of MS.

This is your day. This is your Walk MS.

CONtinued on Page 12

INSIDE 06 THIS ISSUE

Love, marriage and MS

Progress on MS therapies

Working with MS: DOnâ&#x20AC;&#x2122;t do it alone

2013 Annual Conference Winners

Face of MS: Bill CLement

MS connection: WINTER 2014

GREATER DELAWARE VALLEY CHAPTER

DELAWARE CHAPTER

National Multiple Sclerosis Society 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611

National Multiple Sclerosis Society 2 Mill Road, Suite 106 Wilmington, DE 19806 302-655-5610

Chair: Marianne Jackson Vice Chairs: Valli Baldassano, Roger Dennis President: Tami Caesar

Chair: Maria McCabe Vice Chair: Matt Lenzini President: Kate Cowperthwait

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ÂŠ2014 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

MAKING A CASE FOR RESEARCH

Kate Cowperthwait, president Delaware Chapter

Every March, we celebrate our MS Awareness Week as a way to encourage the public to consider the challenges of people living with this unpredictable disease. What often gets lost in all the excitement about turning buildings orange or airing stories about new treatments on TV is the work we do to enlist elected officials and advisors in our movement.

And our efforts with policymakers aren’t just Tami caesar, president focused on areas such as Greater Delaware affordable health care or Valley Chapter ensuring protections for people living with disabilities. Much of our recent energy has been focused on ensuring enough public funds are devoted to medical research. While we are proud of the Society’s role in the strides made in research, the revolutionary changes in MS treatment, such as those outlined on page 8, would not have happened without the funding provided by the National Institutes of Health (NIH). And while we applaud the recent budget deal passed by Congress that increases NIH funding by $1 billion this year, the total allocation is still lower than it was in 2010.

The facts about the NIH and MS speak for themselves: • The NIH is the largest funder of medical research in the entire world for all diseases, including MS; $115 million of its 2012 spending was directed to MS-related research • The NIH helped make significant progress in understanding MS-lesions, analyzing the immune system’s response to stimuli and providing research to develop MS therapies • NIH scientists were among the first to report the value of MRI in detecting early signs of MS before symptoms even develop. MRI technology allows doctors to monitor the disease and treatment Once again this March, Society volunteers and staff members will be lobbying elected officials in Washington to continue their partnership with the Society and other organizations by allocating at least $32 billion for medical research. But our work in this area doesn’t begin and end with the annual MS Public Policy Conference. We all have a role to play in this effort and we encourage everyone affected by MS to raise this issue with your local government representatives – and always remember to mention the essential role advocacy can play in achieving our goals. The fact is that raising awareness about the importance of scientific funding is our best chance at finding the cause of and cure for MS. Sincerely, Kate Cowperthwait, President Delaware Chapter

Tami Caesar, President Greater Delaware Valley Chapter

News BRIEFS Vitamin D May Slow MS Progression

Vitamin D may slow the progression of multiple sclerosis (MS) and also reduce harmful brain activity, a new study suggests. Correcting vitamin D deficiency early in the course of the disease is important, according to the report, published online Jan. 20 in JAMA Neurology. But some experts say it’s too soon to recommend giving vitamin D supplements to people with the central nervous system disorder. “No one knows what the connection between MS and vitamin D is,” said Nicholas LaRocca, vice president for health care delivery and policy research at the National Multiple Sclerosis Society. “What they suspect is that vitamin D has

MS connection: WINTER 2014

some effect on the immune system.” Also, what dose of the vitamin might be appropriate isn’t clear, he said. “We don’t know what a good level would be. There is no scientific consensus on a treatment protocol. We may get to that point eventually,” LaRocca said. However, the lead researcher of the study, Dr. Alberto Ascherio, a professor of epidemiology and nutrition at the Harvard School of Public Health, is convinced that vitamin D -- often called the “sunshine vitamin” -- can be a real benefit to MS patients. “These findings, combined with previous evidence that vitamin D deficiency is a risk factor for MS, and [research on] the immunological effects of vitamin D strongly suggest that maintaining an adequate vitamin D status is important in the treatment of MS,” he said.

