Spring 2013 Greater Delaware Valley Chapter MSConnection 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 Twice- daily Tecfidera was shown in clinical trials to significantly reduce relapses and CONTINUED ON PAGE 5 INSIDE 10 11 16 22 26 But You Fired for MS is not Connection Face of THIS Look So having MS: who I am — GrouP — MS: Kathryn Good — Jane Gagliardo’s Igor Getting You PannepacKer ISSUE Latoya Ross story St. Phard Connected 02 MS connection: Spring 2013

National Multiple Sclerosis Society Greater Delaware Valley Chapter local events 30 South 17th Street, Suite 800 To register for these or other , PA 19103 1-800-548-4611 events, visit calendarMS.org. Chair: Marianne Jackson May 11 New Horizons: Latest in Research, Vice Chairs: Valli Baldassano, Larry Kane Treatments & Resources, Reading, PA President: Tami Caesar Vice President, Client Services, Communications May 14 LINKS teleconference: Minimizing And Operations: Kevin Moffitt Your Risk of Falls Editor: Yarissa Reyes May 21 LINKS teleconference: Healthy Living ©2013 National Multiple Sclerosis Society, with MS: Diet & Nutrition Greater Delaware Valley Chapter May 28 LINKS teleconference: Clinical Trials Information provided by the Society is based & Progress in MS upon professional advice, published experi- ence and expert opinion. Information provided May 29 An Evening at the Devon Horse Show in response to questions does not constitute & Country Fair, Devon, PA therapeutic recommendations or prescriptions. June 8 & 9 MuckFest MS, Newtown Square, PA The National Multiple Sclerosis Society recom- mends that all questions and information be June 20 MS Family Night with the Reading discussed with a personal physician. Fightin’ Phils The Society does not endorse products, servic- es or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability Connect with us online: for the use or contents of any product or ser- nationalMSsociety.org/pae n [email protected] vice mentioned. MSConnection welcomes letters to the editor. Like us: facebook.com/greaterdelMS Send letters to [email protected] or the address Follow us: twitter.com/greaterdelMS above. Include your name and a phone number or email where we can reach you, if necessary. Watch us: youtube.com/nmsspae NOTE: we may edit your letter for length and Pin us: pinterest.com/greaterdelvalMS content. nationalmssociety.org/pae | 1-800-548-4611 03

Letter from the president remitting MS developed progressive MS within 10 years. Long-term data are not yet available to determine if treatment significantly delays this LOOKING FOR PROGRESS transition. ON PROGRESSIVE MS The stark realities and continued lack of treatment options for progressive MS have As the cover led the Society to lead the formation of the story suggests, International Progressive MS Collaborative. In there is much the first meeting held earlier this year, more than cause for 170 MS researchers and clinicians from around optimism the world gathered to discuss key challenges and in the MS strategies to accelerate treatments for progressive community. forms of MS. With the approval of Leading experts across all the major research a third oral areas set priorities for moving forward. They Tami caesar, president treatment, talked about the potential of repurposing and the tenth treatments for other diseases; the need for faster FDA-approved medication for relapsing forms and more economical clinical trial to of MS overall, we can again take pride in the speed research; the potential impact of symptom strides we are making on behalf of people living management/exercise programs and much more. with MS. In addition, we are thrilled we have While a meeting is not a new treatment, it raised the necessary monies to fully fund the is a beginning. And just as everyone who is vitamin D clinical trial aimed at stopping disease raising money for Walk MS, MuckFest MS progression (see page 13 for more information). and Bike MS has a hand in the latest treatment However we are mindful that as people with developments, you are also playing an essential relapsing forms of MS are given more choices, role in bringing some of the best researchers in people living with progressive MS – a group that the world to find ways to treat the most serious may include over 100,000 Americans – are still and destructive form of the disease. This progress waiting for news on the approval for the very is something we can all be proud of as we work first treatment that will slow progression or, for together to make 2013 our most successful year that matter, reverse it. ever. I want to assure everyone in the MS community Sincerely, that progressive MS is something we at the Society take extremely seriously. Before the disease-modifying medications became available, Tami Caesar, President approximately 50% of people with relapsing- 04 MS connection: Spring 2013

the central nervous system at protecting the nervous among academic drug system from MS damage. Research discovery centers to maximize their potential and accelerate Society-supported BRIEFS drug discovery efforts within the neuroscience community. studies point to National MS Society possibility that joins collaborative Researchers report dietary salt may effort to identify and on brain imaging to stimulate activity speed development detect tissue damage of key immune cells of nerve-protecting associated with involved in MS drugs cognitive impairment attacks The Alzheimer’s Drug in MS – may help Three studies by collaborators Discovery Foundation, at Yale, Harvard and MIT/ Beyond Batten Disease determine benefits of Broad Institute suggest that Foundation and the National treatments dietary salt can speed the MS Society announced a Researchers from The development of an MS-like funding collaboration to Netherlands report that disease in mice, and provide support the creation of the they were able to distinguish new insights on immune Collaborative CNS Screening between people with system activity involved in Initiative (CCSI), a central MS who had cognitive MS. While more research repository of chemical impairment (such as memory needs to be done to confirm compounds that have shown and concentration problems) a role for salt in triggering significant central nervous and those who did not, MS, or to determine whether system activity. The idea is based on brain scans using reducing salt can inhibit to share data and speed the a specific type of imaging MS immune attacks, these development of new therapies (DTI, or diffusion tensor studies pinpoint new avenues that may protect the brain imaging). The study suggests for strategies that can from damage. Led by the that loss of nerve-insulating decrease MS attacks. n Harvard NeuroDiscovery myelin, more than the loss Center’s Laboratory of nerve cells, may be a key More research for Drug Discovery in factor in cognitive problems, Visit us online at Neurodegeneration, the and supports the approach nationalMSsociety.org/pae CCSI will share emerging of using DTI as one way to stay on top of the latest compounds with the to measure the impact of MS research. potential to treat diseases of potential therapies aimed nationalmssociety.org/pae | 1-800-548-4611 05

CONTINUED FROM COVER (within 6 months) blood cell count, and repeat the blood cell count annually thereafter. disease activity on MRIs, and in one trial it Before starting treatment with Tecfidera, reduced progression of disability. The FDA’s women should talk to their health care approval was based largely on results of two providers if they are pregnant or planning to large-scale phase III studies of Tecfidera become pregnant. capsules, which were conducted in people with relapsing-remitting MS. The results were Taking a disease-modifying therapy is published in 2012 and showed that it reduced currently the best way to reduce MS disease risk of relapse by as much as 49%. activity. Selecting an MS therapy should be done in collaboration with an MS specialist. Common adverse events experienced by To find a neurologist in your area, call people taking Tecfidera include flushing and 1-800-FIGHT-MS. n gastrointestinal events issues. Before starting treatment, the FDA recommends that a person’s health care provider assess a recent DID YOU 2012 KNOW? SPRING SUMMER

