GREATER DELAWARE VALLEY CHAPTER
M O V I N G T O WA R D A W O R L D F R E E O F M S | 2 0 12 • I S S U E 1
MULTIPLE SCLEROSIS destroys connections inside us. It disconnects the mind from the body and people from each other. But what if we could defy this disease with the very thing it seeks to destroy: connections? Would we share more knowledge? More questions? More answers? More hope? Maybe, by connecting enough small victories, we could win some really big ones. CONTINUED ON PAGE 6
INSIDE THIS ISSUE
MS Awareness Week PageS 8-9
Adaptive gardening Page 10
Researchers need you Page 13
Face of MS: Patti Dille PageS 26-27
1-800-548-4611 Publication of the National Multiple Sclerosis Society Greater Delaware Valley Chapter 30 South 17th Street, Suite 800 Philadelphia, PA 19103 Chair Brian DiDonato
President Tami Caesar
Vice Chairs Valli Baldassano Larry Kane Marianne Jackson
Vice President, Communications Kevin Moffitt MSConnection Editor Yarissa Reyes
Upcoming events To register for these or other events, visit calendarMS.org. March 12-18
MS Awareness Week
THURSDAY, March 22
Employment Teleconference Series: Don’t Do It Alone: Employment Resources and Professional Networking
THURSDAY, March 22
MS Community Outreach Day – Philadelphia The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society is dedicated to creating a world free of MS. © 2012 National Multiple Sclerosis Society, Greater Delaware Valley Chapter
MSConnection welcomes letters to the editor. Send letters to pae@nmss.org or the address above. Include your name and a phone number or email address where we can reach you, if necessary. Please note: we may edit your letter for length and content.
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MONDAY, March 26
MS Community Outreach Day – Chester, Pa.
TUESDAY, March 27
MS Community Outreach Day – Norristown, Pa.
TUESDAYS, APRIL 3 – MAY 29
LINKS Teleconference Series: LINKING you to information and tips on how to maintain your quality of life in the years ahead.
April 22, May 5 and May 6 Walk MS 2012
SUNDAY, May 6
Zumbathon® for MS
TUESDAY, May 8
Women Against MS (WAMS) Luncheon
Saturday, May 12
Family Fun and MS Awareness Day Camden Riversharks Eric, diagnosed in 2004
In brief Gilenya under safety review The European Medicines Agency (EMA) has started a review of the oral medication Gilenya® (fingolimod, Novartis) after reports issued in January that there have been 11 deaths among patients who received treatment. This review is in addition to the investigation currently underway by the FDA.
Tovaxin granted fast-track designation by FDA The experimental therapy Tovaxin® has been designated by the U.S. Food and Drug Administration as a “Fast Track Product” for the treatment of secondary-progressive MS. The designation may expedite its future review by the FDA after Opexa Therapeutics submits results of future phase III trials.
MS may cause changes in thalamus New research suggests that in addition to the disabling lesions it’s known to cause, MS also damages the part of the brain that affects thinking skills, motor function and the senses. People with MS had
MORE RESEARCH greater volume loss in the thalamus region than healthy patients. The investigators noted a correlation between the size of the thalamus and disabilities – the greater the loss in thalamus volume, the more disabilities the subject had.
MS: Not a disease of the immune system? A researcher from New York recently suggested that MS is not actually a disease of the immune system, but that it is caused by faulty lipid metabolism, in many ways more similar to coronary atherosclerosis (hardening of the arteries) than to other autoimmune diseases.
Visit us online at nationalMSsociety.org to stay on top of the latest MS research.
VITAMIN D Go to page 7 for the latest update on the Vitamin D MS Progression Impact Clinical Trial.
Muscle endurance tests can detect abormalities in the early stages of MS
18 months of progress on CCSVI studies Reports from seven multidisciplinary teams investigating CCSVI (chronic cerebrospinal venous insufficiency) in MS indicate that they are making good progress toward providing essential data and critical analysis as these two-year projects move toward completion. Already more than 800 people have undergone scanning with various imaging technologies being used by the studies.
Researchers have discovered that specific laboratory tests for leg muscle endurance and gait the pattern of movement while walking or running - are highly effective in identifying mobility deficits at the initial stage of MS. That’s important because with earlier identification of mobility problems, doctors would be able to implement early intervention programs that could make all the difference for those with MS.
TOLL FREE NUMBER 1 800 548 4611
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PRESIDENT’S MESSAGE
Two degrees of separation One of our chapter’s key priorities is to reach out to as many people as possible to raise awareness about multiple sclerosis and the need to get involved in our shared cause. In order to establish a baseline measure of awareness of the disease, we recently conducted a research study of area residents with the assistance of long-time board member Linda McAleer of the Melior Group and Research Now.
Tami Caesar, President
What we found out was quite surprising: more than one out of every two local residents knows someone living with multiple sclerosis and 21% have a close connection such as a good friend or family member living with the disease. We’ve all heard the term “six degrees of separation,” the idea that everyone is on average approximately six steps away, from any other person. With 50 percent of local residents having a connection to MS, for us it’s more like two degrees of separation. Whether it’s a family member, a friend, co-worker or neighbor – we all know someone affected by MS. As we celebrate National MS Awareness Week, March 12-18, take this opportunity to reach out to your personal connections and ask them to join the movement against MS. 4
JOIN THE MOVEMENT: nationalMSsociety.org/pae
Whether participating in an event, donating, volunteering or spreading the word, everyone can join our commitment to raise funds for and awareness of a disease that affects thousands of families in our area. In running shoes, on scooters, wheelchairs and strollers, thousands of local residents will partake in Walk MS this spring. This incredible event is designed for anyone and everyone who wants to make their mark against MS. Gather your friends, family members, coworkers and neighbors and join us at one of our 18 accessible, family-friendly community walk sites throughout our region. The funds raised through Walk MS have a direct impact in our community. We’re building ramps, providing financial assistance, giving rides to the doctor, funding homecare aides, sponsoring self-help groups and standing up for you when your insurance company says “no.” This is what Walk MS means to our community. And this is why it’s so important for everyone to get involved. I hope to see you there. Warmest regards,
Tami Caesar, President
VOLUNTEER
Lending a Helping Hand
GET INVOLVED
BY: KIMBERLY FOERST
Our work would not be possible without the dedicated volunteers who donate their time to help us create a world free of MS. The Greater Delaware Valley Chapter relies Bill Singer volunteers at on thousands of volunteers each many Society events year to help us with everything from administrative office duties, to speaking to legislators, to helping out at a fundraiser event and everything in between. We’re grateful to each and every one of you who have given even an hour of your time at a program, event, the office and more. It truly makes a difference. Bill Singer of Mullica Hill, N.J., can attest to that. In the last six years, he estimates that he’s volunteered upwards of 1,000 hours to our organization. “I know it’s making an impact helping people in need,” he said. People like his sister and her daughter, who were both recently diagnosed with MS. “It felt not fair,” he said. “That got me started.” Soon he began volunteering occasionally at the Society and at Challenge Walk MS.
