MSConneC tion€¦ · strategies to accelerate treatments for progressive forms of MS. Leading experts across all the major research areas set priorities for moving forward. They

Spring 2013 greater Delaware Valley Chapter

MSConneCtion newSletter

inSiDe thiS iSSUe

22ConneCtion groUp —getting yoU ConneCteD

10BUt yoU look So gooD — latoya roSS

16MS iS not who i aM — igor St. pharD

11FireD For haVing MS: Jane gagliarDo’S Story

26FaCe oF MS: kathryn pannepaCker

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

02 MS connection: Spring 2013

national MUltiple SCleroSiS SoCietyGreater Delaware Valley Chapter 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611

Chair: Marianne JacksonViCe ChairS: Valli Baldassano, Larry KanepreSiDent: Tami CaesarViCe preSiDent, Client SerViCeS, CoMMUniCationS anD operationS: Kevin MoffitteDitor: Yarissa Reyes

©2013 National Multiple Sclerosis Society, Greater Delaware Valley Chapter

Information provided by the Society is based upon professional advice, published experi-ence and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recom-mends that all questions and information be discussed with a personal physician.

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 for the use or contents of any product or ser-vice mentioned.

MSConnection welcomes letters to the editor. Send letters to [email protected] 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.

loCal eVentSto 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 [email protected]

Like us: facebook.com/greaterdelMS

Follow us: twitter.com/greaterdelMS

Watch us: youtube.com/nmsspae

Pin us: pinterest.com/greaterdelvalMS

03nationalmssociety.org/pae | 1-800-548-4611

taMi CaeSar, preSiDent

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 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


reSearCh BrieFSnational MS SoCiety JoinS CollaBoratiVe eFFort to iDentiFy anD SpeeD DeVelopMent oF nerVe-proteCting DrUgSThe 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

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


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

(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

ContinUeD FroM CoVer

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!

City to ShoreRide 2012

FALL

SUMMER

2012

SPRING

DID YOU KNOW?

YEAR-ROUND


Chapter welCoMeS new internSFrom 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 [email protected]. n

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 >


FUnDraiSing

annUal Metro DriVe For MSDiy 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.

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

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 [email protected]. n

Metro DriVe For MS FUnDraiSing eVent


FUnDraiSing

raiSing the StakeS For MS: the preakneSS at the piazzaLadies 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

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


yoUng CoUpleS ConneCtionS groUpBY MICHAEL BLACK-SMITH

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

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

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).

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.

For more information about this and other Connections groups, please contact Pat Thieringer at 1-800-548-4611 or email [email protected]. n

yoUng CoUpleS SUpport groUp


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

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.”

latoya roSS


“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 any-More. 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 MSJANE 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


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

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


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

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 [email protected]. n

MSWORKS

VitaMin D reSearCh CliniCal trial UpDateWe’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

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


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 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.’

liSa kraUSS


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

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. “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 [email protected] or calling 1-800-883-WALK.


MS iS not who i aMCoNTRIBUToRS: 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 DiagnoSiSPrior 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

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.

MeDiCationSMS 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


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

exerCiSeThe 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 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.

FaMilyIgor’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


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 aDViCeRegardless 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.

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

SoCiety SUpportFollowing 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


aDVoCaCy

MS aCtiViStS take oVer the hillBY 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 D

iSCUS

Sion o

nlin

epa: msactivepa.wordpress.com

facebook.com/MSPACAN

@MScanPA

nJ: msactivenj.wordpress.com

facebook.com/MSNJCAN

@NMSSNJCAN

oUr pa Delegation:Regina LisellaSue GildeaSandy CarterAllison CoiaAmy Bendekovits

oUr nJ Delgation: Dr. Noreen Sisko

pennSylVania aDVoCaCy groUp


My experienCe in waShingtonBY 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

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

DON’T JUSTRIDE, BIKE MS

BIKE MS: CITY TO SHORE RIDE /// SEPTEMBER 28 & 29REGISTER TODAY! /// MSCYCLING.ORG /// 1-800-445-BIKE


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 granDMoMBY 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


ConneCtion prograMS

getting yoU ConneCteDThe 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 groUpSThe 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

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 1-800-548-4611 or email [email protected].