More than 4,400 local people living with MS have made a donation to

the Society or have raised money by City to Shore taking part in one of our fundraising Ride 2012 events since 2010. Make 2013 your year to participate in one of these great events! FALL YEAR-ROUND 06 MS connection: Spring 2013

SPRING 2013 INTERNS CHAPTER < Aubrey Bellezza, Marketing > < Amy Bendekovits, Development > WELCOMES NEW < Jacqueline Bene, Development > < Kaitlyn Bennett, Marketing > INTERNS < Lindsay Deal, Marketing >

From advocacy and community outreach to < Cassandra Dramis, Community Outreach > marketing and development, these 19 interns < Mary Caitlin Dugary, Marketing > are making their mark against MS this spring < Natasha Friend, Community Outreach > semester. These students, seeking a challenge < Ninilola Jegede, Community Outreach > and the opportunity to further their college experience, support chapter staff in planning, < Margaret Katana, Advocacy > cultivating, marketing and other duties that < Erin Kennedy, Development > provide them with lasting skills and contribute < Colleen Kobol, Community Outreach > to the success of the chapter. < Allison Leyh, Development > If you or someone you know is interested in < Jessica Milinichik, Advocacy > our internship program, please contact Joy McManus at 1-800-548-4611 or email < Carly Mitchell, Development > [email protected]. n < Marissa Paesano, Advocacy > < Aimee Ralph, Community Outreach > < Samantha Siciliano, Development > < Lauren Spires, Development > nationalmssociety.org/pae | 1-800-548-4611 07

Fundraising number of people who just knew someone with MS. In its first year, the outing brought Annual Metro in $14,000. The golf outing has turned out to be an event not only for our employees to enjoy, Drive for MS but a cause to help give something back to DIY FUNDRAISING EVENT the community. In its second year, the event brought in $22,000, almost doubling the first year. How did that happen? The real By Barbara Clark, event organizer secret is that everyone wanted to be a part of it. We became smarter and started earlier in Our son Spike was diagnosed with MS in seeking out sponsors and the like. 2009 at the age of 20. Needless to say, Walt and I were devastated. Like all parents, we The kickoff for the fall 2013 outing, now want to fix things for our children, and I becoming a wonderful tradition, will take want things fixed NOW. place again this May. Finding out there is not a cure for MS For more information on the outing, please did not sit well with us, it simply was not contact Barbara Clark at 267-525-0272 or at acceptable. [email protected]. 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 08 MS connection: Spring 2013

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

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 nationalmssociety.org/pae | 1-800-548-4611 9

with the chance to see how other couples Young experience and manage with this disease. In a slightly non-traditional twist on support groups, half of our meetings are at bars or Couples restaurants that provide an upbeat and fun atmosphere. These casual meetings are on Connections the third Tuesday of every-other month at 6:30 p.m. and since the location changes frequently, please see our Facebook page for Group details (search for Philadelphia MS Young Couples on Facebook). By Michael Black-Smith The other half of our meetings take a more traditional format. These meetings are held As my wife and I were starting to cope on the fourth Saturday of every-other month with an aggressive disease onset in 2009, at 10 a.m. at Magee Rehab Hospital, 1513 we turned to a number of sources for help Race Street, Philadelphia. understanding the “how’s,” “when’s” and “why’s” of my multiple sclerosis. Among For more information about this and other these resources were the support groups Connections groups, please contact Pat available through the Society. However, Thieringer at 1-800-548-4611 or email n helpful as they all were, we still felt the [email protected]. 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 Young couples support group 10 MS connection: Spring 2013 But you look Latoya Ross 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 came out fine but the MRI showed lesions on diagnosis. “Even the nurses tell me, ‘But you my brain.” A second opinion confirmed the are walking fine.’” diagnosis. Diagnosed at age 20 with relapsing-remitting “I had no idea about MS. I had heard Montel MS, Latoya began experiencing numbness Williams had MS, but I didn’t know anything on the left side of her face and left arm. She about it. I cried when the doctor told me I was off-balanced and had trouble forming had MS. You don’t think it can happen to you. or responding to questions. “I knew what I I was so young.” wanted to say, but the words wouldn’t come out.” An MS diagnosis meant many changes for Latoya’s future plans. Latoya came from a One day as Latoya headed out to pick up long line of military men and women. She her paycheck she almost stumbled down the wanted to join the Navy and travel around the stairs at her subway stop. “I was so naïve to world. “I was planning on joining the Navy. the symptoms. I kept thinking it was because I was studying for the entrance examination I was working too much and trying to go to and was getting ready to take the test. I was school. I felt tired all the time.” devastated.” That same night after attending a Phillies Latoya decided to look at this set back as an game with her cousin, she began feeling opportunity. “My aunt who raised me used worse. “I phoned my friend and told her how to tell me that no matter what situation you I was feeling. She said to call an ambulance are in, there are always people who have it but I just thought if I lay down I would feel worse than you. Through it all, I thank God better.” Latoya woke up in the middle of because I’m still blessed despite my MS. It has night panicked thinking “something’s not made me stronger. Life looks different. There’s right,” and called 9-1-1. The ambulance took people who can’t see, smell, hear… I am able her to Lankenau Hospital where they did to walk, cook and remain independent.” a CAT scan and an MRI. “The CAT scan nationalmssociety.org/pae | 1-800-548-4611 11

“MS is tricky. One minute you feel like you’re on top of the world and the next Fired for minute you feel like a ton of bricks hit you. But I’ve learned to listen to my having MS body. I don’t ignore my symptoms any- more. If I’m not feeling well I call the jane gagliardo’s story doctor right away.” When Jane Gagliardo was fired from her job A recent MRI showed more lesions for Latoya in 1996, she knew it was who takes glatiramer acetate (Copaxone) to because of her multiple slow disease-progression. A new monthly shot sclerosis. Her manager of methylprednisolone (Solu-Medrol) has had been openly uncomfortable with her been prescribed for her acute exacerbations. disease and was reluctant to allow reasonable “I am thankful I can still get around. I like to accommodations at work. Jane is the cook, clean and do things on my own.” While inspiration for a new book out this spring a friend has offered to accompany Latoya titled “Call to Witness,” the extraordinary on her doctor’s appointments and take her and empowering story of a woman who grocery shopping, she feels like she can do it stood up for what she believed in, even when all by herself. “I like to take advantage that I it meant standing alone. am still able to do it.” Shortly after she was diagnosed in the late “Life is precious. Take it one day at a time. 1980s, Jane joined a large pharmaceutical Don’t take life for granted.” company as an entry clerk. She enjoyed Although Latoya worries what her future may her job and got along well with all of her hold, she says it’s all in God’s hands. “I worry colleagues. Jane performed well and her about being pregnant one day. What if I have career progressed over time. “I planned to a flare up and can’t hold my baby in my arms? stay there for the rest of my career,” she said. But it’s not up to me. Whatever God’s plan for Everything changed when a new manager me is – it’s in His hands.” was appointed in 1996. Around this time, Latoya volunteers at the chapter office her company’s main office building was being whenever possible and tells us, “If the day renovated, which meant that Jane and her comes when I can’t come in to the office team were placed in a temporary structure. anymore, I want you to mail me the stuff so I It was during the summer months and, like can do it from home. I want to help. I like to many other people living with MS, Jane help people.” n found it difficult to cope with the heat. “It 12 MS connection: Spring 2013