FDA Turns Down New MS Drug Sanofi’s Lemtrada has failed to win approval from U.S. regulators, dealing a setback to a drug that was at the heart of the French drugmaker’s $20 billion takeover of biotech firm Genzyme. The U.S. Food & Drug Administration (FDA) rejected Lemtrada for launch in the world’s biggest drug market on the grounds that Genzyme had not shown its benefits outweighed its “serious adverse effects”, Sanofi said on Monday. The FDA also demanded Sanofi carry out further clinical trials using different designs and methods prior to approval, Sanofi said. The company said it strongly disagreed with the decision and planned to appeal. Lemtrada is designed to treat relapsing remitting MS, the most common form of the disease. It was approved for use in Europe and in Canada.

nationalmssociety.org | 1-800-FIGHT-MS

Alcohol Consumption May Reduce MS Risk A new study using data collected in large Swedish studies suggests that people who reported that they drank alcohol were less likely to develop MS. The results conflict with a study published in 2013 that found no association. This study does not shed light on the effects of alcohol on people who already have MS, and further study is necessary to confirm the relationship of alcohol. The study was supported by grants from the Swedish Medical Research Council, the Swedish Council for Working Life and Social Research, and other agencies. Alcohol consumption has been associated with reduced risk for cardiovascular disease, and also those mediated through the immune system such as arthritis and lupus because alcohol may suppress some immune responses, so researchers continue to study its association with MS risk.

In a previous study, researchers at Harvard School of Public Health examined the association between alcohol and caffeine intake and risk of developing MS in two large groups of women and found no connection between either and the development of MS.

Exercise can reduce fatigue in MS People living with MS can reduce fatigue by undertaking short bursts of moderately intense exercise, such as walking or cycling, according to new research. Participating in such activities even for a few minutes boosted their quality of life and reduced their extreme tiredness, patients reported in a trial of 120 people with MS living in England. “It seems illogical to turn to exercise as a way of managing fatigue but the results showed that a pragmatic program based on short bouts of moderate intensity exercise can really

help improve symptoms and quality of life”, said Professor John Saxton, who led the research. For 12 weeks, 60 of the 120 participants undertook five bursts of three minutes of exercises, either in a gym or at home, with two-minutes rests in between. As the trial progressed, they were encouraged to increase the busts to four minutes or take shorter rest breaks. The other 60 received standard care for their condition, which did not include exercise. Those who had done the physical activity had “significantly lower” levels of fatigue than those who had not. They also reported “long-term improvements in emotional wellbeing, social function and overall quality of life”, which lasted for up to nine months, according to the MS Society in the United Kingdom, which funded the study. n

MORE RESEARCH Visit us online at nationalMSsociety.org to stay on top of the latest in MS research.

06 NEWLY DIAGNOSED

Love, Marriage and ms by susanna redmer

I met my husband Tim about four years ago after a friend had dared me to give online dating a try. I talked online with him for a bit, and then decided to meet him in person since we both wanted to get to know each other better. I thought I’d then tell him my usual spiel about multiple sclerosis just so he’d know what he was getting himself into. “You know I have this thing,” I began. “It’s not a big deal, but sometimes I feel too fatigued to do anything. I take an injection, and oh, it’s called MS,” I finished in a hurry. I expected Tim to say something like, “Never mind about you — I want someone to go surfing with me,

MS connection: WINTER 2014

run marathons and do adventure biking.” But I never thought in a million years he would smile and say, “Huh, small world. I have MS, too.”

“you know i have this thing ... it’s not a big deal, but sometimes i feel to0 fatigued to do anything. i take an injection, and oh, it’s called MS.” I remember sitting in stunned silence that the same someone I was interested in was also someone who understood what life was like with MS. Tim knew about the injections, the doctor’s appointments, the fatigue and everything else I experienced daily. I didn’t start dating him because he had MS; I dated him because he was everything I had been looking for. He was intelligent, confident, athletic, a record-setting college runner and kind. After just a few months, we realized that we wanted to spend our lives together. When we said our wedding vows a year later, the phrase “in sickness and in health” had a deeper meaning because sickness could strike at any time due to the unpredictability of MS. And soon after we got married, it did. Within the year, our son, Will, was born. I remember wondering if I could handle the fatigue, the stress of childbirth and coping with a new little baby who could do nothing for himself. I was scared, but my husband said something to me that I’ll never forget. He said, “You’ll always have me at your side.”

Susanna and Tim’s Wedding

nationalmssociety.org | 1-800-FIGHT-MS

After a few months, I saw that friends who had had children around the same time were starting to bounce back, training for half marathons and triathlons, and going back to work. On my side, I was having an MS relapse, on top of the strain of giving birth and being a new mom.

“i worried that my son would miss out on things because i couldn’t do them, and i was upset that i had yet another relapse.” I felt isolated in my daily struggles. I worried that Will would miss out on things because I couldn’t do them, and I was upset that I had yet another relapse. Through it all I had my husband at my side, and still do. I also had a team of doctors who cared about me and helped me to recover.