MS FrienDS helplineThe 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.orgMS 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


area, contact Pat Thieringer at 1-800-548-4611 or email [email protected].

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

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.

SpeakerS are neeDeD

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


newly DiagnoSeD

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 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.

MeMory iSSUeS May iMpaCt eMployMent


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 BalanCeWhat 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 workIf 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 con-nected 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.


FaCe oF MS: kathryn pannepaCkerAward-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

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 doesn’t need to rely on part time jobs to get by. Her work can be seen across

kathryn pannepaCker weaVeS a Shag on an aBanDoneD property at Front anD weStMorelanD StreetS in philaDelphia


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

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


thank yoU to the Following inDiViDUalS anD organizationS For their CoMMitMent to the MS MoVeMent*:

Mr. Ron Abel Abington Memorial HospitalAcorda TherapeuticsActelion Clinical Research, Inc.Mr. David Jason AdelmanMr. Dean Adler and Mrs. Susanna

Lachs AdlerMr. Stephen A. AlbertiniMr. Dennis AlterAmerican InfrastructureAqua Charitable TrustAquahab, LPMr. Noel ArchardSteven and Stacey AsbellAsher & CompanyAtlantiCare Health SystemAutomated Financial Systems, Inc.Automotive Rentals, Inc.Mr. Randall BairValli Baldassano and Lee BellapignaDr. Vincent F. BaldassanoMr. Bill BankesDr. and Mrs. Allen BarBarretta Tile and Stone, Inc.Mr. and Mrs. Herbert BassMr. Russell J. BatdorfBayada NursesMr. Daniel BeatyMr. John Begier

Behringer Harvard Operating Partnership LLP

Bell Nursey USA, LLCMs. Nancy BelserMr. and Mrs. Jay BennerBentley Systems, Inc.John Bereschak, III, CPA & Maria

LoCasale BereschakBerkadia Commercial Mortgage LLCMr. John BerryMr. Michael and Mrs. Tara BetschBiddle Insurance Services, Inc.Ms. Lynn BiehnMr. Edward BlackMr. John BlakeleyMr. Arthur BlockBlueyes FoundationBNY Wealth ManagementBohler Engineering Inc.Mr. Joseph N. BollendorfMiss Yolan M. BordnerMrs. Elizabeth A. BorstBottino’s SupermarketsMr. and Mrs. Karl BowersMrs. Shelley BoyceMr. Andrew BoyleBrandywine Realty TrustBrass Holdings LLCMs. Jayne A. BrayMr. Robert J. BrayMs. Adean BridgesMr. Rich BromeThe Bronstein FamilyMs. Susan BrooksMr. David and Mrs. Caryn Bross

Mrs. Melissa M. BrownDr. Raymond Bruno Bryn Mawr HospitalMrs. J. Mahlon Buck, Jr.Mr. and Mrs. William C. BuckMrs. Krista BuergerMr. William BujalosMr. and Mrs. Len BurkartMr. John R. Burke, Jr.Mr. and Mrs. David M. BurnsMr. John Charles ButtsMs. Alison Byers, PsyDMs. Tami Caesar and Mr. Steve KarlovicMr. John F. CampbellCanada Dry Delaware Valley Bottling

CompanyCanon Business SolutionsCanon Financial Services, Inc.Ms. Lisa CanonicoCaron Treatment CentersCarpenter Technology CorporationCDI International Inc.Mr. Christopher and Ms. Arbella CherkisChristenson Investment PartnersChristine McCafferty Community

Emergency FundClayman Family FoundationCME Benefits ConsultingAbbi L. Cohen, Esq.Nate and Terri CohenColoplastComcast CorporationComcast Spectacor CharitiesConrailMiss Marlene Conway

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.