was like being in a sauna,” she said. Jane make a long commute every day to work for shared her diagnosis with her manager to a friend’s telemarketing company. explain why she needed air conditioning. She was then asked for a letter from her doctor confirming her diagnosis. Although her What they did was wrong. I knew I request for air conditioning was granted, her needed to make my voice known relationship with her manager became more difficult. The judge decided that her dismissal had Jane’s workload began to increase to the violated the ADA. It was a landmark case point that it was unmanageable. Although because memory and concentration were not she had always performed well, she began to previously on the ADA list of life functions. struggle with the unrealistic demands that Jane was awarded more than $2 million, were placed on her. She spoke to her manager a portion of which she has given for MS and the human resources department, but research. her workload remained the same. Instead of Jane faced challenges from her MS. She has helping her, Jane’s manager accused her of had exacerbations and blindness in one eye. performance issues and gave her a series of She suffers tremors and spasms. One of the negative reviews. Eventually, she was fired. biggest challenges she has faced has been At first her employer tried to offer Jane a uncertainty. “Every day is a mystery with severance package to compensate for the 10 this disease. You just don’t know what you’re years she had worked for the company, but going to wake up to.” Jane refused to sign the papers, believing she had been wrongly terminated. Through it all, Jane has never despaired. “I choose to focus on my blessings,” she Jane was devastated. She didn’t know what said. “I have a great family. I feel blessed she was going to do without her income, that I do not have a progressive form of and without the job she had once loved. the disease.” She chooses not to fixate on She knew that her dismissal was unjustified, the discrimination she suffered, or on how but she didn’t know what she could do her colleagues continue to run in the other about it. She was unfamiliar with the direction when they see her, she assumes out Americans with Disabilities Act (ADA) of fear of losing their jobs. and the rights that she was entitled to until she met attorney Patrick Reilly. But Reilly Jane is an active member of support groups was reluctant to take on the discrimination in her local area. She is a certified counselor case since the ADA was so new, with few for abused women. She finds strength in legal interpretations. In the meantime, Jane helping others and encourages everyone struggled to find a new job and was forced to she meets to focus on the positive: “I like nationalmssociety.org/pae | 1-800-548-4611 13

helping people. We Blackman, a Presbyterian minister, and empower each other published by Broad Street Press of Monroe to face whatever we County. It is currently available on Amazon need to face and and at local bookstores. A percentage of the go on.” She also proceeds from this book will go to support encourages people MS research. For more information about who are living issues around employment and MS, please with a disability visit MSWorks.org or contact Christina and working to Forster, the chapter’s Employment Services be aware of their Manager at [email protected]. n 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. MSWORKS “Call to Witness” is written by Sherry

MS will receive high-dose or low-dose oral vitamin D in addition to glatiramer Vitamin D acetate (Copaxone). Patients will be evaluated for two years, and the effect of research clinical high-dose vitamin D supplementation on the rate of MS attacks and on the number of new lesions and change in brain trial update volume on MRI will be determined. If the study shows that vitamin D supplements We’re happy to report we’ve reached our reduce disease activity in MS, it is goal of raising $1.3 million to support possible that patients with MS will be a clinical trial aimed at determining given vitamin D in addition to the MS if taking high doses of vitamin D can medication they are on. This clinical trial reduce the frequency of MS attacks is currently recruiting patients. For more and whether they are a safe addition to information, visit clinicaltrials.gov/ct2/ standard MS therapies. In this clinical show/NCT01490502. n trial, patients with relapsing-remitting 14 MS connection: Spring 2013

Lisa felt as though she had finally discovered the cause of her symptoms. She refused to let MS or 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 not MS? only a few months after her initial diagnosis, she received the most surprising news of her That is the life when the doctor revealed that the lesion no longer existed. Her MS diagnosis had been overturned. question. For the next three years Lisa lived her life as though she was free of MS – playing pool In 1998, Lisa Krauss experienced the first and biking – but knew something was not symptoms of what would become MS, but she right. “There were days when I would bike brushed them off. An avid bike rider, Lisa did close to 20 miles and others I struggled to not see anything wrong with having muscle walk up my steps to the house,” said Lisa. spasms here and there. By 2008, Lisa struggled In 2011, Lisa made the decision to visit a with the severity of her spasms and headaches. neurologist at Jefferson Hospital and after “The muscle spasms really started to take a explaining her symptoms, received an MRI. toll on my body,” she said. They became so The MRI revealed four lesions on her spinal severe that her doctor recommended she see cord and MS reentered Lisa’s life. Unsure an osteopath. Unable to establish a cause, she of the diagnosis from Jefferson, she went went on to receive an MRI which revealed a to the University of Pennsylvania for a lesion on her spinal cord. second opinion that also exposed the lesions, Lisa Krauss 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.’ nationalmssociety.org/pae | 1-800-548-4611 15

always numb; going up stairs is a real struggle and is now my biggest concern.” 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. However, at night, Lisa struggles to fall asleep “Look at all of your options; don’t rule out because she experiences intense numbness anything and especially don’t get down on and tingling in her legs and feet. “My feet are 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 [email protected] or calling 1-800-883-WALK. 16 MS connection: Spring 2013

priority. Around Thanksgiving the symptoms worsened and Igor started to experience MS IS NOT numbness in his heels. His primary doctor ordered a cortisone shot and with no positive WHO I AM result, recommended Igor visit a neurologist under the suspicion his symptoms alluded to an autoimmune disease. The neurologist Contributors: ordered a standard MRI which revealed Aimee Ralph and that Igor, in fact, had lesions on his brain Aubrey Belleza indicative of multiple sclerosis.