Volunteering is a great way to make a difference in the lives of people living with MS and in your own life. Bill does it in part for “the soul changing satisfaction you get deep down inside by helping others.” Contact us at 1-800-548-4611 or email pae@nmss.org to learn how you can get involved.
NEW WEBSITE JUST FOR VOLUNTEERS We recently launched a brand-new website for our volunteers at VolunteerforMS.org. Check it out to learn about some of the many ways you can help this chapter reach its vision of a world free of MS.
“I always feel that I could, and should, do more,” Singer said. He’s not sure if it will ever feel like enough. “I might feel a little more comfortable when better treatments and a cure are in sight.” He encourages you to consider donating your time as well. “Anyone can volunteer,” he said. “It requires no special qualifications. There is something for everyone to do. All it takes is a commitment, which we all have the capacity to give. Volunteers can move mountains if we all work together. And the personal satisfaction one will gain helping others is tenfold the investment expended.” TOLL FREE NUMBER 1 800 548 4611
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FROM PAGE 1
What if everyone living with MS could connect with one another? With those who care for someone living with MS? Or with those who research ways to stop, restore or end the disease? Or those who provide medical care or treat the symptoms of MS? Or the people who raise awareness and funds to help create a world free of MS? What if everyone who cares about MS could join together in one place? Maybe, by connecting all of our knowledge, and hope, and experience, we can gain a new understanding of how to move forward.
CONNECT WITH OTHERS Starting March 12, you’ll be able to make meaningful connections – when, where and how you want – with easy access to the best content and resources the MS community can bring you. At MSconnection.org, you’ll learn about the topics that are most important to you, connect with people you want to connect with and have expert MS information and opinions right at your fingertips.
SHARE WHAT YOU KNOW Find, store and share meaningful updates, posts, videos, articles and other content about the topics you care about most. Connect with people, groups and discussions that relate to the topics that shape your world. Join conversations with others who share your experiences, challenges and interests, and put the best resources available to work for you, so you can move your life forward in the way that feels right for you.
Please bookmark MSconnection.org and visit the new MS Connection community on March 12!
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NEWLY DIAGNOSED SYMPTOMS
walking issues important to address
Susan Cohn-Child, diagnosed in 1995, walks with son Zach
Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.
Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty
Vitamin D project adds new sites The Vitamin D MS Progression Impact Clinical Trial, which is being funded solely by the Greater Delaware Valley Chapter, is expanding from eight to 12 sites. “People are quite excited by this trial,” explains Dr. Ellen Mowry, the lead investigator, from her office at John Hopkins University. In addition to Baltimore, there will be study sites in Philadelphia, St. Louis, Portland, New York and other major centers. Mowry is conducting a randomized, doubleblind clinical trial to determine whether highdose vitamin D added to standard therapy with glatiramer acetate (Copaxone ®, Teva Pharmaceutical Industries) reduces the frequency of MS relapses.
walking have fallen; for a third of them, a fall resulted in an injury. While 65% of those surveyed reported walking difficulties or trouble with balance, 40% “rarely or never” discussed the issues with their doctor. “Clearly we need to encourage and empower people with MS to discuss walking impairment with their doctor, including newly diagnosed patients who may be experiencing only mild problems with walking or balance difficulties,” said Nicholas LaRocca, PhD, vice president for Health Care Delivery and Policy Research at the Society. For more information and resources on mobility, visit the Living with MS section of our website, nationalMSsociety.org, or call 1-800-FIGHT-MS. In this trial, 172 people who have MS and are receiving standard glatiramer acetate treatment daily will be randomly assigned to take either 600 IU (the current recommended daily allowance) or 5000 IU of Vitamin D. Comparing these measures will show whether high-dose vitamin D supplements affects the course of MS in people who are taking a standard therapy. The study sites should start enrolling patients in the trial in the next few months. Of the $1.3 million project, we have funded more than $800,000 through donations from people like you. Your research-restricted contribution will help us meet our goal of funding this historic project. To donate, call Kristina McGraw at 1-800-548-4611. TOLL FREE NUMBER 1 800 548 4611
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MS AWARENESS WEEK
MS Awareness Week hits Greater Delaware Valley MARCH 12-18, 2012
T
he National Multiple Sclerosis Society is launching MS Awareness Week in markets across the country to commemorate our efforts in serving people with MS and leading the fight to find a cure. Here in the Greater Delaware Valley region, our chapter has a number of activities planned to raise awareness. We’re planning several ways you can get involved in MS awareness this spring and summer. Do one, a few or do them all!
Be a part of the MS Experience: We
Participants experience how symptoms can impair daily activities at an MS Experience booth at Walk MS 2011
plan to host an “MS Experience” booth at high traffic locations throughout the Greater Delaware Valley region to educate the public about multiple sclerosis and the complexities of the disease. It will also let people experience some of the symptoms of MS.
Spread the word: We’re
launching an awareness video produced by students from the Art Institute of Philadelphia 8
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featuring local people living with MS at different stages of the disease to showcase how symptoms can vary from person to person. Visit YouTube.com/nmsspae to view the video and share.
Be a part of NBC’s 10! Show: We’re
taking over the audience at NBC 10’s morning show on Monday, March 12. Tune in and watch as we educate the hosts and viewers about MS. 10! Show airs at 11 a.m. on NBC.
Become an MS Ambassador:
When going to your neurologist or medical appointments, take a look around the office and see if our Society materials are on display. Ask your medical professional if they would be willing to place our materials in the waiting room for everyone to see.
Write a letter to the editor:
Write a short letter to your local newspaper explaining why it’s important that everyone join the movement. You can find a sample letter on the Awareness Week page of our website, nationalMSsociety.org/pae.
Register for Walk MS: With 18
communities to choose from, fighting MS is as easy as taking a walk in the park. This event funds programs and services for people in your community each year, and it’s accessible to everyone. Register by calling 1-800-883WALK or online at walk4MS.org.