Ms. Carol Ann CorcoranMr. Robert J. CorriganCorvette Enthusiasts Community

FoundationMr. Michael CoslovCozen O’Connor Foundation, Inc.CrayolaCreative Financial Group, LTDMr. David CutlerMr. Milton CutlerCVS CaremarkMr. Americo Da CorteDacey’s PubDantino Inc. dba Martino Giovanni &

PileggiThe Darragh FamilyDaughters of Penelope Nike Chapter

#230Ms. Adah DavisLoretto DavisDay & Zimmerman, Inc.Mr. Nicholas J. DeBenedictisMr. Richard C. RizzoMrs. Michele Del ColloThe Delellis FamilyMr. and Mrs. Roger J. DennisMs. Barbara Helen DeptulaMr. and Mrs. Brian DiDonatoMrs. Rosemary and Ms. Kathryn

DiederichDimension DataDiversified Search, LLCMs. Noreen C. Doyle Mr. William N. DruryMs. Dorothy G. DwyerDynamic Images Inc.Mr. Robert B. D’ZuroIn memory of Edward J. GoodmanMr. Joseph EdwardsE-Finity Distributed Generation, LLCDr. Howard Eisenberg and Ms. Susan

SandlerEmbassy BankEMD Serono, Inc.Emerson Group

Mr. Emmanuel and Ms. Gabrielle EmoreERT (eResearch Technology Inc.)Mr. David and Mrs. Perri EvansonExley’s Landscape Service, Inc.Mr. and Mrs. Terry FademMr. Ritson FergusonMrs. Mary M. FieldFirst Savings Community FoundationFirstrust BankMr. Frank Floczak, IIIMs. Carol FlynnMr. Bryan and Mrs. Michele FoulkeFox Rothschild LLPFrank C. Videon, Inc.Franklin Square Holdings LPMr. Joseph and Mrs. Amy FrickMr. Gabriel GantGarbose Family FoundationMr. Jose Garces Mrs. Cynthia J. GarlitMr. Paul H. GarnierMr. Leonard J. GattiMs. Monica M. GaudiosiMr. Garrett L. GeeGenOn EnergyGerald B. Shreiber FoundationMr. and Mrs. David GersonGenzyme, a Sanofi companyMr. Mario and Mrs. Pamela GianniniMs. Pam GiffordThe Hon. Barbara and Mr. Alan GilbertMs. Mary Ann GindlespergerGiorgio Foods, Inc.Mr. and Mrs. Jonathan GispanGlobus Medical, Inc.The Gougler FamilyMr. Kurt Daniel GraffMs. Carole GravagnoGreater Cape May Elks LodgeGreater Philadelphia Chamber of

CommerceGreater Philadelphia Tourism Marketing

CorporationJay and Dale Gress, IIDrs. Kent and Lori Griswold

Drs. Harry and Ilene GrossmanMr. Navin and Dr. Renu GuptaHaddon House Food ProductsIan and Caryn HarrisThe Hassinger FamilyBob and Irene Haver FundMs. Anne HawkinsMr. Daniel and Mrs. Cynthia HayesMr. John HeilMrs. Christa M. HeldHenkels & McCoy, Inc.Ms. Diane M. HermannMs. Elizabeth A. HinkleMr. and Mrs. Tom HintonMr. Keith and Mrs. Susan HodgeHolman Automotive Group, Inc.Dr. and Mrs. Bruce D. HopperHorizon Services, Inc.Mr. Brian B. HuberI.B.E.W. Local Union 98Image First Uniform Rental Services, Inc.Ms. Maria A. IncudineIndependence Blue CrossInternational Union of Elevator

Constructors Local 5Marianne Jackson and Shawn KellyJanney Montgomery Scott LLCMs. Ellen B. Johnson Mr. Ron W. JohnsonDavid JohnstonDr. Janet K. JohnstonJoseph F. McHugh Agency, Inc.Mr. and Mrs. Richard JosephsMr. Ted KaminerMs. Sally Lyn KatzMr. Sol KatzThe Kauffman FamilyMr. and Mrs. Mitchell KayeMr. and Mrs. Robert E. Keith, Jr.Mr. Anthony S. KellerMr. Robert N. KennedyMs. Patricia E. KerrKeystone IndustriesKeystone Mercy Health PlanKildare Capital, Inc.