Yardley, Pa. resident Igor St. Phard has To confirm the diagnosis, Igor sought committed himself to not allowing MS to a second opinion at the Hospital of the bring him down. “This is not who I am, University of Pennsylvania. With this and not who I am going to become.” information, Igor began his battle with relapsing-remitting MS. Unsure of the complexity and unpredictability of MS, Igor The diagnosis experienced emotional uncertainty about his future and of the impact MS would have Prior to his diagnosis, Igor, 42, was an athlete over his daily life. who had been working vehemently on a dream of launching his own line of organic sports drinks. In 2008, following the death Medications of his mother and oldest daughter, Igor felt as though his life was on a downward spiral MS took a major toll on Igor’s body in a culminating with the economic downturn very short time. His neurologist ordered impacting the success of his new business an immediate start to treatment with endeavor. For the first time in his life, Igor’s interferon beta-1a (Avonex); however, he positivity faltered to a point where his days saw little change in the symptoms of his were filled with feelings of sadness and MS and experienced unbearable side effects. depression. The doctor switched Igor’s medication to glatiramer acetate (Copaxone) which reduced As he attempted to reconcile the challenges the side effects immensely, but did not help in his life, overwhelming emotions began with the progression of Igor’s MS. The oral to affect his body with what appeared to be drug, fingolimod (Gilenya), proved to be symptoms of Crohn’s Disease. Igor faced most effective in slowing Igor’s progressive what he believed was a herniated disk and symptoms with minimal side effects. To his daily exercise routine was no longer a date, Igor takes diazepam (Valium) to assist nationalmssociety.org/pae | 1-800-548-4611 17

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 drug- regimen 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 for their children Mahailia (14), Sabrina diagnosis. Igor uses a stationary bike on a (12), Aidan (12) and Allegra (2). “My family daily basis to maintain movement in his has been a very strong support system,” says legs, as well as performing light abdominal Igor. They are still processing that he is not exercises and occasional upper body the same dad they had before who could strengthening with a pull up bar. In addition run, jump, and chase them around, but his to improved mobility and noticeable physical care and compassion for their needs remains changes, he stated that exercise has become evident. Igor cooks meals for his children ‘one of his partners’ in his battle against while his wife is away. Although difficult at MS. Igor stated that a personal goal of his is times, Igor’s passion for cooking stems from to complete a MuckFest MS course but he his belief that his children should have access realizes that his body will need to be paced in to healthy food choices. He lines up all the order to prevent injury. 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 Family for half of Igor’s care, with the other half Igor’s MS diagnosis has meant major comprised of his dedication to Allegra, lifestyle changes for both his and his family’s who has been diagnosed with Down lives. Familial support has aided in his syndrome. Looking after Allegra every day fight against MS especially since his wife, is challenging; however Igor is thankful for Raphaelle, spends three to four days a week the opportunity to spend quality time with away as an international flight attendant. her. Caring for his daughter is a struggle As a result, Igor has taken on the role as the due to his restricted mobility and fatigue, a primary family caregiver while Raphaelle common symptom of MS. Allegra visits an travels between the U.S., Japan and China occupational therapist, as well as a physical throughout the week. At home, Igor cares therapist, but Igor hopes for additional access 18 MS connection: Spring 2013

to resources to manage her care. While it Society support has not been easy for the family to adapt to the changes, they have remained strong Following the advice of his neurologist, Igor for him. He and his family are faith-driven phoned the National MS Society and has been and their church has helped immensely to working with MS Navigator Evan Marcus of accommodate their needs. the Greater Delaware Valley Chapter. “Evan has been phenomenal. The Society helped me with food cards for groceries and some Motivation and advice monetary support. They also helped me get counseling services for my wife and me.” Regardless of how much Igor exercises, he believes the strongest muscle in the body is “You’re not by yourself in this. Anyone the brain and positivity is essential. “One recently diagnosed should make the call just thing I’ve learned is that I cannot be ashamed to talk with someone because the National of my MS and anyone with MS should not MS Society is a wealth of resources to helping be ashamed, but rather show how they are people and families living with MS.” n fighting it.” He believes that living with MS requires readjustment and recalibration of one’s life. “Listen to your body and when you HOW CAN WE HELP YOU? feel overwhelmed or fatigued, take it as a sign Call 1-800-FIGHT-MS to speak with that you need rest.” an MS Navigator today. We can help Coming from a broken home, Igor was you with: accustomed to giving up and at one low • registering with our chapter point in his life he felt like ending it all. He made the choice to put to rest such thoughts • finding a newly diagnosed program and wants to show his family that giving up • financial assistance should not be an option. “It will take more than living with MS to kill me.” To remain • finding emotional support engaged, Igor has become an avid reader • finding a wellness program and loves to read an array of book genres, believing this helps him stay focused. • connecting with a support group Life is a marathon, not a sprint • finding a health-care provider and you need to pace yourself. • making a long-term plan • locating transportation to your neurologist nationalmssociety.org/pae | 1-800-548-4611 19

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

By Karen Mariner, MSS, MSCIR PA: msactivepa.wordpress.com More than 300 activists from across the country attended the 2013 Public Policy facebook.com/MSPACAN Conference. While the weather did not @MScanPA cooperate, the PA and NJ delegation learned about the federal policy priorities for 2013. NJ: msactivenj.wordpress.com Considering the current conversations in Washington about sequestration, it should facebook.com/MSNJCAN come as no surprise that our policy priorities @NMSSNJCAN are focused on preserving crucial MS research online ion d i scuss the j oin programs and funding.

Pennsylvania advocacy group our PA Delegation: Regina Lisella Sue Gildea Sandy Carter Allison Coia Amy Bendekovits OUR NJ DELGATION: Dr. Noreen Sisko 20 MS connection: Spring 2013

surround MS and then to lobby before our legislators on Capitol Hill. This year we focused My experience on a few issues: MS research funding to the National Institute of Health & Congressionally IN WASHINGTON Directed Medical Research Programs; adequate resources for the FDA; joining of the MS By Amy Bendekovits Caucus; and the passing of a MS Resolution. These important issues will help shape the future My name is Amy of MS research and lead to finding a cure and Bendekovits and my better treatments. father passed away due to the symptoms Over the course of the three days, we spent time of MS just three in various panel and topic discussion groups to years ago. Because I understand the issues about MS. The conference understand the daily was also a great place for MS Activists from all struggles and concerns over the country to get together and network. of families and people I was able to meet some of the most remark living with MS, I people. The Capitol Hill visit was scheduled for wanted to make a difference. I want to help find the final day. Unfortunately, due to the weather, a cure. the day and appointments had to be cancelled. This did not stop us! We continued to spread After writing a short essay on my experience, the word via social media and will continue to I received acceptance to travel with the Greater conduct in-district visits with our legislators. Delaware Valley Chapter to the Public Policy Conference in Washington D.C. I was incredibly Overall, the conference was a wonderful and excited when I found out, and quite honored. educational experience. Together as a group, we The conference was held March 4-6th in will STOP MS, RESTORE what has been lost, Arlington, VA. The purpose of the conference and END MS forever. We are MS Activists and is to learn about the public policy issues that we will not stop until a cure is found. n