Please note: we apologize if this newsletter arrives
MS AWARENESS WEEK
Get Connected: Join the conversation at
MSConnection.org. See cover story.
volunteer needs.
Get filthy for MS: Join us on June 9 & 10 for MuckRuckus MS, an obstacle course adventure full of muck to slosh, slip and slide your way through! Register today at MuckRuckusMS.org/Philly.
Become an MS Activist: Take action
against MS by becoming an MS Activist. We have information about how you can make a difference in your local community by contacting your legislators. Check out our tool kit on the Take Action page of our website, nationalMSsociety.org/pae.
Donate your Facebook status: Update your status to
let your friends know about MS Awareness Week by posting “I fight MS by…”(participating in Walk MS, riding my bike in Bike MS: City to Shore, volunteering my time, etc.). Share our page with others and tell them to “Like” us! Facebook.com/ greaterdelMS.
Dance for MS: Running through the mud
not your thing? How about dancing? Sign up for Zumbathon® for MS on May 6 on the steps of the Philadelphia Museum of Art. Learn more at ZumbathonforMS.org.
Volunteer: The National MS Society is a
volunteer-driven organization, and that means we need your help to keep moving. We have opportunities available for people of all ability levels, skill sets and career backgrounds. Call 1-800-FIGHT-MS during MS Awareness Week to talk about how you can get involved or tell us more about yourself for future
after MS Awareness Week for some readers.
Participants danced to create a world free of MS in Zumbathon® for MS 2011
WE WANT TO KNOW Let us know how you celebrated MS Awareness Week 2012 by emailing pae@nmss.org. Be sure to include photos of your festivities. We may feature them in an upcoming issue of MSConnection!
MS AWARENESS WEEK KICK-OFF EVENT A Lawrenceville, N.J. business will kick off MS Awareness Week with a free event on Saturday, March 10 from 1–3 p.m. The event will offer food and drinks, music, cooking demonstrations, prizes and more. Bring your friends and family to learn more about MS and enjoy the fun. Register by emailing kim.roberts@hotmail.com or call 1-267-210-8025. MS Awareness Week Kick Off Saturday, March 10 • 1–3 p.m. Mrs. G TV and Appliances 2960 Route 1 North, Lawrenceville, N.J. TOLL FREE NUMBER 1 800 548 4611
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LIVING WITH MS
The DIRT on adaptive gardening Gardening is one of the most popular hobbies in the United States, one that can benefit people both mentally and physically, as well as provide fresh and healthy food. “Gardening gives me control over something in a situation where I don’t always have control,” says Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.” Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension office of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasizes. “There are lots of reasons to adapt. You can put a garden at your height – on a patio, balcony, railing, steps, cinder blocks, window ledge or tabletop you can roll up to.” Reiser points out that people need little more than a patch of ground to get started—and that patch of ground can even be in a container. Nowadays, there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact—and containers need less weeding,” Reiser points out. 10 JOIN THE MOVEMENT: nationalMSsociety.org/pae
GET PREPARED Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late in the day. Set up a shady rest area with a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and a cooling vest, or carry a spray bottle filled with cool water. (Call 1-800-344-4867 for information about cooling resources or visit msassociation.org/programs/cooling.) Set a timer to remind you when to take a break. Ergonomic gardening tools, such as addon handles for trowels or extendable hoes, can help make gardening tasks easier. Go to abledata.com and search for “garden tools” to get an idea of what’s available. Reiser suggests enlisting a buddy, such as a friend or volunteer, to help with tasks like hauling bags of potting soil. Local community gardens, botanical gardens or garden clubs may also offer communal space and resources. Search online for barrier-free, adaptive or accessible gardening or ask your public library if they have any books on the topic to get an idea of what’s possible. And then in a few months, enjoy the fruits – literally – of your labors!
LIVING WITH MS COMMUNITY
Books delve in the challenges of living with MS and persevering Shelli Lynn Ross was an engineering student at the University of Illinois when she was diagnosed with MS at the age of 19. The one time basketball player, sprinter, aerobics teacher and star student went from being extremely independent and active to using a wheelchair and needing daily assistance. But her faith in God has kept her. She could have given in to her suffering, but instead Shelli earned her engineering degree and went on to get her master’s degree and write the book, “Successful Suffering - Part One Transformation: From Fear to Faith.” In the book, Shelli talks about her struggles with being diagnosed with MS, how her faith kept her going and the blessings she received through her experience. “Successful Suffering” is published by CrossBooks Publishing and is available at bookstores nationwide.
Tracy A. Todd has lived with neurological illness since the tender age of 12. This author, poet and MS ambassador excels despite suspected childhood epilepsy, adolescent acute migraines and her more recent MS diagnosis. Tracy holds a Bachelor of Science degree in Information Systems, but prefers designing and creating art for arts’ sake. An MS advocate, she is actively involved with the National Multiple Sclerosis Society and serves as a facilitator for a San Francisco Bay Area African-Americans with MS group. She published the book, “When the Body Says No – A Learn, Laugh, Love Story,” a memoir in which she offers hope, strength and inspiration through her accomplishments and perspective, which reflect her unyielding and contagiously positive attitude – “I have MS, MS does not have me!” “When the Body Says No” is published by Outskirts Press and is available at bookstores nationwide.
Ten Years. One Mission. Countless Stories. OCTOBER 13-14, 2012 Register today! Challengephilly.org • 1-800-883-WALK TOLL FREE NUMBER 1 800 548 4611 11
INTERNSHIPS
Chapter welcomes new interns this semester We’re happy to welcome the following students as part of our internship program this semester. These students support chapter staff in planning, cultivating, marketing and other duties that provide them with lasting skills and contribute to the success of the chapter. John Combs is a junior student from Mastery Charter High School. John, who is involved in student government, will be working to get legislators out to the Walk MS sites this spring. Christiana Gervasoni researched health-care reform in Pa. and N.J. during her first semester with us and created a presentation for use in outreach and education. This semester she is supporting our advocacy efforts at the Public Policy Conference in Washington, D.C.
Gary Rettberg is a public policy intern currently developing a template as a way to organize and develop connections with local legislators. He also created social media pages for the Pa. and N.J. Collaborative Action Network. Lisa Shaffer assists the communications department in publicizing the chapter’s events, increasing public awareness of challenges people with MS face and making connections with the local media.
Joseph McKenna is also returning for a second semester with the chapter, researching current legislation in Pa. He is also completing a toolkit for county captains on accessibility of polling places.
Trile Tran is supporting the information technology department by taking inventory of all hardware equipment including computers, phones and printers and creating a tracking system.
