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MSConnection

Spring 2013 Greater Delaware Valley Chapter

Newsletter

New oral therapy available

And Then There Were 10

Earlier this spring, the Food and Drug Administration approved Tecfidera™ capsules (dimethyl fumarate) as a first-line disease-modifying therapy for people with relapsing forms of MS. This makes the third oral therapy approved for relapsing MS in just three years, and the tenth disease-modifying treatment available in the U.S. Tecfidera, which is taken twice a day, is thought to inhibit immune cells and molecules, and may have anti-oxidant properties that could be protective against damage to the brain and spinal cord Twicedaily Tecfidera was shown in clinical trials to significantly reduce relapses and

CONTINUED ON PAGE 5

INSIDE 10 THIS ISSUE

But You Look So Good — Latoya Ross

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16 22

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Fired for having MS: Jane Gagliardo’s story

MS is not who I am — Igor St. Phard

Face of MS: Kathryn PannepacKer

Connection GrouP — Getting You Connected

02 National Multiple Sclerosis Society Greater Delaware Valley Chapter 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611

Chair: Marianne Jackson Vice Chairs: Valli Baldassano, Larry Kane President: Tami Caesar Vice President, Client Services, Communications And Operations: Kevin Moffitt Editor: Yarissa Reyes ©2013 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 pae@nmss.org or the address above. Include your name and a phone number or email where we can reach you, if necessary.

NOTE: we may edit your letter for length and content.

MS connection: Spring 2013

local events To register for these or other events, visit calendarMS.org. May 11 New Horizons: Latest in Research,

Treatments & Resources, Reading, PA

May 14 LINKS teleconference: Minimizing Your Risk of Falls

May 21 LINKS teleconference: Healthy Living with MS: Diet & Nutrition

May 28 LINKS teleconference: Clinical Trials & Progress in MS

May 29 An Evening at the Devon Horse Show & Country Fair, Devon, PA

June 8 & 9 MuckFest MS, Newtown Square, PA June 20 MS Family Night with the Reading Fightin’ Phils

Connect with us online: nationalMSsociety.org/pae n pae@nmss.org Like us: facebook.com/greaterdelMS Follow us: twitter.com/greaterdelMS Watch us: youtube.com/nmsspae Pin us: pinterest.com/greaterdelvalMS

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Letter from the president

LOOKING FOR PROGRESS ON PROGRESSIVE MS As the cover story suggests, there is much cause for optimism in the MS community. With the approval of a third oral Tami caesar, president treatment, and the tenth FDA-approved medication for relapsing forms of MS overall, we can again take pride in the strides we are making on behalf of people living with MS. In addition, we are thrilled we have raised the necessary monies to fully fund the vitamin D clinical trial aimed at stopping disease progression (see page 13 for more information). However we are mindful that as people with relapsing forms of MS are given more choices, people living with progressive MS – a group that may include over 100,000 Americans – are still waiting for news on the approval for the very first treatment that will slow progression or, for that matter, reverse it. I want to assure everyone in the MS community that progressive MS is something we at the Society take extremely seriously. Before the disease-modifying medications became available, approximately 50% of people with relapsing-

remitting MS developed progressive MS within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition. The stark realities and continued lack of treatment options for progressive MS have led the Society to lead the formation of the International Progressive MS Collaborative. In the first meeting held earlier this year, more than 170 MS researchers and clinicians from around the world gathered to discuss key challenges and strategies to accelerate treatments for progressive forms of MS. Leading experts across all the major research areas set priorities for moving forward. They talked about the potential of repurposing treatments for other diseases; the need for faster and more economical clinical trial designs to speed research; the potential impact of symptom management/exercise programs and much more. While a meeting is not a new treatment, it is a beginning. And just as everyone who is raising money for Walk MS, MuckFest MS and Bike MS has a hand in the latest treatment developments, you are also playing an essential role in bringing some of the best researchers in the world to find ways to treat the most serious and destructive form of the disease. This progress is something we can all be proud of as we work together to make 2013 our most successful year ever. Sincerely,

Tami Caesar, President

04 Research BRIEFS National MS Society joins collaborative effort to identify and speed development of nerve-protecting drugs

The Alzheimer’s Drug Discovery Foundation, Beyond Batten Disease Foundation and the National MS Society announced a funding collaboration to support the creation of the Collaborative CNS Screening Initiative (CCSI), a central repository of chemical compounds that have shown significant central nervous system activity. The idea is to share data and speed the development of new therapies that may protect the brain from damage. Led by the Harvard NeuroDiscovery Center’s Laboratory for Drug Discovery in Neurodegeneration, the CCSI will share emerging compounds with the potential to treat diseases of

MS connection: Spring 2013 the central nervous system among academic drug discovery centers to maximize their potential and accelerate drug discovery efforts within the neuroscience community.

Researchers report on brain imaging to detect tissue damage associated with cognitive impairment in MS – may help determine benefits of treatments

Researchers from The Netherlands report that they were able to distinguish between people with MS who had cognitive impairment (such as memory and concentration problems) and those who did not, based on brain scans using a specific type of imaging (DTI, or diffusion tensor imaging). The study suggests that loss of nerve-insulating myelin, more than the loss of nerve cells, may be a key factor in cognitive problems, and supports the approach of using DTI as one way to measure the impact of potential therapies aimed

at protecting the nervous system from MS damage.

Society-supported studies point to possibility that dietary salt may stimulate activity of key immune cells involved in MS attacks

Three studies by collaborators at Yale, Harvard and MIT/ Broad Institute suggest that dietary salt can speed the development of an MS-like disease in mice, and provide new insights on immune system activity involved in MS. While more research needs to be done to confirm a role for salt in triggering MS, or to determine whether reducing salt can inhibit MS immune attacks, these studies pinpoint new avenues for strategies that can decrease MS attacks. n

More research

Visit us online at nationalMSsociety.org/pae to stay on top of the latest MS research.

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CONTINUED FROM COVER disease activity on MRIs, and in one trial it reduced progression of disability. The FDA’s approval was based largely on results of two large-scale phase III studies of Tecfidera capsules, which were conducted in people with relapsing-remitting MS. The results were published in 2012 and showed that it reduced risk of relapse by as much as 49%. Common adverse events experienced by people taking Tecfidera include flushing and gastrointestinal events issues. Before starting treatment, the FDA recommends that a person’s health care provider assess a recent

DID YOU KNOW? More than 4,400 local people living with MS have made a donation to the Society or have raised money by taking part in one of our fundraising events since 2010. Make 2013 your year to participate in one of these great events!