DON’T JUST RIDE, BIKE MS

BIKE MS: CITY TO SHORE RIDE /// SEPTEMBER 28 & 29 REGISTER TODAY! /// MSCYCLING.ORG /// 1-800-445-BIKE nationalmssociety.org/pae | 1-800-548-4611 21

disappointed in me because I can’t walk?” my special 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 grandmom continuing on with her life. My Grandmom is When 11-year-old Jenna an inspiration to women. She screams keep going Troyano was asked to don’t give up. She makes you want to keep going write an essay at school, and most important she makes people be better. she chose to write She changes the way they look at life. Makes them about her grandmother, appreciate what they have. She does what she can Jeannette Palmieri. Jeannette, from New Jersey, to live a full and happy life. She is special and I has been living with MS for more than 30 years. love her for it. Jenna got an A for this touching tribute to her Since my Grandmom has MS I am aware of all the ‘special Grandmom’. people around me that can’t walk. My whole life I have held the door for people who can’t or have My special grandmom trouble walking. Also when I see people parking by jenna troyano in Handicapped spots without a tag it makes me realize that because of my Grandmom’s special “You have a special Grandmom” I hear my needs I am aware. It also makes me realize that Grandmom say to my little brother. because of my Grandmom’s special needs I would When I heard those words I thought to myself I never even think of parking in the handicapped really do have a special Grandmom don’t I. When spot or not holding the door for people who can’t I look at my friends Grandmom’s they don’t look or have trouble walking. When I am with my like my Grandmom or do what my Grandmom Grandmother I do not feel uncomfortable or out does. My Grandmom may be special, but I of place because I don’t care what people think. I wouldn’t trade her for any other Grandmom in the love my grandmother for who she is and would world. Even though she lives her life with Multiple never even thinking of trying to change her. Sclerosis I still love her with all of my heart. Even though she is a special Grandmom I would Multiple Sclerosis is a neurological disease. never trade her for any other Grandmom in the Every case is different, but my Grandmom’s case world. I am always thankful that I can walk. I have has gotten so bad that she can’t walk. She was high respect for any Handicapped people and diagnosed with MS at 29 and has been struggling that will never go away. Therefore my Grandmom with it ever since. She could walk with a cane or is special and I love her. I don’t care what other walker for most of her life, but in her 50’s it got people think of her all that matters is what she worse and now she can’t walk at all. thinks of herself. I know she may be discouraged My Grandmom once asked me “are you sometimes, but she is normally positive, optimistic, and cheerful. She is perfect to me. n 22 MS connection: Spring 2013

Connection Programs role self-help groups play in addressing the informational, emotional and social support needs of people living with MS. There are more Getting You than 30 Connections (self-help) groups in our chapter today. For more information about Connected Connections groups in your area, or to talk to someone about establishing a group, contact The National MS Society Connection Outreach Manager Pat Thieringer at 1-800- Programs bring together people who share 548-4611 or email [email protected]. a common life experience for support, and mutual aid. Benefits of MS Friends Helpline participating in a connection program include learning new information and strategies for The MS Friends program connects you with managing your MS; finding support from volunteer peer counselors who are living with others; the opportunity to help others; and MS. The common bond of living with MS new power and confidence in facing the creates a unique connection. MS Friends challenges of living with MS. 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 Connection programs are available conversations are confidential in a variety of formats including: to the peer relationship. Online Peer Local Connections Support Groups Connections at The Society self-help groups have different MSconnection.org purposes and goals. Groups may focus on MS affects everyone differently – that’s why support, advocacy, education or be more it is important to have someone you can social in nature. Some groups also serve count on to support you in the way that YOU specific populations, such as young couples, need. Through the Online Peer Connections care partners, or African-Americans. Visit program you can search for and connect nationalMSsociety.org/pae for a list of our with a peer support volunteer who has “been chapter programs. there” and can provide you with helpful tips, Members of self-help groups share a belief suggestions and emotional support for the that positive personal change happens challenges that MS throws at you. Online Peer through individual efforts with the support Connections volunteers have been through a of others. The Society recognizes the valuable rigorous screening and training process. Visit nationalmssociety.org/pae | 1-800-548-4611 23

MSconnection.org to get started. area, contact Pat Thieringer at 1-800-548-4611 or email [email protected]. No Connections Group in your Area? Speaker’s Bureau If there is no local Connections Support group in your area, and you’re considering joining Each year, the Greater Delaware Valley Chapter with others to start one, we can help you. produces more than 100 educational programs, Hundreds of MS Connections support groups including teleconferences, for people living have started throughout the United States with with MS. We also coordinate more than 30 the courage and initial efforts of just one person support group meetings each month. In order who recognized the value of creating a caring to enrich the educational opportunities we offer community of people “who truly understand” our clients and local health care providers, we because they too “have been there,” and share are currently expanding our speaker’s bureau their experiences, strengths and hopes. database. This database is a collection of local and regional professionals who we may ask to Our chapter is especially in need of support speak on behalf of our chapter about various groups in Atlantic, Camden, Cumberland and topics relating to MS. If you have knowledge Salem Counties in New Jersey. We also have a that would be of interest to individuals living great need for support groups in the following with MS, please join us in the movement to Pennsylvania Counties: Berks, Carbon, Monroe fight MS by volunteering to be a member of and Northampton. There is also a need for our speaker’s bureau. n groups in many Philadelphia neighborhoods including West Philadelphia, the northeast, southwest and northwest Philadelphia. We can assist you in starting a Connections Becoming a Group, so the effort is not on your shoulders SPEAKERS member of alone, but shared with others. Just phone us our Speaker’s and we will lead you through the process of ARE NEEDED Bureau developing this meaningful resource in your provides you with a chance to educate area. Our chapter has a new leader training the community, grow your network process that will provide you with leadership and join the movement! Speaking training, assistance in securing a meeting opportunities are available at self-help place, an entire library of educational and group meetings, chapter programs, marketing materials, and a supportive network community events and more. To of experienced leaders to help your group take register for our speaker’s bureau, please flight. complete an online application at nationalMSsociety.org/pae. To learn more about starting a group in your 24 MS connection: Spring 2013

NEWLY DIAGNOSED Memory issues may impact employment is it harder to work with MS? 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 I know that as each year has gone on, the before MS can become seemingly insurmountable problems that I have had in trying to work afterward. The fluctuation of daily symptoms efficiently seem to get worse. However, recent and unknown levels of future disability research indicates that some people who are make mapping out a strategic career path a newly diagnosed or have had an episode of a challenge, to say the least. We simply do not clinically isolated syndrome may already need to know what the future holds around our ability adjust their time at work. to perform a job. Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently “I am able to work more when i diagnosed with MS. In the Cognition and feel good, less when i feel bad, Socio-Economics (COGNISEC) study, and take a quick nap if needed.” the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the past two years and I am lucky enough to be able to work from have been on disease-modifying therapy for less home. I am able to work more when I than six months or not at all. feel good, less when I feel bad, and take a quick nap if needed. There are days when I what they found: can work a full day, but there are many days n People with higher levels of fatigue and when I do not feel productive at all — when disability all decreased their working hours even looking at the computer screen feels like within 12 months following diagnosis. torture. nationalmssociety.org/pae | 1-800-548-4611 25