Meghan Myers is our first graduate level public health intern. She is working with our programs and services department to design and implement a new program for
Shirley Williams is supporting Walk MS by reaching out to past participants to remind them to register, researching potential new sponsorships and in-kind donations and supporting the Walk MS staff and team captains.
our clients.
If you or someone you know is interested in our internship program, please contact us at 1-800-548-4611 or email pae@nmss.org. 12 JOIN THE MOVEMENT: nationalMSsociety.org/pae
RESEARCH
Researchers Need You Researchers are committed to finding out what causes MS and how to cure it. People living with the disease may hold the key, and without their participation MS research would come to a standstill. People with MS, and sometimes family members, can make a difference by donating their DNA from blood samples and by volunteering for clinical treatment trials and other studies. They can also make arrangements to donate their brain and spinal cord tissues.
Participate in Clinical Trials Clinical trials are scientific studies designed to test the safety and efficacy of new agents or regimens for treating disease. Without people with MS who are willing to serve as volunteers in these studies, we could not look forward to new and better therapies.
Participate in Genetic Studies Researchers around the world are collaborating to find the genes that make people susceptible to developing MS and other autoimmune diseases. These studies are fed by the participation of people with MS and their family members who donate blood samples from which DNA is derived.
Donate to Tissue Banks Two MS tissue banks are supported by the National MS Society to provide researchers with brain and spinal cord samples from people who had MS in their lifetimes, as well as from people without MS. It is important to plan in advance to arrange this important gift. In addition, the Accelerated Cure Project has
NOW
An MS Research Revolution an MS Repository for biospecimens and data from people with MS who wish to contribute to research now.
Pregnancy Registries Since MS primarily affects women of childbearing age who can become pregnant unintentionally, it is extremely important to acquire information about how interferon beta medications can affect pregnancy and unborn children. In August 2002, the Food and Drug Administration issued guidelines requiring the manufacturers of these medications to develop pregnancy registries to monitor women who have taken one of these drugs within a week of becoming pregnant or while they were pregnant.
Surveys and Other Research Studies The Society is committed to delivering accurate and reliable information to everyone affected by MS, and subsequently reviews many requests for participation in MS surveys. The surveys/studies are being conducted either by investigators seeking to answer scientific or health policy questions about MS, or by pharmaceutical or medical device companies conducting market research efforts to develop or improve products for people with MS. For more information, call 1-800-FIGHT-MS or visit nationalMSsociety.org. TOLL FREE NUMBER 1 800 548 4611 13
ADVOCACY
Keeping up with health reform BY KIMBERLY CALDER
With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up – particularly on the state level. Here are some Society-vetted sources for reliable and up-todate information about the impact of the ACA in our area. The National Conference of State Legislatures at ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor. The National Academy for State Health Policy at statereforum.org offers an online network called State Refor(u)m, which enables direct connection and information-sharing between policymakers, activists and others working on health reform implementation. The federal government’s official site on the ACA at healthcare.gov is the best 14 JOIN THE MOVEMENT: nationalMSsociety.org/pae
source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more. To follow changes in ACA legislation and other public policy issues that specifically affect people with MS, check in with Society MS Activists at Twitter @MSActivist and visit MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at nationalMSsociety.org/ ACAFAQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy. MS Activists help add MS to Compassionate Allowances list Thanks to the hard work and testimony of Society activists, Dr. John Booss and Yvonne Brown, an aggressive form of MS now qualifies for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. “Malignant MS,” a rare but severe and life-threatening form of MS which leads to disability or even death in as little as a few weeks or months after symptoms first appear, has been added to the Compassionate Allowances List after testimony at the March 2011 hearing.
ADVOCACY
N.J. Multiple Sclerosis Task Force Established
O
n January 9, Governor Chris Christie (R) signed the New Jersey Multiple Sclerosis Task Force Bill. This bill creates a statewide task force in N.J. that will look at how multiple sclerosis impacts residents living with multiple sclerosis and will make recommendations, both regulatory and legislatively, to address those issues. Under the legislation, S-2212, the task force will develop strategies to identify and address the unmet needs of individuals with MS in order to provide them with greater access to various treatments and other therapeutic options. The task force will focus on issues impacting the productivity and independence of individuals with MS. It will also review issues impacting emotional, social and vocational challenges of persons with MS.
The task force would report its findings and recommendations to the governor and the Legislature no later than 12 months after its initial meeting. The task force would dissolve upon the issuance of the report. We’d like to acknowledge the work of the N.J. Government Relations Committee for their efforts in advocating for this legislation. Members of the committee include Dennis Dougherty, Don Elsas, Mickey Bassman, Chuck Bassman, Dr. Sondra DiAntonio, Pamela Trosino and Pat Zimmerman. PHOTO BY C. TIEFENTHOLER
As a result of hearing the story of one of our Walk participants, State Senator Fred Madden (D-Gloucester, Camden) introduced the MS Task Force bill and has become a key champion in the MS movement. “Those suffering from multiple sclerosis endure pain and constant challenges every day and yet, there is so little we know about the disease,” said Madden. “This task force is a cost free, common sense measure that will provide assistance to the thousands upon thousands of New Jersey residents who struggle with multiple sclerosis every day.” The 14-member task force would include state health officials, representatives of the National Multiple Sclerosis Society and individuals living with MS, among others.
Don’t just ride, Bike MS. Bike MS: City to Shore Ride 2012 /// September 29 & 30 Register today MScycling.org /// 1-800-445-BIKE TOLL FREE NUMBER 1 800 548 4611 15
ADVOCACY
MEET YOUR LEGISLATOR
Senator Fred H. Madden, Jr. (D) New Jersey Legislative District 4
S
enator Fred Madden was elected to the Senate in 2003 and re-elected in 2007. Prior to his legislative service, he was a career law enforcement officer and currently serves as dean of the Police Academy at Gloucester County College. A champion for people living with MS in N.J., Senator Madden was instrumental in the passing of the New Jersey Multiple Sclerosis Task Force Bill. 1. What do you think government can or should do to provide people with disabilities with the care they need? We have an obligation to assist individuals with disabilities so that they can meet their true potential. During my time in the Legislature I have met several people who were suddenly faced with either a disability themselves or through someone in their family. In order to make ends meet and face daily challenges, they turned to the state for help. Government is supposed to provide a safety net to catch individuals from falling and I believe that this is a critical role for the state to play.