(within 6 months) blood cell count, and repeat the blood cell count annually thereafter. Before starting treatment with Tecfidera, women should talk to their health care providers if they are pregnant or planning to become pregnant. Taking a disease-modifying therapy is currently the best way to reduce MS disease activity. Selecting an MS therapy should be done in collaboration with an MS specialist. To find a neurologist in your area, call 1-800-FIGHT-MS. n

2012

SPRING

SUMMER

City to Shore Ride 2012

FALL

YEAR-ROUND

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CHAPTER WELCOMES NEW INTERNS From advocacy and community outreach to marketing and development, these 19 interns are making their mark against MS this spring semester. These students, seeking a challenge and the opportunity to further their college experience, support chapter staff in planning, cultivating, marketing and other duties that provide them with lasting skills and contribute to the success of the chapter. If you or someone you know is interested in our internship program, please contact Joy McManus at 1-800-548-4611 or email joy.mcmanus@nmss.org. n

MS connection: Spring 2013

SPRING 2013 INTERNS < Aubrey Bellezza, Marketing > < Amy Bendekovits, Development > < Jacqueline Bene, Development > < Kaitlyn Bennett, Marketing > < Lindsay Deal, Marketing > < Cassandra Dramis, Community Outreach > < Mary Caitlin Dugary, Marketing > < Natasha Friend, Community Outreach > < Ninilola Jegede, Community Outreach > < Margaret Katana, Advocacy > < Erin Kennedy, Development > < Colleen Kobol, Community Outreach > < Allison Leyh, Development > < Jessica Milinichik, Advocacy > < Carly Mitchell, Development > < Marissa Paesano, Advocacy > < Aimee Ralph, Community Outreach > < Samantha Siciliano, Development > < Lauren Spires, Development >

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Fundraising

Annual Metro Drive for MS DIY FUNDRAISING EVENT

By Barbara Clark, event organizer

Our son Spike was diagnosed with MS in 2009 at the age of 20. Needless to say, Walt and I were devastated. Like all parents, we want to fix things for our children, and I want things fixed NOW. Finding out there is not a cure for MS did not sit well with us, it simply was not acceptable.

number of people who just knew someone with MS. In its first year, the outing brought in $14,000. The golf outing has turned out to be an event not only for our employees to enjoy, but a cause to help give something back to the community. In its second year, the event brought in $22,000, almost doubling the first year. How did that happen? The real secret is that everyone wanted to be a part of it. We became smarter and started earlier in seeking out sponsors and the like. The kickoff for the fall 2013 outing, now becoming a wonderful tradition, will take place again this May. For more information on the outing, please contact Barbara Clark at 267-525-0272 or at bclark@metropa.com. n

We did our first Walk MS event in the spring of 2010 and that was great. We were inspired by how many of our friends and family encouraged our cause, but we just felt we could do more. We brought our idea, the Annual Metro Drive for MS, to the Metro Public Adjustment President Steve McCaffrey, who gave us his blessing. We gathered a committee of our peers at Metro to help assist us on our quest. As we rolled out the golf outing plans to our company at the annual Metro Convention in Atlantic City in May 2011, we were once again caught off guard. We were surprised by just how many people within our own company were living with MS and the

Metro Drive For MS Fundraising event

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fundraising

Raising the stakes for MS: The Preakness at the Piazza Ladies don your hats and gentlemen don your bow ties – this is the party of the spring! Join the National MS Society and 1,000 local young professionals at the Preakness at the Piazza, a new and unique 21 and over event for Philadelphia. Enjoy great entertainment, food and drinks while watching the 138th Running of the Preakness Stakes, a premier thoroughbred horse race, on the Piazza’s Jumbotron. Guests will have the opportunity to bid on prime auction items, in addition to

MS connection: Spring 2013

their favorite horses. Proceeds from this event will help the National MS Society fund MS research and provide services for local families coping with the disease. The event will take place on Saturday, May 18 from 5 – 9 p.m. at the Piazza at Schmidt’s, 1050 N. Hancock Street, Philadelphia. For more information and to purchase tickets visit preaknessatthepiazza.com or call Maria Oberst at 1-800-548-4611. n

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Young Couples Connections Group

with the chance to see how other couples experience and manage with this disease.

By Michael Black-Smith

The other half of our meetings take a more traditional format. These meetings are held on the fourth Saturday of every-other month at 10 a.m. at Magee Rehab Hospital, 1513 Race Street, Philadelphia.

As my wife and I were starting to cope with an aggressive disease onset in 2009, we turned to a number of sources for help understanding the “how’s,” “when’s” and “why’s” of my multiple sclerosis. Among these resources were the support groups available through the Society. However, helpful as they all were, we still felt the need for a community/group that would more specifically address the things we were going through as a young couple facing MS. We were also looking for a way that my wife could get the same sense of validation through shared experiences that I had been finding with these groups on my own. Thus was born the idea for a group for younger couples – where both the well-partner and the partner with MS could come together for support. The topics we cover range from issues and questions of professional identity, family and children, to concerns about a changed/changing dynamic between the couple. We try to provide both partners

In a slightly non-traditional twist on support groups, half of our meetings are at bars or restaurants that provide an upbeat and fun atmosphere. These casual meetings are on the third Tuesday of every-other month at 6:30 p.m. and since the location changes frequently, please see our Facebook page for details (search for Philadelphia MS Young Couples on Facebook).

For more information about this and other Connections groups, please contact Pat Thieringer at 1-800-548-4611 or email pat.thieringer@nmss.org. n

Young couples support group

10 But you look so good Twenty-nine-year-old Latoya Ross hears it all the time, “But you look so good.” The spunky Philadelphia resident says that’s a typical response whenever she tells anyone of her MS diagnosis. “Even the nurses tell me, ‘But you are walking fine.’” Diagnosed at age 20 with relapsing-remitting MS, Latoya began experiencing numbness on the left side of her face and left arm. She was off-balanced and had trouble forming or responding to questions. “I knew what I wanted to say, but the words wouldn’t come out.” One day as Latoya headed out to pick up her paycheck she almost stumbled down the stairs at her subway stop. “I was so naïve to the symptoms. I kept thinking it was because I was working too much and trying to go to school. I felt tired all the time.” That same night after attending a Phillies game with her cousin, she began feeling worse. “I phoned my friend and told her how I was feeling. She said to call an ambulance but I just thought if I lay down I would feel better.” Latoya woke up in the middle of night panicked thinking “something’s not right,” and called 9-1-1. The ambulance took her to Lankenau Hospital where they did a CAT scan and an MRI. “The CAT scan

MS connection: Spring 2013

Latoya Ross

came out fine but the MRI showed lesions on my brain.” A second opinion confirmed the diagnosis. “I had no idea about MS. I had heard Montel Williams had MS, but I didn’t know anything about it. I cried when the doctor told me I had MS. You don’t think it can happen to you. I was so young.” An MS diagnosis meant many changes for Latoya’s future plans. Latoya came from a long line of military men and women. She wanted to join the Navy and travel around the world. “I was planning on joining the Navy. I was studying for the entrance examination and was getting ready to take the test. I was devastated.” Latoya decided to look at this set back as an opportunity. “My aunt who raised me used to tell me that no matter what situation you are in, there are always people who have it worse than you. Through it all, I thank God because I’m still blessed despite my MS. It has made me stronger. Life looks different. There’s people who can’t see, smell, hear… I am able to walk, cook and remain independent.”