Since my last relapse, there are some things I can’t do anymore, but I can look at my son and find joy through the way he experiences life. And I also came up with the idea of Café MoMS during my recent relapse. It’s a support group where mothers who have MS and who have children of any age can go to express their concerns, listen to new research and find support in a nurturing environment with people who know what it’s like to walk in your shoes. Most of all, at Café MoMS, mothers find they’re not alone. n Susanna Redmer is a freelance reporter and the author of the young adult historical fiction novel, The Time the Earth Shook. Originally published in the Wisconsin Chapter’s Summer 2012 MS Connection Newsletter.

Don’t go it alone If you’re feeling isolated, reach out. Call an MS Navigator at 1-800-344-4867 to find a support group near you, or call MSFriends at 1-866-673-7436 to talk to a peer with MS. You can learn more about MSFriends and other ways to connect with others like you at www.nationalMS society.org/connectionprograms. Moms with MS can join the “Moms with MS” group at www.MSConnection.org and find resources for families at www.nationalMSsociety.org/FamilyMatters.

The Redmer family

MS connection: WINTER 2014

research

Progress on ms therapies by Megan Weigel, CNP, ARNP-C, MSCN

In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral dimethyl fumarate (brand name Tecfideraâ&#x201E;˘) by the U.S. Food and Drug Administration (FDA) in March, 2013, we now have 10 diseasemodifying therapies to treat relapsing forms of MSâ&#x20AC;&#x201D;and more on the horizon. Tecfidera is the third oral therapy approved to treat MS. A related compound, called Fumaderm (dimethyl fumarate and fumeric acid esters), has been used for decades in Europe to treat psoriasis. Tecfidera is a new and different formulation of dimethyl fumarate developed by Biogen Idec specifically to treat MS. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even protect against damage to the brain and spinal cord. Two large phase III studies (the DEFINE and CONFIRM trials) found that Tecfidera significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. Before starting treatment, the FDA recommends a recent (within six months) blood cell count, repeated annually thereafter.

The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.mscoalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments such as Tecfidera. Here are potential therapies to keep an eye on as we move forward into 2013 and beyond. Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta-1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders.

nationalmssociety.org | 1-800-FIGHT-MS

Laquinimod is a once-daily oral immune modulator that showed in phase III studies to decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsingremitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumabâ&#x20AC;&#x2122;s safety and benefits. Research is also underway on potential treatments for progressive forms of MS and the International Progressive MS Alliance, of which the Society is a member, plans to do all it can to speed the development of those treatments. Current clinical trials include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.

Making choices When we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of newer agents. The sequencing of therapies is

a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations. However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible. To follow progress on potential MS therapies, sign up for MS eNEWS at nationalMSsociety. org/signup, or visit nationalMSsociety.org/ research. Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapterâ&#x20AC;&#x2122;s MSConnection newsletter.

10 Living with ms

Pain: An underappreciated problem in MS Many people living with MS experience pain as a result of the disease. Pain can be acute, chronic or emotional. It can make even everyday activities extremely difficult. However, there are treatment options available. If you are living with MS and are experiencing pain, talk to you doctor to determine the type(s) of pain that you have and how you can address it. The National MS Society estimates that around half of all people living with MS experience clinically significant pain. However, it was only recently that healthcare professionals began to recognize it as a symptom of the disease. Previously overlooked as one of the ‘invisible symptoms’ of MS, pain can be among the most debilitating that people face. Today, doctors are increasingly recognizing it as a symptom that should be treated. There are two main types of pain associated with MS. People living with MS may experience one or both types during the course of the disease.

MS connection: WINTER 2014

• Neuropathic – This can be described as a burning, tingling, shooting or stabbing pain. Examples include trigeminal neuralgia, a stabbing pain in the face that can be confused with dental pain; and Lhermitte’s sign, a brief, stabbing, electric shock-like sensation that runs from the head down the rest of the body. Neuropatic pain is acute and can come on suddenly and go away. • Musculoskeletal – This type of pain is a result of altered bodily mechanics and is related to spasticity. It can be described as muscle cramps, tight and aching joints, and back pain. For example, if you change the way you walk to compensate for another issue you may cause pain in the knees, shoulders and back. Musculoskeletal pain can be chronic and long lasting. Dr. Donald Barone, a South Jersey neurologist who has been treating people with MS for more than 30 years, encourages patients to talk to their doctor about pain. Since there is no test to determine the type of pain someone is experiencing, healthcare professionals rely on the patient to describe their pain. Talking to your doctor will enable them to recommend possible treatments. “There are several treatment options”, says Dr. Barone, “but no two patients are alike. The treatment depends on the type of pain and its cause”.