16 JOIN THE MOVEMENT: nationalMSsociety.org/pae
2. Why is it important for people to get involved in advocacy? All people have a story to tell. They are experts in their own lives and they can provide us with insight not only into problems with the system, but very often these individuals, through advocacy, provide solutions to fix the problems. 3. Do you have a connection to MS? I do not have a direct connection, however, a few years ago I participated in a small charity walk for MS. Over the years, the number of participants has grown and as I learned more of their stories I realized that there was still so much we just didn’t know about MS. It was one of the driving forces that led me to sponsor the legislation establishing the task force. 4. Why was it important to form the N.J. Multiple Sclerosis Task Force? There are hundreds of thousands of people living with MS. They endure pain and constant challenges every day and yet, there is so little we know about the disease. This task
ADVOCACY
force is a cost free, common sense measure that will provide assistance to the thousands upon thousands of New Jersey residents who struggle with multiple sclerosis everyday.
PRESENTED BY:
5. What’s the best way for constituents to work with you? I encourage people to reach out to me in person, either in Trenton or in my district at 856-232-6700. If you are unable to get in touch with me directly, my staff will be more than happy to work with you.
Public Policy Conference Essay Winners Each year, volunteer MS activists from around the country gather in the nation’s capital to learn more about the National MS Society’s policy priorities and talk with legislators about why those issues are important. We congratulate our essay contest winners, who will represent their states at the 2012 Public Policy Conference. Our New Jersey winner is Lee Domenico, and our Pennsylvania winners are Allison Coia, Sandy Carter and Jennifer Luis. We can’t wait to hear all about this year’s conference from our representatives. Stay tuned for a recap of the conference to be featured in our next issue.
The muckiest time you’ll ever have for a good cause. June 9 & 10, 2012 Newtown Square, PA This event is an unforgettable two days of fun in the great outdoors featuring a muck-filled obstacle course for teams to slosh, slip and slide through while helping to create a world free of MS.
REGISTER TODAY!
1-800-548-4611 or MUCKRUCKUSMS.ORG/PHILLY TOLL FREE NUMBER 1 800 548 4611 17
FUNDRAISING
2012 Women Against MS Luncheon to honor Dr. Amy Gutmann The 10th annual Women Against MS (WAMS) Luncheon, presented by AmeriHealth Mercy Family of Companies, will honor local leader Dr. Amy Gutmann with the Woman of Spirit Award at the 2012 event. Gutmann was named president of the University of Pennsylvania in 2004. She has authored and edited 15 books and has published more than 100 articles, essays and book chapters and continues to teach and write on ethics and public policy, democracy and education. In her inaugural address, Gutmann launched the Penn Compact, which has increased access for the most talented students regardless of socioeconomic background and replaced loans with grants for
all undergraduate students at Penn who require financial aid. The National MS Society has awarded Penn’s top-ranked Perelman School of Medicine over $6 million in research grants since 2004. In addition to conducting international research trials for the treatment and cure of multiple sclerosis, Penn’s Multiple Sclerosis Center provides consultation and care for more than 3,000 patients yearly. The luncheon, hosted by Kathy Orr of CBS3, will also include a keynote speech by Zoe Koplowitz. Zoe is an award-winning author and motivational speaker. She has completed dozens of marathons despite her diagnoses of MS and diabetes.
Women Against MS Honoree Dr. Amy Gutmann President of the University of Pennsylvania
Women Against MS Keynote Speaker Zoe Koplowitz Award-winning author and motivational speaker MARK YOUR CALENDAR:
RESERVE YOUR SEATS NOW! Purchase your tickets online at nationalMSsociety.org/WAMS or contact Maria Oberst at 1-800-548-4611 or maria.oberst@nmss.org. 18 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Tuesday, May 8 11:30 a.m. - 1:30 p.m. Loews Philadelphia Hotel 1200 Market Street Philadelphia, PA 19107
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Tips for making healthy choices this spring BY: JACLYN FRANCESE SCHANTZ
As spring creeps up on us, we begin to realize that it is time to get out of the slump of sweet treats and sitting on the couch. ©RENE CUNNINGHAM Healthy eating is something we should be practicing as a part of our lifestyle all the time, but it is normal to fall into a winter funk. Now that spring is here, let’s get off the couch, toss the sweets and start making better, healthier choices. Do not let the rut we get into during the colder months keep you down. The more you move and the better you eat, the healthier you will feel.
1. Finding seasonal vegetables is the best place to start. Check out your
local farmers market for the best prices on veggies, such as asparagus, beets, string beans, fresh lettuces, peas and radishes. You can combine these items and keep an amazing salad in your fridge for easy access, or you can grill a chicken breast along with asparagus and string beans on the side. Grilled veggies are always delicious and of course healthy. Add bell
peppers and onions to make delicious shish kabobs with any meat or fish choice (just stick with leaner cuts).
2. Make sure you remember your fresh fruits, too. Apricots, cherries
and strawberries are all perfect choices for spring fruits. Adding citrus fruits to your diet is also a good idea. Lemons and limes add flavor without calories to water, and oranges are the perfect sweet treat that keeps you healthy. Do not forget that citrus is also great to help cut down water retention (which we all know we have).
3. Don’t forget the vitamin D.
Remember to keep foods rich in vitamin D as a vital part of your diet. Shitake and button mushrooms, salmon, tuna and eggs are all great choices and go great with all the fruits and vegetables already mentioned. Another great source of vitamin D is sunshine. I can not stress enough that as spring arrives we need to get outside and enjoy the fresh air. Going for walks and enjoying the blooming flowers will keep you active and moving. Plus, you are absorbing vitamin D as you enjoy the outdoors. TOLL FREE NUMBER 1 800 548 4611 19
COMMUNITY
Seventh grader raises funds for Walk MS When 12-year-old Olivia Laurel Gerstenbacher of Elmer, N.J. learned of her mother’s relapsing-remitting MS diagnosis six years ago, she felt like she needed to do something about it. She and her mother Christina formed a team to partake in Walk MS at Parvin State Park in Vineland, N.J.
Olivia with some of her fundraising gains in 2011
Olivia decided to raise her own funds for the event by asking teachers and friends to donate. She also came up with a unique way of fundraising for the team. This past year she rifled through her recycling bin and made coin drop containers to distribute around to local businesses, collecting over $300 in donations. “Olivia always takes the initiative and finds creative ways to raise money for the cause,” said mom Christina. “I am so very proud of Olivia. When she gets an idea in her head, she really puts her heart and soul into it until it comes to fruition. She is a very determined and dedicated young lady.” Olivia has also designed the team T-shirt on several occasions and is working on the design for this year’s tee. She’s already begun fundraising this year asking friends, teammates and teachers for donations as well as making and setting out her coin collections around town. Way to go, Olivia!