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“MS is tricky. One minute you feel like you’re on top of the world and the next minute you feel like a ton of bricks hit you. But I’ve learned to listen to my body. I don’t ignore my symptoms anymore. If I’m not feeling well I call the doctor right away.” A recent MRI showed more lesions for Latoya who takes glatiramer acetate (Copaxone) to slow disease-progression. A new monthly shot of methylprednisolone (Solu-Medrol) has been prescribed for her acute exacerbations. “I am thankful I can still get around. I like to cook, clean and do things on my own.” While a friend has offered to accompany Latoya on her doctor’s appointments and take her grocery shopping, she feels like she can do it all by herself. “I like to take advantage that I am still able to do it.” “Life is precious. Take it one day at a time. Don’t take life for granted.” Although Latoya worries what her future may hold, she says it’s all in God’s hands. “I worry about being pregnant one day. What if I have a flare up and can’t hold my baby in my arms? But it’s not up to me. Whatever God’s plan for me is – it’s in His hands.” Latoya volunteers at the chapter office whenever possible and tells us, “If the day comes when I can’t come in to the office anymore, I want you to mail me the stuff so I can do it from home. I want to help. I like to help people.” n

Fired for having MS jane gagliardo’s story

When Jane Gagliardo was fired from her job in 1996, she knew it was because of her multiple sclerosis. Her manager had been openly uncomfortable with her disease and was reluctant to allow reasonable accommodations at work. Jane is the inspiration for a new book out this spring titled “Call to Witness,” the extraordinary and empowering story of a woman who stood up for what she believed in, even when it meant standing alone. Shortly after she was diagnosed in the late 1980s, Jane joined a large pharmaceutical company as an entry clerk. She enjoyed her job and got along well with all of her colleagues. Jane performed well and her career progressed over time. “I planned to stay there for the rest of my career,” she said. Everything changed when a new manager was appointed in 1996. Around this time, her company’s main office building was being renovated, which meant that Jane and her team were placed in a temporary structure. It was during the summer months and, like many other people living with MS, Jane found it difficult to cope with the heat. “It

12 was like being in a sauna,” she said. Jane shared her diagnosis with her manager to explain why she needed air conditioning. She was then asked for a letter from her doctor confirming her diagnosis. Although her request for air conditioning was granted, her relationship with her manager became more difficult. Jane’s workload began to increase to the point that it was unmanageable. Although she had always performed well, she began to struggle with the unrealistic demands that were placed on her. She spoke to her manager and the human resources department, but her workload remained the same. Instead of helping her, Jane’s manager accused her of performance issues and gave her a series of negative reviews. Eventually, she was fired. At first her employer tried to offer Jane a severance package to compensate for the 10 years she had worked for the company, but Jane refused to sign the papers, believing she had been wrongly terminated. Jane was devastated. She didn’t know what she was going to do without her income, and without the job she had once loved. She knew that her dismissal was unjustified, but she didn’t know what she could do about it. She was unfamiliar with the Americans with Disabilities Act (ADA) and the rights that she was entitled to until she met attorney Patrick Reilly. But Reilly was reluctant to take on the discrimination case since the ADA was so new, with few legal interpretations. In the meantime, Jane struggled to find a new job and was forced to

MS connection: Spring 2013

make a long commute every day to work for a friend’s telemarketing company.

What they did was wrong. I knew I needed to make my voice known The judge decided that her dismissal had violated the ADA. It was a landmark case because memory and concentration were not previously on the ADA list of life functions. Jane was awarded more than $2 million, a portion of which she has given for MS research. Jane faced challenges from her MS. She has had exacerbations and blindness in one eye. She suffers tremors and spasms. One of the biggest challenges she has faced has been uncertainty. “Every day is a mystery with this disease. You just don’t know what you’re going to wake up to.” Through it all, Jane has never despaired. “I choose to focus on my blessings,” she said. “I have a great family. I feel blessed that I do not have a progressive form of the disease.” She chooses not to fixate on the discrimination she suffered, or on how her colleagues continue to run in the other direction when they see her, she assumes out of fear of losing their jobs. Jane is an active member of support groups in her local area. She is a certified counselor for abused women. She finds strength in helping others and encourages everyone she meets to focus on the positive: “I like

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helping people. We empower each other to face whatever we need to face and go on.” She also encourages people who are living with a disability and working to be aware of their rights through the ADA and other legislation. She hopes that no one else will have to go through what she went through all those years ago. “Call to Witness” is written by Sherry

Vitamin D research clinical trial update We’re happy to report we’ve reached our goal of raising $1.3 million to support a clinical trial aimed at determining if taking high doses of vitamin D can reduce the frequency of MS attacks and whether they are a safe addition to standard MS therapies. In this clinical trial, patients with relapsing-remitting

13 Blackman, a Presbyterian minister, and published by Broad Street Press of Monroe County. It is currently available on Amazon and at local bookstores. A percentage of the proceeds from this book will go to support MS research. For more information about issues around employment and MS, please visit MSWorks.org or contact Christina Forster, the chapter’s Employment Services Manager at Christina.Forster@nmss.org. n

MSWORKS MS will receive high-dose or low-dose oral vitamin D in addition to glatiramer acetate (Copaxone). Patients will be evaluated for two years, and the effect of high-dose vitamin D supplementation on the rate of MS attacks and on the number of new lesions and change in brain volume on MRI will be determined. If the study shows that vitamin D supplements reduce disease activity in MS, it is possible that patients with MS will be given vitamin D in addition to the MS medication they are on. This clinical trial is currently recruiting patients. For more information, visit clinicaltrials.gov/ct2/ show/NCT01490502. n

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MS or not MS? That is the question. In 1998, Lisa Krauss experienced the first symptoms of what would become MS, but she brushed them off. An avid bike rider, Lisa did not see anything wrong with having muscle spasms here and there. By 2008, Lisa struggled with the severity of her spasms and headaches. “The muscle spasms really started to take a toll on my body,” she said. They became so severe that her doctor recommended she see an osteopath. Unable to establish a cause, she went on to receive an MRI which revealed a lesion on her spinal cord.

Lisa Krauss

MS connection: Spring 2013

Lisa felt as though she had finally discovered the cause of her symptoms. She refused to let MS dictate how she lived and continued to pursue her love of biking and playing pool. When Lisa returned to the doctor for an MRI only a few months after her initial diagnosis, she received the most surprising news of her life when the doctor revealed that the lesion no longer existed. Her MS diagnosis had been overturned. For the next three years Lisa lived her life as though she was free of MS – playing pool and biking – but knew something was not right. “There were days when I would bike close to 20 miles and others I struggled to walk up my steps to the house,” said Lisa. In 2011, Lisa made the decision to visit a neurologist at Jefferson Hospital and after explaining her symptoms, received an MRI. The MRI revealed four lesions on her spinal cord and MS reentered Lisa’s life. Unsure of the diagnosis from Jefferson, she went to the University of Pennsylvania for a second opinion that also exposed the lesions, confirming her MS diagnosis for a second time. Following her initial diagnosis in 2008, Lisa did not know much about MS, but recognized that obtaining reputable information was the first step to understanding the disease more fully. She connected with the National MS Society to receive information about treatments, support programs and to connect with other individuals living with MS. Lisa is determined to live her life as normally as possible and to not let MS ‘get her down.’

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always numb; going up stairs is a real struggle and is now my biggest concern.”

However, at night, Lisa struggles to fall asleep because she experiences intense numbness and tingling in her legs and feet. “My feet are

A strong support system allows Lisa to remain positive and live her life to the fullest despite her disease. Her husband and his two sons have been very supportive, as well as her mother, who was sometimes apprehensive to hearing about MS. Lisa’s best friend is her biggest fan and supporter, through both the difficult times, as well as in her decision to participate in the Society’s Bike MS: City to Shore Ride. She encourages those who are newly diagnosed with MS to not dwell, but instead focus on taking care of themselves. “Look at all of your options; don’t rule out anything and especially don’t get down on yourself.” n

THANK YOU! 2012

Many thanks to the thousands of walkers and volunteers who made Walk MS 2013 a success! We asked you to Be Inspired, Get Connected and Walk MS and you did just that. Your support of this event has moved us ever closer to our goal: a world free of MS. We’ve been walking since 1988 and have raised more than $10 million dollars to help support people living with MS. Thank you for being a part of that! We welcome feedback about the event. Tell us about your Walk MS experience by writing to us at pae@nmss.org or calling 1-800-883-WALK.