nationalmssociety.org | 1-800-FIGHT-MS

Treatment options include medical and alternative approaches. There are no medicines approved specifically for MS pain, but several medicines may be helpful in alleviating the symptoms. Alternative approaches include diet and exercise, physical therapy, massage and acupuncture. These can be particularly helpful for musculoskeletal pain. As with any treatment, it is important to discuss any possible risks with your doctor in advance. A more controversial treatment option is medical marijuana, something that is being

11 hotly debated in states across the country, including New Jersey and Pennsylvania. Further examination is needed to determine its effectiveness and safety in treating MS and the National MS Society supports research in this area. Like other treatment options, there are risks involved and you should discuss these with your doctor should this option become available to you. For more information about MS pain, call 1-800-FIGHT-MS. n

MS connection: WINTER 2014

Cover Story Continued

Why We Walk

When you support Walk MS, you provide a helping hand to people living with MS and those who care about them. It’s an experience unlike any other – a day to come together to raise essential funds, celebrate the progress we’ve made and to show the power of our connections. Walk MS is a rallying point, a time and a place for us to help raise critical funds that support cutting edge research, drive change through

advocacy, facilitate professional education and provide programs and services to help people manage the challenges of MS. The funds raised by Walk MS make it possible for researchers to continue their work to find the cause and cure of MS . . . for home modifications that allow someone to stay in their family home as long as possible . . . for caregiver support programs, counseling and much more. Making a difference through Walk MS is simple: to register as a walker or a volunteer, just visit WalkMS.org or call 1-800-FIGHTMS (344-4867).

"In 2011 life changed for my family forever. That was the year my Mom, Sandy, now 52, was diagnosed with MS. That was the year our family became a team in the race to find a cure for Multiple Sclerosis and from that, Team Fight Like A Girl was created. Participating and being a Team Captain for WalkMS gave me a sense of hope and purpose at a time when life seemed so difficult for my family. I am now going into my third year of fundraising and I cannot wait to see what WalkMS 2014 has in store for myself, my family and my team." - Jenna Field, Walk Captain at Washington Lake Park, NJ "As a person with MS, it is easy to feel isolated. Participating in the MS Walks gives me an opportunity to connect with others while doing something fun, and create lasting relationships in the process." - JoanWheeler (#6 Top Fundraiser, 2013), Wilmington Riverfront

“When I crossed the finished line at that first Walk, it was so emotional having everyone cheering for me. Knowing someone was there to help or hold my hand, telling me I can take one more step, don't give up, you can do it, makes all the bad days seem less important.” - Walk Captain at Valley Preferred Cycling Center, Diane Frantz

nationalmssociety.org | 1-800-FIGHT-MS

FIND A WALK MS EVENT NEAR YOU

Be Inspired. Get Connected.

alk MS.

April 12 Dover, DE Tatnall Building Wilmington, DE Wilmington Riverfront

April 27 Devon, PA Devon Horse Show and County Fair Lansdale, PA North Penn High School

Lehigh Valley, PA Valley Preferred Cycling Center Media, PA Ridley Creek State Park Norristown, PA Elmwood Park Zoo Sellersville, PA Lenape Park West Chester, PA East Goshen Township Park

May 3 Newark, DE Buffalo Wild Wings Philadelphia, PA Philadelphia Museum of Art

MAY 4 Medford Lakes, NJ Medford Lakes Newtown, PA Tyler State Park Ocean City, NJ Ocean City Boardwalk

Poconos, PA Pocono Raceway Reading, PA Gringâ&#x20AC;&#x2122;s Mill Rec. Area Washington Township, NJ Washington Lake Pk

MAY 30 Bridgeville, DE Twilight at Heritage Shores Long Neck, DE Twilight at Baywood Greens

Join us for a Walk MS Pep Rally on March 1 at the Crayola Experience in Easton, PA or March 2 at the Adventure Aquarium in Camden, NJ. Call 1-800-883-WALK to RSVP.

MS connection: WINTER 2014

Walk MS: Registration FOrm Name: Address: City: State:

Zip:

Phone: Email address: Is this an address or name change? Date-of-Birth:

Yes

Employer/School Name: City: State:

Zip:

Work Phone: ( ) T-shirt Size

XXL

XXXL

Connection to MS: My fundraising goal is $ Team name: Team captain: Walk site: Donation Amount: $ I will pay my pledge via: please choose one form of payment Cash

Personal Check | Make checks payable to National MS Society

Credit Card | Choose One:

Visa

MasterCard

Discover

AMEX

Account Number: Exp. Date:

Signature:

FOR WALK MS EVENTS IN PA OR NJ: Fax registration forms to 215-271-6122 NMSS, Greater Delaware Valley Chapter 30 South 17th Street, Suite 800 Philadelphia, PA 19103 215-271-1500 | nationalMSsociety.org/pae

FOR WALK MS EVENTS IN DE: Fax registration forms to 302-655-0993 NMSS, Delaware Chapter Two Mill Road, Suite 106 Wilmington, DE 19806 302-655-5610 | nationalMSsociety.org/ded

nationalmssociety.org | 1-800-FIGHT-MS

The National MS Society is here to support you through your diagnosis. We invite you to participate in a professionally-led educational series and support group for those who are newly diagnosed (within the past 5 years). This monthly teleconference call provides basic information about MS in the comfort of your own home. Developed and presented by a man living with MS, Lamar Freed, PsyD. this call will leave the participant both informed and equipped to find more information as it may be needed in the future. Topics will include:

//// M S 101 GROUP TELEPHONE SUPPORT

• MS Symptoms & Treatment Options • The Question of Prognosis: What will happen to me? • Who do I tell?

QUESTIONS?

Please contact Pat Thieringer, Community Outreach Manager at 215-271-1500 or pat.thieringer@nmss.org.

• Accessing the Medical System • Effects on the Family • Diet & Exercise • MS and Your Mental Health

WANT TO PARTICIPATE IN THESE CALLS?

On the first Thursday of each month at 7 PM: Dial-in Toll-free: (866)417-3327 Enter this conference code: 7228851813#

Gadget Corner: JarPop JarPop opens jars effortlessly with one easy lift. The vacuum seal on jars is popped and lids spin free, but remain on the jar. The lids stay completely resealable, and as an added bonus, JarPop is dishwasher safe. Not only does JarPop work for jarred kitchen products such as jelly and baby food, but also household products like paint cans.

Customers give JarPop raving reviews. One review assured the product works perfectly and notes that “For anyone with pain or lacking the strength in their hands to struggle with tightly sealed jars, this is a blessing.” You can find a JarPop and similar products at various online retailers.

Greater Delaware Valley Chapter awards four with Trustee Emeritus status Founded in 1954, the Greater Delaware Valley Chapter has become one of the most successful chapters in the country because of the longstanding commitment of its trustees, some of whom have served on the board for decades. It is for that reason that the chapter board has decided to honor four of these individuals with the title “trustee emeritus” and name a research fellowship worth $75,000 in each of their names – a fitting honor for four people who have truly made their mark against MS.

MS connection: WINTER 2014

Mike Bogdonoff

Mike’s involvement with the chapter began in 1988 when he attended a support group for people newly diagnosed with MS. Since 1992 he has been a major force in the MS movement both as a fundraiser and at the boardroom table: not only did he serve two terms as board chair of the Greater Delaware Valley Chapter, but he now sits on the Society’s national board.

Marc Brownstein

President of The Brownstein Group, one of Philadelphia’s leading advertising agencies, Marc joined the Chapter’s Board in 1996. He co-chaired the Leadership Class of 1998 campaign, a program that has gone on to raise more than $2 million over the years. He also served as the chair of the marketing committee and provided ongoing marketing support to the MS Dinner of Champions, one of the chapter’s key fundraisers.

nationalmssociety.org | 1-800-FIGHT-MS

Lenore Millhollen

The longest-serving trustee, Lenore has been a board member for 53 years. She founded the Friends of Multiple Sclerosis, a fundraising arm of the chapter; she was a long-term member of the PR committee; she served two terms as board chair and was a member of the MS Dinner of Champions and Women Against MS committees.

Larry Kane

Well known for his longstanding commitment to the National MS Society, Larry Kane has been the voice and face of the disease in the region for many years. Beyond his long service on the board and his willingness to appear at events no matter when and where they are, his biggest impact came when he founded City to Shore, the chapterâ&#x20AC;&#x2122;s signature fundraising event that has raised well over $50 million over the past 30 years. n

Thank you to Greate Bay Country Club Chairman and CEO Mark Benevento (far right) for his help in making The Right Notes fundraiser a success in October. The result was $60,000 raised for the fight against MS. Also pictured are(L-R) his son Mark Benevento, Jr. and daughter Victoria Benevento.

18 Living with ms

WORKING WITH MS: DON’T DO IT ALONE RESOURCES AVAILABLE TO ASSIST YOU Are you considering changing jobs? Are you looking for that next step in your career ladder? Have you been out of the workforce but thinking about returning to work? Do you have questions about disclosure in the workplace or how to accommodate your symptoms on the job? Employment issues can arise any time there is a change in your work situation or a change in your MS. When faced with employment questions, it is important to know that there are several resources available to help.