20 JOIN THE MOVEMENT: nationalMSsociety.org/pae
The Gerstenbacher family at Walk MS: Parvin State Park: dad Joseph, mom Christina, Olivia at 8-years-old, brother Samuel and sister Chloe
WAYS TO GIVE
Do It Yourself Fundraising gets boost These resources include a comprehensive toolkit that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable, where to hold it, publicity, finding sponsors and volunteers, tips for the day of the event, FAQs and much, much more.
Upper Township Bay Row A family in Florida who says they like to “eat, drink and throw a good party” hosts a casino night on behalf of the National MS Society. A fellow in Minnesota sponsors an annual four-day event for four-wheeling enthusiasts to ride on trails in the middle of the woods. Other folks have hosted golf tournaments, sailing races, dinner parties, bake sales, hoops for hope basketball and even a strongman competition, a bike ride in high heels and a tabletop decorating contest. A Wall Street– based poker tournament raised over $850,000, but a $200 bake sale is equally appreciated. Diverse as they are, these events are all Do It Yourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at doityourselfMS.org, “which gives the same resources as we give to Bike MS and Walk MS participants,” according to Rachael Nuwash, DIY project manager for the Society.
People can find out what lessons others have learned and how to create a committee—a core group that will support the effort and whose talents can be utilized. (For example, a friend who’s a graphic designer can design the invitation.) The toolkit also includes flyers, badges and email signature images to download. “The online tools are very intuitive,” said Nuwash, so organizers can easily and quickly reach out to friends, family members and co-workers. “The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something now.”
Bertie’s Belt Sander Race 2011 TOLL FREE NUMBER 1 800 548 4611 21
COLUMN
but you look so good. BY: JACLYN FRANCESE SCHANTZ “But you look so good.” This is a universal phrase, the phrase heard around the MS community no matter who you are. We have all heard it and have all had those thoughts of ‘if you only knew.’ On February 14, 2011, I was diagnosed with multiple sclerosis. I have never been ashamed or felt the need to hide my diagnosis; in fact, I am an open book to anyone who wants to know more. I have heard that phrase so many times, but this year has been about so much more than just hearing that I look great since I am ‘sick.’ This past year has been a learning experience for me; however, it has been tough and filled with tears and laughter and so many unanswered questions. Right after I was diagnosed, I jumped right in and wanted to learn more, know everything and try to understand what would happen to me. The downside is that this disease is so unpredictable and unfortunately you cannot always get straight forward answers as to what is happening to your body. My emotions 22 JOIN THE MOVEMENT: nationalMSsociety.org/pae
have gone insane and I have gone through bouts of depression, moments of tears for no reason and the feeling that I am all alone. But then I realized that I am not the only person who has been diagnosed with MS. In fact, I grew up knowing about the disease from my father who was diagnosed when I was three and my sister who was diagnosed when I was 18. The difference is that I only knew about it and never felt the emotional and physical effects that they live with day in and day out. Now I get it. Now I understand what it is like to wake up and take a moment before getting out of bed or to have to walk a little slower some days because my leg just won’t cooperate. Even just knowing that you have a disease and you cannot predict when you will feel awful or when you feel great is something that plagues all of us. It’s a day by day process, but it gets easier to live with as you begin to accept the fact that this is a part of your life. I have had so many changes in my life this past year. Between being laid off, attempting to find the right medications for me and getting divorced, I have learned more than most people do in five years. I learned that I can appreciate
all the people in my life, those who come and go and those who stick around. I learned that it is okay to cry when you are frustrated and that all the little nonsense just doesn’t matter anymore. I now look at all the little things in my life that are amazing and great and smile each time I think about them. I have also met some of the most amazing people who are a part of the MS world -- those living with MS, the spouses and families of those living with MS and, of course, all the people who make it a point to be part of your life, no matter what. My biggest lesson this year has been that I now realize MS does not define me, it is not going to control my life and it will never keep me down. If nothing else, I am stronger and more appreciative, and I feel like I have so much more to live for. I will continue to learn more and more everyday about myself, what I can handle and more about living with MS. This year on February 14, the one year anniversary of my MS diagnosis, I got a tattoo that has so much meaning to me. I had the MS
Jaclyn showing her new tattoo ribbon put on the inside of my right ankle. My right side is most affected and this tattoo fully reflects and signifies not that I have a disease, but that I am lucky enough to have realized this is not a death sentence but an amazing learning experience. Now when I hear the phrase, “But you look so good,” I simply say thank you and smile.
Gadget Corner: Symptom Tracker Software Whether you’ve had MS for years or are still trying to get your doctor to make a diagnosis, you’ve probably read or heard recommendations to keep track of your symptoms. This is excellent advice in theory but can be difficult in practice, trying to write or type your entries every day, and even worse trying to relay all that information to your doctor at the next visit. Symptom Tracker Software© allows you to track your symptoms (or lack of symptoms) on a daily basis without writing tedious long-hand journal entries. You won’t even have to type most entries – just point and click. Then click a few more times to generate concise summary reports for your doctor. This is an excellent way to record, store and share information about your symptoms, saving you time and allowing you to be an active participant in your diagnosis, treatment or disability claims. To download the software for free, visit symptomtrackersoftware.com. TOLL FREE NUMBER 1 800 548 4611 23
GOLDEN CIRCLE
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 and organizations 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, private lab tours and much more. The 1830 Family Foundation A.J. Catagnus, Inc. Actelion Clinical Research, Inc. Mr. Justin C. Adams Mr. Edward R. Aichele III Mr. Stephen A. Albertini American Infrastructure Dr. Melissa N. Anderson Mr. Randall Bair Mrs. Cristina M. Baker Ms. Jane Balascki Dr. Marisa F. Baldassano Dr. and Mrs. Allen Bar Valli Baldassano and Lee Bellapigna Mr. Bill Bankes Barretta Tile and Stone, Inc. Mr. and Mrs. C. Minor Barringer Mr. Robert W. Barth, Jr. BDP International Mr. and Mrs. Jack Beiter Beneficial Bank Mr. and Mrs. Thomas Bennett Mr. Michael J. Betsch Ms. Lynn Biehn Mr. John Blakeley Mr. Jonathan F. Bloom Blueyes Foundation Bob and Irene Haver Fund Bob Danzeisen, Inc. Bohler Engineering, Inc.