n Lower long-term memory scores correlated On the other hand, many people with MS with a lower number of hours and days spent continue working long after their diagnosis. working during the week. Disease-modifying therapies, new technologies, n People who scored lower on “focused better symptom management, legal employment attention” and “speed of memory” were protections and community resources can help more likely to say they “wished to work you remain in the workforce — and education less.” and preparation can be your most powerful n Scores on tests assessing depression (Beck tools for success. Depression Inventory) did not correlate at all with quantity of working hours. While its findings need to be replicated in Diagnosed with MS in larger studies, so far this research shows that 2003, Julie Stachowiak, cognitive dysfunction can negatively impact PhD, is the author the capacity to work, even in the very early of The Multiple stages of MS. Sclerosis Manifesto and MS.about.com. 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 tools to work physical disability. While it is tempting to keep pushing ourselves to do more and overcome If you’re struggling to keep up at work, some of these challenges, it is important to but aren’t ready to throw in the towel remind ourselves that we may have very real just yet, visit MSWorks.org or call an MS cognitive symptoms related to our MS that are Navigator at 1-800-344-4867 to learn impacting our abilities to work the same way more about your options and get con- we did in the past. nected with employment resources in the Greater Delaware Valley. “... so far this research shows The Job Accommodation Network at askjan.org also offers information on that cognitive dysfunction can a range of subjects for working people negatively impact the capacity with disabilities. to work, even in the very early stages of ms.” 26 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 Kathryn Pannepacker weaves a shag on with her gait, incredible fatigue and an abandoned property at front and necrosis (the premature death of cells) westmoreland streets in philadelphia in her hip, among others. But despite had experienced as a teenager had caused everything that MS has thrown at her, her doctors to question whether she may Kathryn remains positive and committed have MS. The neurological problems that to helping others through her career as an she experienced during her travels helped to artist and in her local community. confirm this diagnosis of Relapsing-Remitting MS. It was a college weaving class that inspired Kathryn to begin a career in textiles. Shortly MS has created numerous challenges for after graduating in the early 1990s, she Kathryn, and has even impacted her ability to travelled to California to undertake an produce her artwork. One of her pupils shakes apprenticeship with a family of textile artists. slightly, at times making it more difficult for She spent three and a half years learning her to focus on the fine threads that she uses traditional tapestry methods, like creating to produce her work. Necrosis in her hip has a woven painting using string and yarn. meant that she has needed two surgeries. But She later travelled to France and Japan to despite this, Kathryn has never let MS get in study other tapestry methods, including the the way of her career. traditional technique of pictorial weaving with wool and cotton. Kathryn has achieved the dream that she set for herself as a young woman, to be a full time It was around this time that her symptoms artist who doesn’t need to rely on part time intensified. The vision problems that Kathryn jobs to get by. Her work can be seen across nationalmssociety.org/pae | 1-800-548-4611 27

her home town of Philadelphia and has taken rehab while she was in the hospital, she would her to numerous countries, including Canada, not be covered after she returned home. A Lithuania, Mexico, Poland and Turkey. social worker encouraged her to contact the National MS Society. She knew about the She is known for using materials in metaphor. Society through educational For one wall piece she used 7,000 cotton programs and workshops she swabs. For another series, she used matches to had attended, but this was the represent “setting your heart on fire for peace,” first time she had reached out representing flags of nations in conflict, for for services. Over the last few example the U.S. and Iraq, and Israel and years she has received crutches, Palestine. She has worked with homeless two rounds of physical therapy men and women in Philadelphia through the and bathroom modifications. Mural Arts Program to show the meaning of According to Kathryn, “The home, and to help break down the stigma support that I have received from surrounding homelessness. She also teaches the National MS Society has them how to weave scarfs, gain a livelihood been remarkable. I don’t know and a sense of pride. One of her current what I would have done otherwise.” projects is called ‘Adopt a Fence/Sponsor a Shag,’ where neglected lots are transformed No matter what challenges she faces, Kathryn when Kathryn weaves textiles through the refuses to be defined by the disease. “I don’t chain link fences. Her work brings to life her want MS to be a big cloud hanging over my philosophy of “art for all.” head. Everyone’s got something,” she says. “We just need to be good to each other and Kathryn’s passion for art and people extends ourselves.” to her local community. She has helped people living with disabilities, senior citizens, at a For more information about Kathryn’s work, methadone clinic and a prison. She likes to visit kpannepacker.com. Information about include others in her career by hosting a party the Adopt a Fence/Sponsor a Shag project whenever she returns from a trip abroad, is available on Facebook at facebook.com/ telling stories, showing what she created there AdoptAFenceSponsorAShag. n 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 28 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 Behringer Harvard Operating Mrs. Melissa M. Brown individuals and organizations Partnership LLP Dr. Raymond Bruno Bell Nursey USA, LLC Bryn Mawr Hospital for their commitment to the Ms. Nancy Belser Mrs. J. Mahlon Buck, Jr. MS movement*: Mr. and Mrs. Jay Benner Mr. and Mrs. William C. Buck Bentley Systems, Inc. Mrs. Krista Buerger Mr. Ron Abel John Bereschak, III, CPA & Maria Mr. William Bujalos Abington Memorial Hospital LoCasale Bereschak Mr. and Mrs. Len Burkart Acorda Therapeutics Berkadia Commercial Mortgage LLC Mr. John R. Burke, Jr. Actelion Clinical Research, Inc. Mr. John Berry Mr. and Mrs. David M. Burns Mr. David Jason Adelman Mr. Michael and Mrs. Tara Betsch Mr. John Charles Butts Mr. Dean Adler and Mrs. Susanna Biddle Insurance Services, Inc. Ms. Alison Byers, PsyD Lachs Adler Ms. Lynn Biehn Ms. Tami Caesar and Mr. Steve Karlovic Mr. Stephen A. Albertini Mr. Edward Black Mr. John F. Campbell Mr. Dennis Alter Mr. John Blakeley Canada Dry Delaware Valley Bottling American Mr. Arthur Block Company Aqua Charitable Trust Blueyes Foundation Canon Business Solutions Aquahab, LP BNY Wealth Management Canon Financial Services, Inc. Mr. Noel Archard Bohler Inc. Ms. Lisa Canonico Steven and Stacey Asbell Mr. Joseph N. Bollendorf Caron Treatment Centers Asher & Company Miss Yolan M. Bordner Carpenter Technology Corporation AtlantiCare Health System Mrs. Elizabeth A. Borst CDI International Inc. Automated Financial Systems, Inc. Bottino’s Supermarkets Mr. Christopher and Ms. Arbella Cherkis Automotive Rentals, Inc. Mr. and Mrs. Karl Bowers Christenson Investment Partners Mr. Randall Bair Mrs. Shelley Boyce Christine McCafferty Community Valli Baldassano and Lee Bellapigna Mr. Andrew Boyle Emergency Fund Dr. Vincent F. Baldassano Clayman Family Foundation Mr. Bill Bankes Brass Holdings LLC CME Benefits Consulting Dr. and Mrs. Allen Bar Ms. Jayne A. Bray Abbi L. Cohen, Esq. Barretta Tile and Stone, Inc. Mr. Robert J. Bray Nate and Terri Cohen Mr. and Mrs. Herbert Bass Ms. Adean Bridges Coloplast Mr. Russell J. Batdorf Mr. Rich Brome Corporation Bayada Nurses The Bronstein Family Comcast Spectacor Charities Mr. Daniel Beaty Ms. Susan Brooks Conrail Mr. John Begier Mr. David and Mrs. Caryn Bross Miss Marlene Conway nationalmssociety.org/pae | 1-800-548-4611 29