16 MS IS NOT WHO I AM Contributors: Aimee Ralph and Aubrey Belleza

Yardley, Pa. resident Igor St. Phard has committed himself to not allowing MS to bring him down. “This is not who I am, and not who I am going to become.”

The diagnosis Prior to his diagnosis, Igor, 42, was an athlete who had been working vehemently on a dream of launching his own line of organic sports drinks. In 2008, following the death of his mother and oldest daughter, Igor felt as though his life was on a downward spiral culminating with the economic downturn impacting the success of his new business endeavor. For the first time in his life, Igor’s positivity faltered to a point where his days were filled with feelings of sadness and depression. As he attempted to reconcile the challenges in his life, overwhelming emotions began to affect his body with what appeared to be symptoms of Crohn’s Disease. Igor faced what he believed was a herniated disk and his daily exercise routine was no longer a

MS connection: Spring 2013

priority. Around Thanksgiving the symptoms worsened and Igor started to experience numbness in his heels. His primary doctor ordered a cortisone shot and with no positive result, recommended Igor visit a neurologist under the suspicion his symptoms alluded to an autoimmune disease. The neurologist ordered a standard MRI which revealed that Igor, in fact, had lesions on his brain indicative of multiple sclerosis. To confirm the diagnosis, Igor sought a second opinion at the Hospital of the University of Pennsylvania. With this information, Igor began his battle with relapsing-remitting MS. Unsure of the complexity and unpredictability of MS, Igor experienced emotional uncertainty about his future and of the impact MS would have over his daily life.

Medications MS took a major toll on Igor’s body in a very short time. His neurologist ordered an immediate start to treatment with interferon beta-1a (Avonex); however, he saw little change in the symptoms of his MS and experienced unbearable side effects. The doctor switched Igor’s medication to glatiramer acetate (Copaxone) which reduced the side effects immensely, but did not help with the progression of Igor’s MS. The oral drug, fingolimod (Gilenya), proved to be most effective in slowing Igor’s progressive symptoms with minimal side effects. To date, Igor takes diazepam (Valium) to assist

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with the spasticity in his legs, which Igor compares to “a hot knife going through my legs,” alongside an anti-depressant.

Exercise The implementation of an effective drugregimen was the first step in Igor’s hope to put off using a wheelchair. He re-committed himself to exercising under his physician’s advice who insisted that physical activity would help with the emotional toll of his diagnosis. Igor uses a stationary bike on a daily basis to maintain movement in his legs, as well as performing light abdominal exercises and occasional upper body strengthening with a pull up bar. In addition to improved mobility and noticeable physical changes, he stated that exercise has become ‘one of his partners’ in his battle against MS. Igor stated that a personal goal of his is to complete a MuckFest MS course but he realizes that his body will need to be paced in order to prevent injury.

Family Igor’s MS diagnosis has meant major lifestyle changes for both his and his family’s lives. Familial support has aided in his fight against MS especially since his wife, Raphaelle, spends three to four days a week away as an international flight attendant. As a result, Igor has taken on the role as the primary family caregiver while Raphaelle travels between the U.S., Japan and China throughout the week. At home, Igor cares

for their children Mahailia (14), Sabrina (12), Aidan (12) and Allegra (2). “My family has been a very strong support system,” says Igor. They are still processing that he is not the same dad they had before who could run, jump, and chase them around, but his care and compassion for their needs remains evident. Igor cooks meals for his children while his wife is away. Although difficult at times, Igor’s passion for cooking stems from his belief that his children should have access to healthy food choices. He lines up all the pots and pans ahead of time so that when it’s time to cook he has everything handy. The daily struggles of MS only account for half of Igor’s care, with the other half comprised of his dedication to Allegra, who has been diagnosed with Down syndrome. Looking after Allegra every day is challenging; however Igor is thankful for the opportunity to spend quality time with her. Caring for his daughter is a struggle due to his restricted mobility and fatigue, a common symptom of MS. Allegra visits an occupational therapist, as well as a physical therapist, but Igor hopes for additional access

18 to resources to manage her care. While it has not been easy for the family to adapt to the changes, they have remained strong for him. He and his family are faith-driven and their church has helped immensely to accommodate their needs.

Motivation and advice Regardless of how much Igor exercises, he believes the strongest muscle in the body is the brain and positivity is essential. “One thing I’ve learned is that I cannot be ashamed of my MS and anyone with MS should not be ashamed, but rather show how they are fighting it.” He believes that living with MS requires readjustment and recalibration of one’s life. “Listen to your body and when you feel overwhelmed or fatigued, take it as a sign that you need rest.” Coming from a broken home, Igor was accustomed to giving up and at one low point in his life he felt like ending it all. He made the choice to put to rest such thoughts and wants to show his family that giving up should not be an option. “It will take more than living with MS to kill me.” To remain engaged, Igor has become an avid reader and loves to read an array of book genres, believing this helps him stay focused.

Life is a marathon, not a sprint and you need to pace yourself.

MS connection: Spring 2013

Society support Following the advice of his neurologist, Igor phoned the National MS Society and has been working with MS Navigator Evan Marcus of the Greater Delaware Valley Chapter. “Evan has been phenomenal. The Society helped me with food cards for groceries and some monetary support. They also helped me get counseling services for my wife and me.” “You’re not by yourself in this. Anyone recently diagnosed should make the call just to talk with someone because the National MS Society is a wealth of resources to helping people and families living with MS.” n

HOW CAN WE HELP YOU? Call 1-800-FIGHT-MS to speak with an MS Navigator today. We can help you with: • registering with our chapter • finding a newly diagnosed program • financial assistance • finding emotional support • finding a wellness program • connecting with a support group • finding a health-care provider • making a long-term plan • locating transportation to your neurologist

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MS ACtivists take over the hill By Karen Mariner, MSS, MSCIR

More than 300 activists from across the country attended the 2013 Public Policy Conference. While the weather did not cooperate, the PA and NJ delegation learned about the federal policy priorities for 2013. Considering the current conversations in Washington about sequestration, it should come as no surprise that our policy priorities are focused on preserving crucial MS research programs and funding.