Mr. Rejean Boivin Mrs. Shelley Boyce Brandywine Realty Trust Ms. Adean Bridges Mr. Todd and Ms. Anita Brodsky The Bronstein Family Mr. David and Mrs. Caryn Bross Mrs. Melissa M. Brown Mr. and Mrs. Lawrence Brownstein Mr. William Bujalos Mr. John Charles Butts Ms. Tami Caesar and Mr. Steve Karlovic Calista Grand Canon Business Solutions Carr & Duff, Inc. Mr. Louis Castiglioni Catholic Health East CC Dahms LLC Cephalon, Inc. Mr. Joseph P. Cherone Christine McCafferty Community Emergency Fund Citadel COBHAM Sensor Systems Mr. Willam and Mrs. Rebecca Coffey Mr. Thomas and Mrs. Michele Coghlan
The Coghlan Family Abbi L. Cohen, Esq. Nate and Terri Cohen Mr. Jason Connell Mr. Timothy Connors Conrail Ms. Carol Ann Corcoran Mr. Robert J. Corrigan Corvette Club of Delaware Valley Mr. Joseph John Costello Crayola Creative Financial Group, LTD Mr. Americo Da Corte Mr. and Mrs. Allan Dabrow Dantino, Inc. The Darroch Family Ms. Adah Davis Day & Zimmerman, Inc. Mr. Nicholas J. DeBenedictis Mr. and Mrs. Roger J. Dennis Ms. Barbara Helen Deptula Mr. and Mrs. Albert DeRitis Devon Health Services, Inc. Mr. and Mrs. Brian DiDonato The DiPiano Family Mr. Daniel P. Doritc Drexel University Dynamic Images, Inc. Mr. Robert B. D’Zuro E-Finity Distributed Generation, LLC Mr. James A. Egan
24 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Dr. Howard Eisenberg and Ms. Susan Sandler Ms. Mildred Eizen Embassy Bank Emerson Group Ms. Elaine Emrick Mr. Charles A. Ercole The Essel Family Mr. David and Ms. Perri Evanson Evergreens Mr. Thomas and Mrs. Eleanor Everitt Exley’s Landscape Service, Inc. Terry and Susan Fadem Dr. Jessica A. Feldman Ms. Julie Anne Natale Fenton Ms. Roberta B. Fiorito Mr. Frank Floczak III Fox Rothschild LLP Frank C. Videon, Inc. Fraternal Order of Police Lodge The Frederick H. Bedford Jr. & Margaret S. Bedford Charitable Foundation Mr. Joe and Ms. Amy Frick GenOn/Reliant Energy Gerald B. Shreiber Foundation Gergo Plumbing & Heating, Inc. Mr. and Mrs. David Gerson Ms. Mary Ann Gindlesperger Giorgio Foods, Inc.
Mr. and Mrs. Jonathan Gispan Mr. Marc Golaszewski Mr. Howard Goldstein, Esq. Mr. Kurt Daniel Graff Ms. Rosemarie Greco and Ms. Anne Morrissey Mr. William J. Griest Drs. Kent and Lori Griswold Mrs. Kelly L. Grogg Laura Grossi-Tyson and Jeffrey Tyson Dr. Renu Gupta Mr. Navin K. Gupta Mrs. Tracey McDevitt Hagan Mrs. Theresa Halczak Mr. Thomas R. Hall Ian and Caryn Harris Ms. Nancy J. Harris Mr. Paul D. Hendler Mr. Ted Robert Henke Henkels & McCoy, Inc. Mrs. Barbara J. Higgins High Street Restaurant Concepts, Inc. Mr. and Mrs. Tom Hinton Dr. and Mrs. Bruce Hopper Ms. Donna L. Huber I.B.E.W. Local Union 98 ICON Clinical Research In memory of Edward J. Goodman Independence Blue Cross Mr. Timothy T. Irvine
NEWLY DIAGNOSED GOLDEN CIRCLE
Marianne Jackson and Shawn Kelly Janney Montgomery Scott LLC The Jennie Perelman Foundation, Inc. The John F. Scarpa Foundation Dr. Janet K. Johnston David Johnston Dr. David E. and Jennifer Jones Mr. and Mrs. Richard Josephs Judah Incorporated t/a Holland Floor Covering Mr. Dana A. Kaas Karen & Herbert Lotman Foundation Mr. and Mrs. Larry Kane Mr. Sol Katz Mr. Steven M. Katz Mr. and Mrs. Mitchell Kaye Mr. and Mrs. Robert E. Keith Jr. The Keller Family Charitable Trust The Kenney Family Keystone Helicopter Keystone Mercy Health Plan Robert and Kathy Kimmel Paul and Susan Kinmartin Klehr Harrison Harvey Branzburg LLP Mr. Carl Kopfinger Bradley and Pamela Korman Larry and Korin Korman KPMG LLP Eric Kraeutler, Esq. Mr. Jonathan G. Kraus Mr. Bradley A. Krouse Mr. Charles D. Kurtzman La Salle University Laborers’ Local Union 57
Mr. Michael and Dr. Jennifer Lambert Langhorne Rod & Gun Club, Inc. LBC Credit Partners, Inc. Mrs. Margie LefcoeMcClennen Lehigh Valley Health Network Mr. Stanley John Lesniak Ms. Kathy H. Levin Lockheed Martin Corporation Mr. Robert Joseph Lucci Mrs. Helen T. Madeira Honorable Nicholas J. Maiale Mrs. Aditi Malik Ms. Beth A. Malikowski Ms. Kayla Mann Margaret J. Jacobs Foundation Ms. Linda J. McAleer and Mr. Maitlon Russell Mrs. Cheryl I. McClenneyBrooker Mrs. Kristina McGraw Ms. Florence M. McLeary Mr. Richard McMahon Meranze and Katz PC Merck & Co., Inc. Mr. John P. Middleton William Monahan Mr. William H. Morgan Dr. Matthew Moront Mr. Joseph J. Mucerino Sr. Neubauer Family Foundation Mr. Philip and Ms. Carole Norcross Mr. James O’Brien Mr. B. and Mrs. Elizabeth Owens PA Power & Light Paoli Malvern Berwyn (PMB) Rotary Club
Mr. Seth and Mrs. Rachel Park Passion Vines Wine & Spirit Company Penn Therapy Associates, Inc. Pepper Hamilton LLP Mrs. Michele Perez Mr. and Mrs. Jeff Petty Mr. and Mrs. Larry Pezzato Miss Pamela M. Phelan Philadelphia Academy Charter School Ms. Carolyn A. Piccone The Pickard Family Mr. Albert N. Pickles III Pocono International Raceway Miss Julie Lynn Poeschel The Portmann Family Charitable Fund PREIT Press of Atlantic City Mr. and Mrs. David Pressel Mr. and Mrs. Marshall Prince PRWT Services, Inc. Mr. and Mrs. Donald Pusey Mrs. Lisa Racobaldo Mr. Brian Radwell Ransome Cat Mr. Brian George Rapp Red Robin Dr. Joanne M. Regina Reuben and Mollie Gordon Foundation Mr. Scott and Mrs. Roberta Richard Mr. John Richmond Mr. Charles and Ms. Melissa Roberts Mr. Gary Rosenberg Mr. Frank Rossi Mr. Alfio Rossillo Mr. and Mrs. Robert Rubin