Mr. Kevin and Mrs. Cynthia KingPaul and Susan KinmartinKiwanis Club of BurlingtonThe Klein FamilyKohl’sBradley and Pamela KormanKPMG LLPEric Kraeutler, Esq.Mr. Jonathan G. KrausMr. Bradley A. KrouseMs. Patricia Kubiak Mrs. Colleen Renee KucharczukMr. Charles D. KurtzmanLa Belle Fit Spa Inc.Laborers’ Local Union 57Ms. Phyllis LagermanMr. Michael and Dr. Jennifer LambertMr. and Mrs. Charles LambiaseLanghorne Rod & Gun Club, Inc.Mr. Frank LangleyLaw Office of Jamie R. HallThe Leaders Edge / Leaders By DesignMrs. Ella S. Lee Mrs. Margie Lefcoe-McClennenLehigh Valley Health NetworkMr. Stanley John LesniakMr. Brett LevinMs. Justine F. Lien Mr. Michael LindsayMr. Edward LipkinThe Loftus FamilyMr. and Mrs. Peter S. LongstrethMs. Daniela LoPrestiMr. Ira M. LubertMr. Robert Joseph LucciMr. John LyonsMrs. Helen T. MadeiraMr. John J. MaguireMr. Mike A. MaguireHonorable Nicholas J. MaialeMrs. Beth A. MalikowskiMr. Joe MallonDr. Julian M. MaressaMr. and Mrs. Andrew MarshallDr. Bronwyn L. Martin

Maryanne Christopher Salon SpaMr. and Mrs. Leonard MayoMrs. Jessica and Ms. Shirley MazurMs. Linda J. McAleer and Mr. Maitlon

RussellMs. Dea M. McAlonanMr. William and Mrs. Trisha McCainMr. George B. McClennen, IIMs. Marisa McCormickMs. Merideth A. McdowellMrs. Kristina McGrawMr. Richard McMahonMr. Bernie and Mrs. Kathleen

McNameeThe McNamee FamilyMr. Brian McVeighMerck Sharp & DohmeMetro Public Adjustment, Inc.Mr. Adam MilbergMileStone BankMiletos Group LLCMr. Richard and Mrs. Harriet MillanMr. John and Mrs. Josette MillerMrs. Lenore MillhollenMr. Robert Moatz and Mrs. Lisa

Yanolko-MoatzWilliam MonahanMrs. Robert MoorerMr. Joseph J. Mucerino, Sr.Mr. James L. Murray, Esq.Ms. Julie Anne Natale FentonNavar Applied Sciences CorporationNeubauer Family FoundationNHS Human ServicesMr. Dale and Mrs. Betsy NiceMr. Philip and Mrs. Carole NorcrossNovaCare Outpatient RehabilitationNovartis PharmaceuticalsNovick Brothers CorporationMr. and Mrs. Gary NovickMr. James O’BrienMr. and Mrs. Patrick O’HareMr. B. and Mrs. Elizabeth OwensPA Power & LightParkway Corporation

Passion Vines Wine & Spirit CompanyTrena L. Pelham, MDPenn Jersey Paper Co.Pepper Hamilton, LLPMrs. Michele PerezMr. and Mrs. Jeff PettyMr. Larry and Mrs. Charlene PezzatoMr. Rajan S. PhandaMiss Pamela M. PhelanPhiladelphia EaglesPhiladelphia Electric CompanyPhiladelphia Electrical Equipment Co.Philadelphia PhilliesMs. Carolyn A. PicconeThe Pickard FamilyMr. Albert N. Pickles IIIRobin Liskoski-PireePJM InterconnectionMr. Jim PlousisPMB RotaryMiss Julie Lynn PoeschelMr. Daniel and Mrs. Margo PolettMs. Kelly PossingerMs. Jessica Brooke Postupack Preferred SandsPREIT (PA Real Estate Investment Trust)Mr. and Mrs. David PresselMr. and Mrs. Marshall PrinceProfessional Capital Services LLC (PCS)Mr. and Mrs. Donald PuseyMr. Frank G. QuartoQuestcor PharmaceuticalsQVC, Inc.RadianThe Rainey FamilyRancocas Anesthesiology, P.A.Ransome CatDr. Eric and Mrs. Kim RatnerThe Raudenbush FamilyRed RobinMr. and Mrs. Gene ReidReilly, Janiczek, McDevitt P.C.Reuben and Mollie Gordon FoundationMr. Scott and Mrs. Roberta RichardMr. John Richmond