MS connection: WINTER 2014

provides technical assistance and support regarding accommodations, the Americans with Disabilities Act (ADA), disclosure, and self-employment for people with disabilities. JAN can be reached at 1-800-526-7234 or visit http://askJAN.org for a wide variety of resources and publications. Each state has a vocational rehabilitation (VR) agency whose goal is to assist individuals with disabilities to gain and maintain employment. The agencies that serve our tri-state area include the following: • Pennsylvania Office Of Vocational Rehabilitation (OVR) http://www.portal.state. pa.us/portal/server. pt?open=514&objID=552292&mode=2 • New Jersey Division of Vocational Rehabilitation Service (DVRS) http://lwd.state.nj.us/labor/dvrs/ DVRIndex.html • Delaware Division of Vocational Rehabilitation Services (DVR) http://dvr.delawareworks.com/

The Greater Delaware Valley chapter has an employment assistance and support program, MSWorks. MSWorks staff can discuss your employment options and help educate and inform you. MSWorks is available to individuals living with MS throughout Pennsylvania, Southern Jersey, and Delaware. Contact MSWorks (800) FIGHT-MS, mworks@nmss. org, or visit www.msworks.org.

MSWorks staff has trained many VR counselors to be prepared to serve people with MS and MSWorks is available to help you advocate for services. Visit your state VR agency’s website for field office locations or call the National MS Society at 1-800-344-4867 for contact information for your closest office.

The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor’s Office of Disability Employment Policy. JAN

Employment services are also available from your local one-stop employment center. The goal of the one-stop is to assist job seekers, with

nationalmssociety.org | 1-800-FIGHT-MS

or without disabilities, in finding employment. If you choose to self-identify that you are living with MS, the office may be able to provide some additional support services. To find your closest one-stop employment center, visit http://www. servicelocator.org/. Oftentimes, people with MS who are seeking employment would prefer to work for employers who may be doing targeted outreach to job seekers with disabilities. It is important to remember that you must still be qualified for the jobs for which you are applying. The employers on these sites may be recruiting through these resources in order to increase diversity in the workplace. There are several job boards that post jobs from employers who are actively recruiting people with disabilities, including the following: • Equal Opportunity Publications (EOP) Career Center http://www.eop.com/career.php

leader [lee • der] – noun

A person who leads or guides, one who sets precedence, forerunner, luminary, notable, pioneer, principal

The Greater Delaware Valley Chapter of the National MS Society is seeking outstanding candidates to join our 2014 MS Leaders Circle, and we need your help. MS Leaders Circle nominees are upwardly mobile professionals in the greater Philadelphia region who want to make a difference in their communities by raising funds for the fight against MS. Benefits of the program can include: networking, excellent personal visibility, hands on volunteer leadership and so much more.

• GettingHired http://www.gettinghired.com/ • National Business & Disability Council (NBDC) http://www.viscardicenter.org/services/ nbdc/ Please be aware that the National Multiple Sclerosis Society does not endorse these sites but shares them because they are considered valuable information. You may want to include them in your job search and add them to the sites you visit when looking for available positions. Working with MS is possible but you don’t have to do it alone. Get connected to resources. n

Pat Croce with 2013 Leader’s Circle top Fundraiser, Eric Kennedy Visit nationalMSsociety.org/ MSLeadersCircle for more information.

MS connection: WINTER 2014

Ask the Employment Expert Christina Forster is the employment services manager for Pennsylvania and Delaware.

I have been out of the workforce for several years and looking to get back into it. I have heard that the Vocational Rehabilitation Program can be helpful; can you tell me more about the services they offer and how to apply?

If you want to return to the workforce after being out for some time, your local office of Vocational Rehabilitation (VR) can be a great resource. Each state has their own office of VR – with the name varying slightly from state to state. VR works with people with disabilities in gaining and maintaining employment. When working with this

agency, you would be assigned to work with a rehabilitation counselor who will work with you to determine your vocational goal and the steps necessary for you to achieve that goal. Those steps and services can include evaluations, education and training, assistive technology, and job development and placement assistance. Where appropriate, they will conduct what’s called a vocational evaluation to assess your interests and see how your current skills are and if they are competitive –meaning, do you have the speed or skills to work in the field that you are interested in or worked in before. This may be helpful for someone who has been out of the workforce for a considerable amount of time or for someone who feels that due to their symptoms, they may not be able to continue in the same occupation. The other services they provide are designed to assist people with disabilities in finding employment so they may have access to employers and job leads. They may be able to explore assistive technology as well as education and training in addition to the job development and placement assistance. You can apply for services by calling your local office or filling out an application online. To find your local office within your state please visit: http://askjan.org/cgi-win/ TypeQuery.exe?902 n