Frank C. Sabatino, Esq. Mr. Bret Sabold Mr. Brian and Ms. Ellyn Sands Ms. Natalie Scarantino Mr. Randall H. Schenk Mr. Timothy Scheve Mr. and Mrs. Ronald Schneider Mrs. Trisha M. Schneider Ms. Molly D. Shepard and Peter J. Dean Shore Memorial Hospital Siemens Caring Hands Foundation Signature Solar Mr. Al Smith Mrs. Leslie F. Smith The Smith Family South Jersey Federal Credit Union St. Luke’s Hospital The Stielow Family Mr. Sean and Mrs. Carolyn Stonelake Stradley Ronon Stevens & Young, LLP Mr. Brett and Mrs. Joanne Straub Mr. Frank Striffling and Dr. Carla Narducci Subaru of America Foundation, Inc. Mrs. Jacalyn M. Sullivan Mr. and Mrs. John Talese Mr. Bruce E. Terker Mr. Jeffrey M. Tertel Titan Disposal Toll Bros, Inc. Mr. Jay Tolson Transport Workers Union Local 234
Ms. Lisa Traviline Ms. Susan Tressider Mr. Erich and Ms. Rita Truax Ms. Christine J. Trux Mr. and Mrs. Stephen Tullman Mr. Mark Tumelty Mr. Thomas Twardzik Mr. Eric Tweer United Security Assurance University of Pennsylvania Health System V&S Pizzeria Valley Preferred Mr. Edward Varley Mr. Jeff and Mrs. Peggy Vaughan VCI Mobility Mr. and Mrs. Tinkham Veale Renaat and Daisy Van den Hooff Mr. Richard and Mrs. Johnette Venne Mr. Gerald P. Verbrugghe Viropharma Incorporated Ms. Maureen Walsh The Weber Family Mr. Paul and Mrs. Marilyn Weintraub Ms. Jacquie O. Young Mr. and Mrs. Benjamin Zuckerman
*This list reflects donors from the start of our campaign in January 2011 through December 2011. Our apologies for any inadvertent errors or omissions.
TOLL FREE NUMBER 1 800 548 4611 25
FACE OF MS
Face of MS: Patti Dille When Patti Dille was diagnosed with relapsing-remitting MS in 1990, her symptoms included optic neuritis in her left eye and numbness in her fingertips. Over the last seven years, the 53-year-old Telford, Pa. resident developed secondary-progressive MS and now has foot drop in her left leg. She learned to walk with the use of a cane, and then a walker. Despite this, she has always been determined to live her life as joyfully as possible and with a positive attitude. Here, she talks about the “MS monsters� in her life.
Last year, I decided to challenge myself by learning a new skill in order to keep my brain sharp. I chose to learn crochet. I worked with a friend who also has MS by watching instructional DVDs. At first, it was quite difficult to force my numb fingers to make a simple granny square, but I persevered. Soon, I was making baby hats, scarves and even an afghan. In a few months, our twopeople meeting in my house had grown to seven people reserving a room at the local library. Four of our members have MS, and I look forward to our meetings to work on new projects together and socialize. Recently, I have also begun a beginning crochet class with another friend of mine to expand my knowledge and be able to teach others in our group.
26 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Not too long ago, one of our new members introduced me to making Amigurumi figures. These are small crocheted stuffed animals or creatures. It quickly became one of my favorite things to do. One day while I was making a little orange monster, I realized that it could be used to represent MS. You see, when MS first entered my life, it was a terrifying monster. My life was changing and my future was uncertain. I was afraid. As time went on, I came to peace with my symptoms and learned to just take them as parts of me. The terrifying monster had gone from being gigantic and scary to the snaggletooth ball of yarn in my hand. These Amigurumi monsters are all different. Their variance in appearance represents how MS is different for each of us. They are not scary, but cute and easy to embrace. I enjoy creating these monsters and sharing them with others. Everyone needs to
find what brings them joy in their lives. Mine is making my MS monsters. I feel we all live with some negative monsters in our lives. Mine just happens to be MS. An MS diagnosis can be very challenging. It does not have to overwhelm our lives. I want others to know that they can master their own MS
monster. I want others to know that they do not have to be afraid of their MS monster and do not have to let their MS monsters rule their lives. We all need to get to know our MS Monster. This way we can shrink this monster’s impact on us.
Counseling service available The Greater Delaware Valley Chapter has a counseling service available for people with MS, their significant others and their families. The chapter will assist with co-pay assistance for up to 12 sessions. If you do not have insurance, the chapter can pay nearly one hundred percent of the cost. You may continue with your current counselor, or we can refer one for you. If you have a health insurance plan that covers counseling, we can make referrals to therapists who have experience working with individuals
with MS. If you do not have insurance, we can usually provide ten sessions with one of our counselors or a therapist at Council for Relationships. Our therapists offer in-person and phone counseling services. If you are not interested in traditional counseling, the chapter’s MS Navigators often provide emotional support. Also, our chapter supports group counseling efforts through our professionally-led support groups. For more information about this service, call us at 1-800-548-4611.
TOLL FREE NUMBER 1 800 548 4611 27
Free Matter for the Blind or Handicapped
30 South 17th Street, Suite 800 Philadelphia, PA 19103 ADDRESS SERVICE REQUESTED
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YOU CAN MAKE A DIFFERENCE! JOIN US THIS SPRING AT WALK MS 2012
Join 15,000 area residents who care about people affected by MS by participating, volunteering or recruiting walkers. This year we will hold 18 events on April 22, May 5 and May 6 in a community near you.
register today! walk4MS.org • 1-800-883-WALK