Priority issues included preserving funding for the National Institutes of Health, Food and Drug Administration and the Congressionally Directed Medical Research Programs. We also continue to grow awareness through membership on the MS Caucus. Has your member joined? Visit our new advocacy website to find out! n

join the discussion online

ADVOCACY

PA:

msactivepa.wordpress.com

facebook.com/MSPACAN

@MScanPA

NJ:

msactivenj.wordpress.com

facebook.com/MSNJCAN

@NMSSNJCAN

Pennsylvania advocacy group

our PA Delegation: Regina Lisella Sue Gildea Sandy Carter Allison Coia Amy Bendekovits

OUR NJ DELGATION: Dr. Noreen Sisko

20 My experience IN WASHINGTON By Amy Bendekovits

My name is Amy Bendekovits and my father passed away due to the symptoms of MS just three years ago. Because I understand the daily struggles and concerns of families and people living with MS, I wanted to make a difference. I want to help find a cure. After writing a short essay on my experience, I received acceptance to travel with the Greater Delaware Valley Chapter to the Public Policy Conference in Washington D.C. I was incredibly excited when I found out, and quite honored. The conference was held March 4-6th in Arlington, VA. The purpose of the conference is to learn about the public policy issues that

MS connection: Spring 2013

surround MS and then to lobby before our legislators on Capitol Hill. This year we focused on a few issues: MS research funding to the National Institute of Health & Congressionally Directed Medical Research Programs; adequate resources for the FDA; joining of the MS Caucus; and the passing of a MS Resolution. These important issues will help shape the future of MS research and lead to finding a cure and better treatments. Over the course of the three days, we spent time in various panel and topic discussion groups to understand the issues about MS. The conference was also a great place for MS Activists from all over the country to get together and network. I was able to meet some of the most remark people. The Capitol Hill visit was scheduled for the final day. Unfortunately, due to the weather, the day and appointments had to be cancelled. This did not stop us! We continued to spread the word via social media and will continue to conduct in-district visits with our legislators. Overall, the conference was a wonderful and educational experience. Together as a group, we will STOP MS, RESTORE what has been lost, and END MS forever. We are MS Activists and we will not stop until a cure is found. n

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my special grandmom When 11-year-old Jenna Troyano was asked to write an essay at school, she chose to write about her grandmother, Jeannette Palmieri. Jeannette, from New Jersey, has been living with MS for more than 30 years. Jenna got an A for this touching tribute to her ‘special Grandmom’.

My special grandmom by jenna troyano

“You have a special Grandmom” I hear my Grandmom say to my little brother. When I heard those words I thought to myself I really do have a special Grandmom don’t I. When I look at my friends Grandmom’s they don’t look like my Grandmom or do what my Grandmom does. My Grandmom may be special, but I wouldn’t trade her for any other Grandmom in the world. Even though she lives her life with Multiple Sclerosis I still love her with all of my heart. Multiple Sclerosis is a neurological disease. Every case is different, but my Grandmom’s case has gotten so bad that she can’t walk. She was diagnosed with MS at 29 and has been struggling with it ever since. She could walk with a cane or walker for most of her life, but in her 50’s it got worse and now she can’t walk at all. My Grandmom once asked me “are you

disappointed in me because I can’t walk?” I said “no the exact opposite. I am proud of you for persevering even though you can’t walk.” It’s true I love her and are proud of her for continuing on with her life. My Grandmom is an inspiration to women. She screams keep going don’t give up. She makes you want to keep going and most important she makes people be better. She changes the way they look at life. Makes them appreciate what they have. She does what she can to live a full and happy life. She is special and I love her for it. Since my Grandmom has MS I am aware of all the people around me that can’t walk. My whole life I have held the door for people who can’t or have trouble walking. Also when I see people parking in Handicapped spots without a tag it makes me realize that because of my Grandmom’s special needs I am aware. It also makes me realize that because of my Grandmom’s special needs I would never even think of parking in the handicapped spot or not holding the door for people who can’t or have trouble walking. When I am with my Grandmother I do not feel uncomfortable or out of place because I don’t care what people think. I love my grandmother for who she is and would never even thinking of trying to change her. Even though she is a special Grandmom I would never trade her for any other Grandmom in the world. I am always thankful that I can walk. I have high respect for any Handicapped people and that will never go away. Therefore my Grandmom is special and I love her. I don’t care what other people think of her all that matters is what she thinks of herself. I know she may be discouraged sometimes, but she is normally positive, optimistic, and cheerful. She is perfect to me. n

22 Connection Programs

Getting You Connected The National MS Society Connection Programs bring together people who share a common life experience for support, education and mutual aid. Benefits of participating in a connection program include learning new information and strategies for managing your MS; finding support from others; the opportunity to help others; and new power and confidence in facing the challenges of living with MS.

Connection programs are available in a variety of formats including: Local Connections Support Groups The Society self-help groups have different purposes and goals. Groups may focus on support, advocacy, education or be more social in nature. Some groups also serve specific populations, such as young couples, care partners, or African-Americans. Visit nationalMSsociety.org/pae for a list of our chapter programs. Members of self-help groups share a belief that positive personal change happens through individual efforts with the support of others. The Society recognizes the valuable

MS connection: Spring 2013 role self-help groups play in addressing the informational, emotional and social support needs of people living with MS. There are more than 30 Connections (self-help) groups in our chapter today. For more information about Connections groups in your area, or to talk to someone about establishing a group, contact Outreach Manager Pat Thieringer at 1-800548-4611 or email pat.thieringer@nmss.org.

MS Friends Helpline The MS Friends program connects you with volunteer peer counselors who are living with MS. The common bond of living with MS creates a unique connection. MS Friends volunteers complete a rigorous screening and training program and are focused on the needs of those who call for support. Call the MS Friends helpline at 1-866-673-7436. All of your conversations are confidential to the peer relationship.

Online Peer Connections at MSconnection.org MS affects everyone differently – that’s why it is important to have someone you can count on to support you in the way that YOU need. Through the Online Peer Connections program you can search for and connect with a peer support volunteer who has “been there” and can provide you with helpful tips, suggestions and emotional support for the challenges that MS throws at you. Online Peer Connections volunteers have been through a rigorous screening and training process. Visit

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nationalmssociety.org/pae | 1-800-548-4611

MSconnection.org to get started.

No Connections Group in your Area? If there is no local Connections Support group in your area, and you’re considering joining with others to start one, we can help you. Hundreds of MS Connections support groups have started throughout the United States with the courage and initial efforts of just one person who recognized the value of creating a caring community of people “who truly understand” because they too “have been there,” and share their experiences, strengths and hopes. Our chapter is especially in need of support groups in Atlantic, Camden, Cumberland and Salem Counties in New Jersey. We also have a great need for support groups in the following Pennsylvania Counties: Berks, Carbon, Monroe and Northampton. There is also a need for groups in many Philadelphia neighborhoods including West Philadelphia, the northeast, southwest and northwest Philadelphia. We can assist you in starting a Connections Group, so the effort is not on your shoulders alone, but shared with others. Just phone us and we will lead you through the process of developing this meaningful resource in your area. Our chapter has a new leader training process that will provide you with leadership training, assistance in securing a meeting place, an entire library of educational and marketing materials, and a supportive network of experienced leaders to help your group take flight. To learn more about starting a group in your

area, contact Pat Thieringer at 1-800-548-4611 or email pat.thieringer@nmss.org.

Speaker’s Bureau Each year, the Greater Delaware Valley Chapter produces more than 100 educational programs, including teleconferences, for people living with MS. We also coordinate more than 30 support group meetings each month. In order to enrich the educational opportunities we offer our clients and local health care providers, we are currently expanding our speaker’s bureau database. This database is a collection of local and regional professionals who we may ask to speak on behalf of our chapter about various topics relating to MS. If you have knowledge that would be of interest to individuals living with MS, please join us in the movement to fight MS by volunteering to be a member of our speaker’s bureau. n

SPEAKERS ARE NEEDED

Becoming a member of our Speaker’s Bureau provides you with a chance to educate the community, grow your network and join the movement! Speaking opportunities are available at self-help group meetings, chapter programs, community events and more. To register for our speaker’s bureau, please complete an online application at nationalMSsociety.org/pae.