nationalmssociety.org | 1-800-FIGHT-MS

Two local volunteers inducted into The Society’s Hall of Fame Linda Kraemer, Ph.D. After witnessing the effects of MS on a neighbor, Linda Kraemer took action. Elected to the Greater Delaware Valley Chapter’s board in 1994, she has since served on almost every committee, making her one of the most active trustees in its history. Linda most recently made her mark by using National Board Chair Eli her skills as a grant writer to revamp the chapter’s Community Impact Rubenstein, Linda Kraemer, PH.D., MS Grant materials, making it possible to properly evaluate grant outcomes. Society President Cyndi Zagieboylo

Dr. David Tabby Dr. David Tabby treats the most vulnerable MS patients, providing the widest range of care possible by accepting Medicaid (a rarity among neurologists.) Dr. Tabby, who has been heavily involved with the Society as a committee member, speaker and is an active Bike MS fundraiser, revived the MS program at the Medical College of Pennsylvania Hospital and National Board Chair Eli developed the Drexel MS program at Hahnemann University Hospital, Rubenstein, Dr. David Tabby, MS Society President Cyndi Zagieboylo each providing patients with new access to quality care. n

MUCKFESTMS.COM

MS connection: WINTER 2014

ANNUAL CONFERENCE Honorees Corporation of the Year Greater Delaware Valley Chapter

Total Rehab and Fitness

Based in Cherry Hill, TRF is making a lasting impact on the quality of life of many people living with MS; patients come from all over the area to access John Marmarou and his team’s multidisciplinary approach to care.

Friend of the ms society award Delaware Chapter

Senator Margaret Rose Henry Brookside Lions Club Sunny Schmidt Brandi Nowakowski Reverend Max Wolf and the All Saint’s Parish Thrift Shop This award is given to individuals, organizations or corporations that have provided outstanding support to the Chapter in the past year.

Marketing & Communications Delaware Chapter

Loie Powell has graciously provided graphic design services to the chapter throughout the year and has been creative and generous in that regard.

Corporation of the Year Delaware Chapter

Villages of Nobel’s Pond

The annual Girls Night Out event, presented by the Villages of Noble’s Pond, has been very successful due to the staff and team of volunteers who work tirelessly to provide a fun filled evening of glamour, food, information and entertainment.

Loie Powell

Norman Cohn Hope Award Delaware Chapter

Richard “Dick” Nenno, Sr

Dick Nenno has ridden in Bike to the Bay for 16 years and has raised over $200,000 in that time, earning him the coveted #1 bib. Dick was born blind and rides

nationalmssociety.org | 1-800-FIGHT-MS

in tandem with his friend, Rob Collins. Dickâ&#x20AC;&#x2122;s dedication and support to the cause have inspired many staff, volunteers and riders over the years. Watching Dick and Rob cross the finish line is always encouraging and brings a great deal of joy to all of us cheering them on.

Professional Impact Award Greater Delaware Valley Chapter

Dr. Lamar Freed

A psychologist, Dr. Lamar Freed leads a Men with MS group, he holds monthly teleconference calls with support group leaders and hosts a monthly newly-diagnosed support group.

Thacher Longstreth Award Greater Delaware Valley Chapter

Ian Harris

Through Bike MS and Walk MS, Ian -- who is also a board member and one of our most committed volunteers -- has helped raise more than $175,000 since 2005 - including funds generated through the Great 8 cycling tour.

Volunteer of the Year Greater Delaware Valley Chapter

Cindy Carmona

Cindy, who is a true ambassador of the MS Society, is the founder of the Success with MS Connections group, a VIP Walk Team Leader and a member of the Grings Mill Walk Committee.

Volunteer of the Year Delaware Chapter

J. W. Haupt

J. W. Haupt leads a group of volunteers who map and mark all of our bike routes. He also serves as a Bike Ambassador promoting our events at various cycling clubs and other events throughout the State. n

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 donâ&#x20AC;&#x2122;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.

MS connection: WINTER 2014

PROGRAMS Update Easter Seals OFFER SPOTS AT FAIRLEE MANOR CAMP: February 28-March 2 The Easter Seals of Delaware and Maryland’s Eastern Shore is offering spots at their Fairlee Manor camp. Call 1-800-FIGHT-MS or email Carol at carolyn.cave@nmss.org.

Physical Therapy Assessment Clinic: SPring 2014 The University of Delaware will be giving assessments of your ambulation, vision, nutrition, etc. Call 1-800-FIGHT-MS to set up an appointment!