Ms. Carol Ann Corcoran Mr. Emmanuel and Ms. Gabrielle Emore Drs. Harry and Ilene Grossman Mr. Robert J. Corrigan ERT (eResearch Technology Inc.) Mr. Navin and Dr. Renu Gupta Corvette Enthusiasts Community Mr. David and Mrs. Perri Evanson Haddon House Food Products Foundation Exley’s Landscape Service, Inc. Ian and Caryn Harris Mr. Michael Coslov Mr. and Mrs. Terry Fadem The Hassinger Family Cozen O’Connor Foundation, Inc. Mr. Ritson Ferguson Bob and Irene Haver Fund Crayola Mrs. Mary M. Field Ms. Anne Hawkins Creative Financial Group, LTD First Savings Community Foundation Mr. Daniel and Mrs. Cynthia Hayes Mr. David Cutler Firstrust Bank Mr. John Heil Mr. Milton Cutler Mr. Frank Floczak, III Mrs. Christa M. Held CVS Caremark Ms. Carol Flynn Henkels & McCoy, Inc. Mr. Americo Da Corte Mr. Bryan and Mrs. Michele Foulke Ms. Diane M. Hermann Dacey’s Pub Fox Rothschild LLP Ms. Elizabeth A. Hinkle Dantino Inc. dba Martino Giovanni & Frank C. Videon, Inc. Mr. and Mrs. Tom Hinton Pileggi Franklin Square Holdings LP Mr. Keith and Mrs. Susan Hodge The Darragh Family Mr. Joseph and Mrs. Amy Frick Holman Automotive Group, Inc. Daughters of Penelope Nike Chapter Mr. Gabriel Gant Dr. and Mrs. Bruce D. Hopper #230 Garbose Family Foundation Horizon Services, Inc. Ms. Adah Davis Mr. Jose Garces Mr. Brian B. Huber Loretto Davis Mrs. Cynthia J. Garlit I.B.E.W. Local Union 98 Day & Zimmerman, Inc. Mr. Paul H. Garnier Image First Uniform Rental Services, Inc. Mr. Nicholas J. DeBenedictis Mr. Leonard J. Gatti Ms. Maria A. Incudine Mr. Richard C. Rizzo Ms. Monica M. Gaudiosi Independence Blue Cross Mrs. Michele Del Collo Mr. Garrett L. Gee International Union of Elevator The Delellis Family GenOn Energy Constructors Local 5 Mr. and Mrs. Roger J. Dennis Gerald B. Shreiber Foundation Marianne Jackson and Shawn Kelly Ms. Barbara Helen Deptula Mr. and Mrs. David Gerson Janney Montgomery Scott LLC Mr. and Mrs. Brian DiDonato Genzyme, a Sanofi company Ms. Ellen B. Johnson Mrs. Rosemary and Ms. Kathryn Mr. Mario and Mrs. Pamela Giannini Mr. Ron W. Johnson Diederich Ms. Pam Gifford David Johnston Dimension Data The Hon. Barbara and Mr. Alan Gilbert Dr. Janet K. Johnston Diversified Search, LLC Ms. Mary Ann Gindlesperger Joseph F. McHugh Agency, Inc. Ms. Noreen C. Doyle Giorgio Foods, Inc. Mr. and Mrs. Richard Josephs Mr. William N. Drury Mr. and Mrs. Jonathan Gispan Mr. Ted Kaminer Ms. Dorothy G. Dwyer , Inc. Ms. Sally Lyn Katz Dynamic Images Inc. The Gougler Family Mr. Sol Katz Mr. Robert B. D’Zuro Mr. Kurt Daniel Graff The Kauffman Family In memory of Edward J. Goodman Ms. Carole Gravagno Mr. and Mrs. Mitchell Kaye Mr. Joseph Edwards Greater Cape May Elks Lodge Mr. and Mrs. Robert E. Keith, Jr. E-Finity Distributed Generation, LLC Greater Philadelphia Chamber of Mr. Anthony S. Keller Dr. Howard Eisenberg and Ms. Susan Commerce Mr. Robert N. Kennedy Sandler Greater Philadelphia Tourism Marketing Ms. Patricia E. Kerr Embassy Bank Corporation Keystone Industries EMD Serono, Inc. Jay and Dale Gress, II Keystone Mercy Health Plan Emerson Group Drs. Kent and Lori Griswold Kildare Capital, Inc. 30 MS connection: Spring 2013