24 NEWLY DIAGNOSED

is it harder to work with MS?

MS connection: Spring 2013

Memory issues may impact employment

BY Julie Stachowiak, PhD

Many people with multiple sclerosis find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job.

“I am able to work more when i feel good, less when i feel bad, and take a quick nap if needed.” I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all — when even looking at the computer screen feels like torture.

I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome may already need to adjust their time at work. Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the past two years and have been on disease-modifying therapy for less than six months or not at all.

what they found: n

People with higher levels of fatigue and disability all decreased their working hours within 12 months following diagnosis.

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n

Lower long-term memory scores correlated with a lower number of hours and days spent working during the week.

n

People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”

n

Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.

While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.

Working a balance What does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.

“... so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of ms.”

On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success.

Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and MS.about.com.

tools to work If you’re struggling to keep up at work, but aren’t ready to throw in the towel just yet, visit MSWorks.org or call an MS Navigator at 1-800-344-4867 to learn more about your options and get connected with employment resources in the Greater Delaware Valley. The Job Accommodation Network at askjan.org also offers information on a range of subjects for working people with disabilities.

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MS connection: Spring 2013

Face of MS: Kathryn Pannepacker Award-winning artist Kathryn Pannepacker was in high school when she first began to notice symptoms associated with MS. She experienced lack of vision, and since then, slurred speech, problems with her gait, incredible fatigue and necrosis (the premature death of cells) in her hip, among others. But despite everything that MS has thrown at her, Kathryn remains positive and committed to helping others through her career as an artist and in her local community. It was a college weaving class that inspired Kathryn to begin a career in textiles. Shortly after graduating in the early 1990s, she travelled to California to undertake an apprenticeship with a family of textile artists. She spent three and a half years learning traditional tapestry methods, like creating a woven painting using string and yarn. She later travelled to France and Japan to study other tapestry methods, including the traditional technique of pictorial weaving with wool and cotton. It was around this time that her symptoms intensified. The vision problems that Kathryn

Kathryn Pannepacker weaves a shag on an abandoned property at front and westmoreland streets in philadelphia had experienced as a teenager had caused her doctors to question whether she may have MS. The neurological problems that she experienced during her travels helped to confirm this diagnosis of Relapsing-Remitting MS. MS has created numerous challenges for Kathryn, and has even impacted her ability to produce her artwork. One of her pupils shakes slightly, at times making it more difficult for her to focus on the fine threads that she uses to produce her work. Necrosis in her hip has meant that she has needed two surgeries. But despite this, Kathryn has never let MS get in the way of her career. Kathryn has achieved the dream that she set for herself as a young woman, to be a full time artist who doesnâ&#x20AC;&#x2122;t need to rely on part time jobs to get by. Her work can be seen across

nationalmssociety.org/pae | 1-800-548-4611

her home town of Philadelphia and has taken her to numerous countries, including Canada, Lithuania, Mexico, Poland and Turkey. She is known for using materials in metaphor. For one wall piece she used 7,000 cotton swabs. For another series, she used matches to represent “setting your heart on fire for peace,” representing flags of nations in conflict, for example the U.S. and Iraq, and Israel and Palestine. She has worked with homeless men and women in Philadelphia through the Mural Arts Program to show the meaning of home, and to help break down the stigma surrounding homelessness. She also teaches them how to weave scarfs, gain a livelihood and a sense of pride. One of her current projects is called ‘Adopt a Fence/Sponsor a Shag,’ where neglected lots are transformed when Kathryn weaves textiles through the chain link fences. Her work brings to life her philosophy of “art for all.” Kathryn’s passion for art and people extends to her local community. She has helped people living with disabilities, senior citizens, at a methadone clinic and a prison. She likes to include others in her career by hosting a party whenever she returns from a trip abroad, telling stories, showing what she created there and sharing photos. Volunteering is not just a way to give back; Kathryn says that it enriches her life, and keeps her positive and active. “It keeps me going,” she says. A few years ago, Kathryn had her first hip surgery. Although her insurance provided

27 rehab while she was in the hospital, she would not be covered after she returned home. A social worker encouraged her to contact the National MS Society. She knew about the Society through educational programs and workshops she had attended, but this was the first time she had reached out for services. Over the last few years she has received crutches, two rounds of physical therapy and bathroom modifications. According to Kathryn, “The support that I have received from the National MS Society has been remarkable. I don’t know what I would have done otherwise.” No matter what challenges she faces, Kathryn refuses to be defined by the disease. “I don’t want MS to be a big cloud hanging over my head. Everyone’s got something,” she says. “We just need to be good to each other and ourselves.” For more information about Kathryn’s work, visit kpannepacker.com. Information about the Adopt a Fence/Sponsor a Shag project is available on Facebook at facebook.com/ AdoptAFenceSponsorAShag. n

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MS connection: Spring 2013

THE GOLDEN CIRCLE

A special thank you to all of our active members The Golden Circle is a membership program acknowledging the important support of individuals who make their mark against MS by making an annual gift of $1,000 or more. Members of the Golden Circle receive unique benefits, including special research presentations, program invitations and much more.

Thank you to the following individuals and organizations for their commitment to the MS movement*: Mr. Ron Abel Abington Memorial Hospital Acorda Therapeutics Actelion Clinical Research, Inc. Mr. David Jason Adelman Mr. Dean Adler and Mrs. Susanna Lachs Adler Mr. Stephen A. Albertini Mr. Dennis Alter American Infrastructure Aqua Charitable Trust Aquahab, LP Mr. Noel Archard Steven and Stacey Asbell Asher & Company AtlantiCare Health System Automated Financial Systems, Inc. Automotive Rentals, Inc. Mr. Randall Bair Valli Baldassano and Lee Bellapigna Dr. Vincent F. Baldassano Mr. Bill Bankes Dr. and Mrs. Allen Bar Barretta Tile and Stone, Inc. Mr. and Mrs. Herbert Bass Mr. Russell J. Batdorf Bayada Nurses Mr. Daniel Beaty Mr. John Begier

Behringer Harvard Operating Partnership LLP Bell Nursey USA, LLC Ms. Nancy Belser Mr. and Mrs. Jay Benner Bentley Systems, Inc. John Bereschak, III, CPA & Maria LoCasale Bereschak Berkadia Commercial Mortgage LLC Mr. John Berry Mr. Michael and Mrs. Tara Betsch Biddle Insurance Services, Inc. Ms. Lynn Biehn Mr. Edward Black Mr. John Blakeley Mr. Arthur Block Blueyes Foundation BNY Wealth Management Bohler Engineering Inc. Mr. Joseph N. Bollendorf Miss Yolan M. Bordner Mrs. Elizabeth A. Borst Bottinoâ&#x20AC;&#x2122;s Supermarkets Mr. and Mrs. Karl Bowers Mrs. Shelley Boyce Mr. Andrew Boyle Brandywine Realty Trust Brass Holdings LLC Ms. Jayne A. Bray Mr. Robert J. Bray Ms. Adean Bridges Mr. Rich Brome The Bronstein Family Ms. Susan Brooks Mr. David and Mrs. Caryn Bross