Ride-Away Handicap Equipment Corporation

Mr. Charles and Mrs. Melissa RobertsMr. and Mrs. Jeffrey RoesMr. Charles A. RowlandMs. Jennifer L. RozoMr. and Mrs. Robert RubinMr. Frank Rugienius Ms. Linda J. McAleer and Mr. Maitlon

RussellFrank C. Sabatino, Esq.Mrs. Kelly J. SaboldMr. Michael SalinSaul Ewing, LLPMr. Randall and Mrs. Nora SchenkMs. Peggy Scheule Mr. Timothy ScheveMrs. Brenda R. SchuckMr. Christopher M. ScofieldMr. Robert W. SeckingerSEI InvestmentsThe Sergent FamilySeymore and Helen Ann Rubin

FoundationShannon Outdoor Advertising Inc.Dr. Edward and Mrs. Clare SheehanMs. Molly D. Shepard and Mr. Peter J.

DeanThe Sheroff FamilyShire Us Inc. (Shire Pharmaceuticals)Shore Memorial HospitalMr. Robert J. ShraderSignature HVAC, Inc.Mr. Daniel B. SilverbergMr. John SkelnikSKF USA, Inc.Smith Mack & Company, Inc.Mr. Al SmithMr. Gregory L. SmithThe Smith FamilySmitHahn Company, Inc.Ms. Diane Snowden Dr. Randall William Snyder IIIMr. Edward J. SolomonSouth Jersey Federal Credit Union

Mr. and Mrs. Robert SpiresSt. Luke’s Hospital & Health NetworkMs. Elizabeth StewartMr. Mark StielowMr. Sean and Mrs. Carolyn StonelakeEd and Linda StrebMr. Frank Striffling and Dr. Carla

NarducciSubaru of America Foundation, Inc.Suelle CorporationMrs. Jacalyn M. SullivanSun FederalMr. and Mrs. David SwingleSykora Family Charitable FoundationT.W. Cooper InsuranceMr. and Mrs. John TaleseDr. Chris A. TelehaMr. Marc and Mrs. Kathleen TellierTemple University School of MedicineMr. Bruce E. TerkerTeva PharmaceuticalsMr. & Mrs. John ThalheimerThe Air Products FoundationThe Argus FundThe 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 FundThe John F. Scarpa FoundationThe Karen and Herbert Lotman

FoundationThe Keller Family Charitable TrustThe Portmann Family Charitable FundThe Union League of PhiladelphiaMs. Dolores Thomas Titan DisposalToll Bros Inc.Tozour Family FoundationTraci Lynn JewelryTraffic Planning & Design, Inc.The Traviline FamilyMs. Susan Tressider

Mr. and Mrs. Stephen TullmanMr. Eric TweerLaura Grossi-Tyson and Jeffrey TysonUGI CorporationUnited Security Assurance Inc.University of PennsylvaniaUniversity of Pennsylvania Health SystemUPSV&S PizzeriaRenaat and Daisy Van den HooffMr. Edward VarleyMr. Jeff and Mrs. Peggy VaughanVCI MobilityMr. and Mrs. Tinkham VealeMr. Richard and Mrs. Johnette VenneMr. Gerald P. VerbruggheViropharma IncorporatedMr. John and Mrs. Heather VolpeVynamicW.W. Smith Charitable TrustMr. Michael S. WarnerMr. Thomas E. WartenbergThe Weber FamilyMr. Paul and Mrs. Marilyn WeintraubMs. LeaAnne WelshMr. Andrew Whelan Mr. Fred G. White The Whitmire FamilyMs. Liz WidemanDr. Sankey and Ms. Constance WilliamsMr. Peter F. WolfMs. Jacquie O. YoungMr. 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 n nationalMSsociety.org/pae

ConneCt with US online: facebook.com/greaterdelMS

@greaterdelMS

youtube.com/nmsspae

pinterest.com/greaterdelvalMS

This course doesn’T muck around.

June 8 & 9, 2013This 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

MSConneC tion€¦ · strategies to accelerate treatments for progressive forms of MS. Leading experts across all the major research areas set priorities for moving forward. They

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