Home-Based Employment Teleconference Series: March 20 Social Security Disability Application Secrets Teleconference Series: APril 3 Bowl over MS: April 12 Go for a strike with other kids affected by MS at Dave and Buster’s in Franklin Mills, PA. Call 1-800-FIGHT-MS to register.

THe Latest in MS Medications: May 2014 Learn about the newer MS disease-modifying therapies at this informative program for people living with MS and their loved ones. Register by calling 1-800-FIGHT-MS. n

March 3 – 9, 2014 is National MS Awareness Week which means it’s time to get your orange on! We plan to be in your community again this year with our open houses and hope you will see a lot of orange during this week. Tie an orange ribbon on a tree, your mailbox, your fence, etc. to show your support and help increase awareness. When someone asks you about the orange ribbons, it is your opportunity to tell them about MS - what it is and how they can help support people and their families living with the challenges of MS. Also look for opportunities to patronize restaurants in your community many will contribute a portion of their sales to the Society or to a Walk MS team. More to come as details are finalized but for now, get your orange ready! Visit nationalMSsociety.org for more information.

nationalmssociety.org | 1-800-FIGHT-MS

LOCAL UPDATES DELAWARE PUBLIC POLICY CONFERENCE The annual Public Policy Conference will be held March 10 – 12 in Washington DC. This is an opportunity for all chapters nationwide to come together to focus on key advocacy issues and to discuss them with Federal legislators. Some issues to focus on this year are: • Advocating for funding for medical research through the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP) • Advocating for appropriate funding for the Food and Drug Administration (FDA)

PENNSYLVANIA PUBLIC POLICY CONFERENCE On March 12, 2014, more than 300 activists will travel to Washington, DC to meet with their federal representatives to advocate for people with MS. This year’s priorities include funding for research as well

as support for rehabilitation technology. While we wish every MS activist could be there in person, there is still a way for you to be part of the excitement. Have an impact for people with MS. Become a virtual activist. It’s quick and easy to sign up. Email Laura Caccioppoli at laura. caccioppoli@nmss.org with your name and contact information to sign up! At the 2014 PPC, MS activists will urge Congress to: • Support funding for the National Institutes of Health (NIH), MS research through the Congressionally Directed Medical Research Programs (CDMRP) and the Food and Drug Administration (FDA). • Cosponsor a bill that would create a separate benefit in Medicare for complex rehab technology, protecting access to complex rehab power wheelchairs for those with progressive MS (H.R. 942/S. 948). • Join the Congressional MS Caucus, showing commitment to finding policy solutions to those affected by MS. n

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MS connection: WINTER 2014

Face of MS: Bill Clement

Two-time Stanley Cup Champion and NBC Sports hockey personality Bill Clement knows a lot about overcoming challenges, but he wasn’t prepared for the difficulties his daughter would face after being diagnosed with MS. Before Christa was diagnosed at the age of 29, how much did you know about multiple sclerosis? Not very much. I had known people with MS, and I knew that it was a neurological disease. I also knew that it could be debilitating but didn’t know there were different strains of MS.

Bill Clement presents Larry Kane with HIS donation of $5,000 to the National MS Society in honor of his daughter Christa.

When she first told you it might be MS, how did you react? We were stunned. A few weeks later my wife, Cissie 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. She seemed to have immediate resolve and soon formulated an information plan. She began researching and learning about the drugs and therapy that could help her. When Christa and her husband left to return home to Canada, Cissie and I sat at the kitchen table and had a good cry. But I knew our daughter was going to attack the MS as aggressively as the MS has tried to attack her. Today, she has a 4-year-old daughter and a 6-year-old son. I could not be prouder.

nationalmssociety.org | 1-800-FIGHT-MS

But I knew our daughter was going to attack the MS as aggressively as the MS has tried to attack her. Have there been any surprises in terms of how she has dealt with the impact of MS? I always knew that Christa was a strong woman, but I am still in awe of how proactive she has been in managing her MS. She makes me smile every day.

27 You also have a daughter (Regan) with Down Syndrome. What have you learned through theIr experiences and personal challenges? They have constant hope and constant optimism and as a result, have constant positive influence on everyone they come in contact with, which is the true essence of EveryDay Leadership. As I started to write my book, EveryDay Leadership: Crossing Gorges On Tightropes to Success, and I looked for examples, Christa and Regan were the first people that came to my mind. n

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

DANCE YOUR WAY TO A WORLD FREE OF MS

Y! A D O T ER R E G I ST ORG . S M R N FO O H T A ZU M B 15-271-1500 OR 2

Zumbathon速 for MS

PHILADELPHIA MUSEUM OF ART SUNDAY, MAY 4, 2014