Mrs. Melissa M. Brown Dr. Raymond Bruno Bryn Mawr Hospital Mrs. J. Mahlon Buck, Jr. Mr. and Mrs. William C. Buck Mrs. Krista Buerger Mr. William Bujalos Mr. and Mrs. Len Burkart Mr. John R. Burke, Jr. Mr. and Mrs. David M. Burns Mr. John Charles Butts Ms. Alison Byers, PsyD Ms. Tami Caesar and Mr. Steve Karlovic Mr. John F. Campbell Canada Dry Delaware Valley Bottling Company Canon Business Solutions Canon Financial Services, Inc. Ms. Lisa Canonico Caron Treatment Centers Carpenter Technology Corporation CDI International Inc. Mr. Christopher and Ms. Arbella Cherkis Christenson Investment Partners Christine McCafferty Community Emergency Fund Clayman Family Foundation CME Benefits Consulting Abbi L. Cohen, Esq. Nate and Terri Cohen Coloplast Comcast Corporation Comcast Spectacor Charities Conrail Miss Marlene Conway

nationalmssociety.org/pae | 1-800-548-4611 Ms. Carol Ann Corcoran Mr. Robert J. Corrigan Corvette Enthusiasts Community Foundation Mr. Michael Coslov Cozen O’Connor Foundation, Inc. Crayola Creative Financial Group, LTD Mr. David Cutler Mr. Milton Cutler CVS Caremark Mr. Americo Da Corte Dacey’s Pub Dantino Inc. dba Martino Giovanni & Pileggi The Darragh Family Daughters of Penelope Nike Chapter #230 Ms. Adah Davis Loretto Davis Day & Zimmerman, Inc. Mr. Nicholas J. DeBenedictis Mr. Richard C. Rizzo Mrs. Michele Del Collo The Delellis Family Mr. and Mrs. Roger J. Dennis Ms. Barbara Helen Deptula Mr. and Mrs. Brian DiDonato Mrs. Rosemary and Ms. Kathryn Diederich Dimension Data Diversified Search, LLC Ms. Noreen C. Doyle Mr. William N. Drury Ms. Dorothy G. Dwyer Dynamic Images Inc. Mr. Robert B. D’Zuro In memory of Edward J. Goodman Mr. Joseph Edwards E-Finity Distributed Generation, LLC Dr. Howard Eisenberg and Ms. Susan Sandler Embassy Bank EMD Serono, Inc. Emerson Group

Mr. Emmanuel and Ms. Gabrielle Emore ERT (eResearch Technology Inc.) Mr. David and Mrs. Perri Evanson Exley’s Landscape Service, Inc. Mr. and Mrs. Terry Fadem Mr. Ritson Ferguson Mrs. Mary M. Field First Savings Community Foundation Firstrust Bank Mr. Frank Floczak, III Ms. Carol Flynn Mr. Bryan and Mrs. Michele Foulke Fox Rothschild LLP Frank C. Videon, Inc. Franklin Square Holdings LP Mr. Joseph and Mrs. Amy Frick Mr. Gabriel Gant Garbose Family Foundation Mr. Jose Garces Mrs. Cynthia J. Garlit Mr. Paul H. Garnier Mr. Leonard J. Gatti Ms. Monica M. Gaudiosi Mr. Garrett L. Gee GenOn Energy Gerald B. Shreiber Foundation Mr. and Mrs. David Gerson Genzyme, a Sanofi company Mr. Mario and Mrs. Pamela Giannini Ms. Pam Gifford The Hon. Barbara and Mr. Alan Gilbert Ms. Mary Ann Gindlesperger Giorgio Foods, Inc. Mr. and Mrs. Jonathan Gispan Globus Medical, Inc. The Gougler Family Mr. Kurt Daniel Graff Ms. Carole Gravagno Greater Cape May Elks Lodge Greater Philadelphia Chamber of Commerce Greater Philadelphia Tourism Marketing Corporation Jay and Dale Gress, II Drs. Kent and Lori Griswold

29 Drs. Harry and Ilene Grossman Mr. Navin and Dr. Renu Gupta Haddon House Food Products Ian and Caryn Harris The Hassinger Family Bob and Irene Haver Fund Ms. Anne Hawkins Mr. Daniel and Mrs. Cynthia Hayes Mr. John Heil Mrs. Christa M. Held Henkels & McCoy, Inc. Ms. Diane M. Hermann Ms. Elizabeth A. Hinkle Mr. and Mrs. Tom Hinton Mr. Keith and Mrs. Susan Hodge Holman Automotive Group, Inc. Dr. and Mrs. Bruce D. Hopper Horizon Services, Inc. Mr. Brian B. Huber I.B.E.W. Local Union 98 Image First Uniform Rental Services, Inc. Ms. Maria A. Incudine Independence Blue Cross International Union of Elevator Constructors Local 5 Marianne Jackson and Shawn Kelly Janney Montgomery Scott LLC Ms. Ellen B. Johnson Mr. Ron W. Johnson David Johnston Dr. Janet K. Johnston Joseph F. McHugh Agency, Inc. Mr. and Mrs. Richard Josephs Mr. Ted Kaminer Ms. Sally Lyn Katz Mr. Sol Katz The Kauffman Family Mr. and Mrs. Mitchell Kaye Mr. and Mrs. Robert E. Keith, Jr. Mr. Anthony S. Keller Mr. Robert N. Kennedy Ms. Patricia E. Kerr Keystone Industries Keystone Mercy Health Plan Kildare Capital, Inc.

30 Mr. Kevin and Mrs. Cynthia King Paul and Susan Kinmartin Kiwanis Club of Burlington The Klein Family Kohl’s Bradley and Pamela Korman KPMG LLP Eric Kraeutler, Esq. Mr. Jonathan G. Kraus Mr. Bradley A. Krouse Ms. Patricia Kubiak Mrs. Colleen Renee Kucharczuk Mr. Charles D. Kurtzman La Belle Fit Spa Inc. Laborers’ Local Union 57 Ms. Phyllis Lagerman Mr. Michael and Dr. Jennifer Lambert Mr. and Mrs. Charles Lambiase Langhorne Rod & Gun Club, Inc. Mr. Frank Langley Law Office of Jamie R. Hall The Leaders Edge / Leaders By Design Mrs. Ella S. Lee Mrs. Margie Lefcoe-McClennen Lehigh Valley Health Network Mr. Stanley John Lesniak Mr. Brett Levin Ms. Justine F. Lien Mr. Michael Lindsay Mr. Edward Lipkin The Loftus Family Mr. and Mrs. Peter S. Longstreth Ms. Daniela LoPresti Mr. Ira M. Lubert Mr. Robert Joseph Lucci Mr. John Lyons Mrs. Helen T. Madeira Mr. John J. Maguire Mr. Mike A. Maguire Honorable Nicholas J. Maiale Mrs. Beth A. Malikowski Mr. Joe Mallon Dr. Julian M. Maressa Mr. and Mrs. Andrew Marshall Dr. Bronwyn L. Martin