Mr. Kevin and Mrs. Cynthia King Maryanne Christopher Salon Spa Passion Vines Wine & Spirit Company Paul and Susan Kinmartin Mr. and Mrs. Leonard Mayo Trena L. Pelham, MD Kiwanis Club of Burlington Mrs. Jessica and Ms. Shirley Mazur Penn Jersey Paper Co. The Klein Family Ms. Linda J. McAleer and Mr. Maitlon , LLP Kohl’s Russell Mrs. Michele Perez Bradley and Pamela Korman Ms. Dea M. McAlonan Mr. and Mrs. Jeff Petty KPMG LLP Mr. William and Mrs. Trisha McCain Mr. Larry and Mrs. Charlene Pezzato Eric Kraeutler, Esq. Mr. George B. McClennen, II Mr. Rajan S. Phanda Mr. Jonathan G. Kraus Ms. Marisa McCormick Miss Pamela M. Phelan Mr. Bradley A. Krouse Ms. Merideth A. Mcdowell Philadelphia Eagles Ms. Patricia Kubiak Mrs. Kristina McGraw Philadelphia Electric Company Mrs. Colleen Renee Kucharczuk Mr. Richard McMahon Philadelphia Electrical Equipment Co. Mr. Charles D. Kurtzman Mr. Bernie and Mrs. Kathleen Philadelphia Phillies La Belle Fit Spa Inc. McNamee Ms. Carolyn A. Piccone Laborers’ Local Union 57 The McNamee Family The Pickard Family Ms. Phyllis Lagerman Mr. Brian McVeigh Mr. Albert N. Pickles III Mr. Michael and Dr. Jennifer Lambert Merck Sharp & Dohme Robin Liskoski-Piree Mr. and Mrs. Charles Lambiase Metro Public Adjustment, Inc. PJM Interconnection Langhorne Rod & Gun Club, Inc. Mr. Adam Milberg Mr. Jim Plousis Mr. Frank Langley MileStone Bank PMB Rotary Law Office of Jamie R. Hall Miletos Group LLC Miss Julie Lynn Poeschel The Leaders Edge / Leaders By Mr. Richard and Mrs. Harriet Millan Mr. Daniel and Mrs. Margo Polett Mrs. Ella S. Lee Mr. John and Mrs. Josette Miller Ms. Kelly Possinger Mrs. Margie Lefcoe-McClennen Mrs. Lenore Millhollen Ms. Jessica Brooke Postupack Lehigh Valley Health Network Mr. Robert Moatz and Mrs. Lisa Preferred Sands Mr. Stanley John Lesniak Yanolko-Moatz PREIT (PA Real Estate Investment Trust) Mr. Brett Levin William Monahan Mr. and Mrs. David Pressel Ms. Justine F. Lien Mrs. Robert Moorer Mr. and Mrs. Marshall Prince Mr. Michael Lindsay Mr. Joseph J. Mucerino, Sr. Professional Capital Services LLC (PCS) Mr. Edward Lipkin Mr. James L. Murray, Esq. Mr. and Mrs. Donald Pusey The Loftus Family Ms. Julie Anne Natale Fenton Mr. Frank G. Quarto Mr. and Mrs. Peter S. Longstreth Navar Applied Sciences Corporation Questcor Pharmaceuticals Ms. Daniela LoPresti Neubauer Family Foundation QVC, Inc. Mr. Ira M. Lubert NHS Human Services Radian Mr. Robert Joseph Lucci Mr. Dale and Mrs. Betsy Nice The Rainey Family Mr. John Lyons Mr. Philip and Mrs. Carole Norcross Rancocas Anesthesiology, P.A. Mrs. Helen T. Madeira NovaCare Outpatient Rehabilitation Ransome Cat Mr. John J. Maguire Novartis Pharmaceuticals Dr. Eric and Mrs. Kim Ratner Mr. Mike A. Maguire Novick Brothers Corporation The Raudenbush Family Honorable Nicholas J. Maiale Mr. and Mrs. Gary Novick Red Robin Mrs. Beth A. Malikowski Mr. James O’Brien Mr. and Mrs. Gene Reid Mr. Joe Mallon Mr. and Mrs. Patrick O’Hare Reilly, Janiczek, McDevitt P.C. Dr. Julian M. Maressa Mr. B. and Mrs. Elizabeth Owens Reuben and Mollie Gordon Foundation Mr. and Mrs. Andrew Marshall PA Power & Light Mr. Scott and Mrs. Roberta Richard Dr. Bronwyn L. Martin Parkway Corporation Mr. John Richmond nationalmssociety.org/pae | 1-800-548-4611 31

Ride-Away Handicap Equipment Mr. and Mrs. Robert Spires Mr. and Mrs. Stephen Tullman Corporation St. Luke’s Hospital & Health Network Mr. Eric Tweer Mr. Charles and Mrs. Melissa Roberts Ms. Elizabeth Stewart Laura Grossi-Tyson and Jeffrey Tyson Mr. and Mrs. Jeffrey Roes Mr. Mark Stielow UGI Corporation Mr. Charles A. Rowland Mr. Sean and Mrs. Carolyn Stonelake United Security Assurance Inc. Ms. Jennifer L. Rozo Ed and Linda Streb University of Pennsylvania Mr. and Mrs. Robert Rubin Mr. Frank Striffling and Dr. Carla University of Pennsylvania Health System Mr. Frank Rugienius Narducci UPS Ms. Linda J. McAleer and Mr. Maitlon Foundation, Inc. V&S Pizzeria Russell Suelle Corporation Renaat and Daisy Van den Hooff Frank C. Sabatino, Esq. Mrs. Jacalyn M. Sullivan Mr. Edward Varley Mrs. Kelly J. Sabold Sun Federal Mr. Jeff and Mrs. Peggy Vaughan Mr. Michael Salin Mr. and Mrs. David Swingle VCI Mobility Saul Ewing, LLP Sykora Family Charitable Foundation Mr. and Mrs. Tinkham Veale Mr. Randall and Mrs. Nora Schenk T.W. Cooper Insurance Mr. Richard and Mrs. Johnette Venne Ms. Peggy Scheule Mr. and Mrs. John Talese Mr. Gerald P. Verbrugghe Mr. Timothy Scheve Dr. Chris A. Teleha Viropharma Incorporated Mrs. Brenda R. Schuck Mr. Marc and Mrs. Kathleen Tellier Mr. John and Mrs. Heather Volpe Mr. Christopher M. Scofield Temple University School of Medicine Vynamic Mr. Robert W. Seckinger Mr. Bruce E. Terker W.W. Smith Charitable Trust SEI Investments Teva Pharmaceuticals Mr. Michael S. Warner The Sergent Family Mr. & Mrs. John Thalheimer Mr. Thomas E. Wartenberg Seymore and Helen Ann Rubin The Air Products Foundation The Weber Family Foundation The Argus Fund Mr. Paul and Mrs. Marilyn Weintraub Shannon Outdoor Advertising Inc. The Frederick H. Bedford Jr. & Ms. LeaAnne Welsh Dr. Edward and Mrs. Clare Sheehan Margaret S. Bedford Charitable Mr. Andrew Whelan Ms. Molly D. Shepard and Mr. Peter J. Foundation Mr. Fred G. White Dean The Herman and Jerry Finkelstein The Whitmire Family The Sheroff Family Foundation Ms. Liz Wideman Shire Us Inc. (Shire Pharmaceuticals) The Jennie Perelman Foundation, Inc. Dr. Sankey and Ms. Constance Williams Shore Memorial Hospital The John and Robin Burch Family Fund Mr. Peter F. Wolf Mr. Robert J. Shrader The John F. Scarpa Foundation Ms. Jacquie O. Young Signature HVAC, Inc. The Karen and Herbert Lotman Mr. and Mrs. Benjamin Zuckerman Mr. Daniel B. Silverberg Foundation Mr. John Skelnik The Keller Family Charitable Trust SKF USA, Inc. The Portmann Family Charitable Fund * This list reflects donors from Smith Mack & Company, Inc. The Union League of Philadelphia the start of our campaign Mr. Al Smith Ms. Dolores Thomas Mr. Gregory L. Smith Titan Disposal in January 2012 through The Smith Family Toll Bros Inc. December 2012. Our apologies SmitHahn Company, Inc. Tozour Family Foundation for any inadvertent errors or Ms. Diane Snowden Traci Lynn Jewelry omissions. n Dr. Randall William Snyder III Traffic Planning & Design, Inc. Mr. Edward J. Solomon The Traviline Family South Jersey Federal Credit Union Ms. Susan Tressider Free Matter for the Blind or Handicapped

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June 8 & 9, 2013 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 This course a world free of MS. doesn’t REGISTER NOW: muck around. MuckFestMS.com