MS connection: Spring 2013 Maryanne Christopher Salon Spa Mr. and Mrs. Leonard Mayo Mrs. Jessica and Ms. Shirley Mazur Ms. Linda J. McAleer and Mr. Maitlon Russell Ms. Dea M. McAlonan Mr. William and Mrs. Trisha McCain Mr. George B. McClennen, II Ms. Marisa McCormick Ms. Merideth A. Mcdowell Mrs. Kristina McGraw Mr. Richard McMahon Mr. Bernie and Mrs. Kathleen McNamee The McNamee Family Mr. Brian McVeigh Merck Sharp & Dohme Metro Public Adjustment, Inc. Mr. Adam Milberg MileStone Bank Miletos Group LLC Mr. Richard and Mrs. Harriet Millan Mr. John and Mrs. Josette Miller Mrs. Lenore Millhollen Mr. Robert Moatz and Mrs. Lisa Yanolko-Moatz William Monahan Mrs. Robert Moorer Mr. Joseph J. Mucerino, Sr. Mr. James L. Murray, Esq. Ms. Julie Anne Natale Fenton Navar Applied Sciences Corporation Neubauer Family Foundation NHS Human Services Mr. Dale and Mrs. Betsy Nice Mr. Philip and Mrs. Carole Norcross NovaCare Outpatient Rehabilitation Novartis Pharmaceuticals Novick Brothers Corporation Mr. and Mrs. Gary Novick Mr. James O’Brien Mr. and Mrs. Patrick O’Hare Mr. B. and Mrs. Elizabeth Owens PA Power & Light Parkway Corporation

Passion Vines Wine & Spirit Company Trena L. Pelham, MD Penn Jersey Paper Co. Pepper Hamilton, LLP Mrs. Michele Perez Mr. and Mrs. Jeff Petty Mr. Larry and Mrs. Charlene Pezzato Mr. Rajan S. Phanda Miss Pamela M. Phelan Philadelphia Eagles Philadelphia Electric Company Philadelphia Electrical Equipment Co. Philadelphia Phillies Ms. Carolyn A. Piccone The Pickard Family Mr. Albert N. Pickles III Robin Liskoski-Piree PJM Interconnection Mr. Jim Plousis PMB Rotary Miss Julie Lynn Poeschel Mr. Daniel and Mrs. Margo Polett Ms. Kelly Possinger Ms. Jessica Brooke Postupack Preferred Sands PREIT (PA Real Estate Investment Trust) Mr. and Mrs. David Pressel Mr. and Mrs. Marshall Prince Professional Capital Services LLC (PCS) Mr. and Mrs. Donald Pusey Mr. Frank G. Quarto Questcor Pharmaceuticals QVC, Inc. Radian The Rainey Family Rancocas Anesthesiology, P.A. Ransome Cat Dr. Eric and Mrs. Kim Ratner The Raudenbush Family Red Robin Mr. and Mrs. Gene Reid Reilly, Janiczek, McDevitt P.C. Reuben and Mollie Gordon Foundation Mr. Scott and Mrs. Roberta Richard Mr. John Richmond

nationalmssociety.org/pae | 1-800-548-4611 Ride-Away Handicap Equipment Corporation Mr. Charles and Mrs. Melissa Roberts Mr. and Mrs. Jeffrey Roes Mr. Charles A. Rowland Ms. Jennifer L. Rozo Mr. and Mrs. Robert Rubin Mr. Frank Rugienius Ms. Linda J. McAleer and Mr. Maitlon Russell Frank C. Sabatino, Esq. Mrs. Kelly J. Sabold Mr. Michael Salin Saul Ewing, LLP Mr. Randall and Mrs. Nora Schenk Ms. Peggy Scheule Mr. Timothy Scheve Mrs. Brenda R. Schuck Mr. Christopher M. Scofield Mr. Robert W. Seckinger SEI Investments The Sergent Family Seymore and Helen Ann Rubin Foundation Shannon Outdoor Advertising Inc. Dr. Edward and Mrs. Clare Sheehan Ms. Molly D. Shepard and Mr. Peter J. Dean The Sheroff Family Shire Us Inc. (Shire Pharmaceuticals) Shore Memorial Hospital Mr. Robert J. Shrader Signature HVAC, Inc. Mr. Daniel B. Silverberg Mr. John Skelnik SKF USA, Inc. Smith Mack & Company, Inc. Mr. Al Smith Mr. Gregory L. Smith The Smith Family SmitHahn Company, Inc. Ms. Diane Snowden Dr. Randall William Snyder III Mr. Edward J. Solomon South Jersey Federal Credit Union

Mr. and Mrs. Robert Spires St. Lukeâ&#x20AC;&#x2122;s Hospital & Health Network Ms. Elizabeth Stewart Mr. Mark Stielow Mr. Sean and Mrs. Carolyn Stonelake Ed and Linda Streb Mr. Frank Striffling and Dr. Carla Narducci Subaru of America Foundation, Inc. Suelle Corporation Mrs. Jacalyn M. Sullivan Sun Federal Mr. and Mrs. David Swingle Sykora Family Charitable Foundation T.W. Cooper Insurance Mr. and Mrs. John Talese Dr. Chris A. Teleha Mr. Marc and Mrs. Kathleen Tellier Temple University School of Medicine Mr. Bruce E. Terker Teva Pharmaceuticals Mr. & Mrs. John Thalheimer The Air Products Foundation The Argus Fund The Frederick H. Bedford Jr. & Margaret S. Bedford Charitable Foundation The Herman and Jerry Finkelstein Foundation The Jennie Perelman Foundation, Inc. The John and Robin Burch Family Fund The John F. Scarpa Foundation The Karen and Herbert Lotman Foundation The Keller Family Charitable Trust The Portmann Family Charitable Fund The Union League of Philadelphia Ms. Dolores Thomas Titan Disposal Toll Bros Inc. Tozour Family Foundation Traci Lynn Jewelry Traffic Planning & Design, Inc. The Traviline Family Ms. Susan Tressider

31 Mr. and Mrs. Stephen Tullman Mr. Eric Tweer Laura Grossi-Tyson and Jeffrey Tyson UGI Corporation United Security Assurance Inc. University of Pennsylvania University of Pennsylvania Health System UPS V&S Pizzeria Renaat and Daisy Van den Hooff Mr. Edward Varley Mr. Jeff and Mrs. Peggy Vaughan VCI Mobility Mr. and Mrs. Tinkham Veale Mr. Richard and Mrs. Johnette Venne Mr. Gerald P. Verbrugghe Viropharma Incorporated Mr. John and Mrs. Heather Volpe Vynamic W.W. Smith Charitable Trust Mr. Michael S. Warner Mr. Thomas E. Wartenberg The Weber Family Mr. Paul and Mrs. Marilyn Weintraub Ms. LeaAnne Welsh Mr. Andrew Whelan Mr. Fred G. White The Whitmire Family Ms. Liz Wideman Dr. Sankey and Ms. Constance Williams Mr. Peter F. Wolf Ms. Jacquie O. Young Mr. and Mrs. Benjamin Zuckerman

* This list reflects donors from the start of our campaign in January 2012 through December 2012. Our apologies for any inadvertent errors or omissions. n

Free Matter for the Blind or Handicapped

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

1 800 548 4611

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June 8 & 9, 2013

This course doesnâ&#x20AC;&#x2122;t muck around.

This event is an unforgettable two days of fun in the great outdoors featuring a muck-filled obstacle course for teams to slosh, slip and slide through while helping to create a world free of MS.

REGISTER NOW:

MuckFestMS.com


MSConnection 2013 Issue 2