2011 Issue 4
Greater Delaware Valley Chapter
Finding Ways to Serve You Better The Greater Delaware Valley Chapter constantly strives to serve the MS community in ways that are impactful and make a difference to the 13,000 local families living with multiple sclerosis. To that end, we have developed programs and services that benefit not only our clients and their families, but the entire community.
INSIDE THIS ISSUE:
One of the ways the Society is expanding its services to the MS community is by providing health care facilities with community impact grants to increase access of MS care in underserved populations. These grants are awarded annually and are open to any nonprofit institution serving the MS population specifically.
Pregnancy and MS Page 8
New research on the horizon Pages 12-13
To be eligible John, diagnosed in 2001 for a grant, the institution must be providing a service for the benefit of people living with MS and it must not duplicate a service the Society already provides. The application process includes the submission of a grant proposal and an in-person presentation. The grant review committee takes in consideration how the proposed program will enhance delivery of services for people in the MS community and how it aligns with the Societyâ€™s strategic plan. Continued on PAGE 6
8-year old hosts bake sale fundraiser Page 22
Face of MS Pages 26-27
National Multiple Sclerosis Society Greater Delaware Valley Chapter 1-800-548-4611 30 South 17th Street, Suite 800 Philadelphia, PA 19103 Chair Brian DiDonato Vice Chairs Larry Kane Marianne Jackson
Vice President, Communications Kevin Moffitt MSConnection Editor Yarissa Reyes
President Tami Caesar MS stops people from moving. The National MS Society exists to make sure it doesn’t. We help each person address the challenges of living with MS. In 2010 alone, through our national office and 50-state network of chapters, we devoted $159 million to programs and services that improved the lives of more than one million people. To move us closer to a world free of MS, the Society also invested $37 million to support 325 new and ongoing research projects around the world. We are people who want to do something about MS now. Join the movement at nationalMSsociety.org. Early and ongoing treatment with an FDAapproved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health-care professional and contacting the National MS Society at nationalMSsociety.org or 1-800-FIGHT-MS (1-800-344-4867). ©2011 National Multiple Sclerosis Society, Greater Delaware Valley Chapter
MSConnection welcomes letters to the editor. Send letters to email@example.com 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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Upcoming events To register for these or other events, visit calendarMS.org. Thursday, January 12
Employment Teleconference Series: A 21st Century Approach to Job Searching: Webinar
Thursday, January 26
Employment Teleconference Series: Get Informed: Legal Protections in the Workplace
Friday, January 27
Center City Lunchtime Meet & Greet for the Newly Diagnosed
Thursday, February 9
Employment Teleconference Series: Managing Challenging Resumes
Thursday, February 23
Employment Teleconference Series: Reinvent Yourself
Thursday, March 8
Employment Teleconference Series: Home-Based Employment: What Employers Want
Thursday, March 22
Employment Teleconference Series: Don’t Do It Alone: Employment Resources Tracey, diagnosed in 2005
In brief Society launches $16 million in new research The National MS Society is committing $16 million to support 32 new MS research projects as part of its holistic and comprehensive strategy to stop MS in its tracks, restore function that has been lost and end the disease forever.
Phase III trial of oral teriflunomide has positive results Oral teriflunomide (SanofiAventis) reduced the average number of MS relapses in a year significantly more than inactive placebo is a study of 796 people with relapsing forms of MS. The therapy also reduced the volume of tissue damage and active areas of damage in those who were taking teriflunomide compared to placebo at the end of the two-year trial.
MS brains lack neurosteroids New research finds that the brains of people living with MS lack a group of chemicals called neurosteroids which help brain cells repair themselves and do other important things. The researchers on this study hope their discovery will open the door to new treatments for the disease.
To the Editor: Ocrelizumab found to reduce disease activity in Phase II trial A recent Phase II study of ocrelizumab (Genentech), given intravenously, found the antibody significantly reduced disease activity as measured by MRI scans in a study of 218 people with relapsing-remitting MS.
Starving inflammatory immune cells slows damage caused by MS A pair of researchers at the University of California, San Diego Skaggs School of Pharmacy and Pharmaceutical Sciences report that inhibiting the ability of immune cells to use fatty acids as fuel measurably slows disease progression in a mouse model of MS.
Glucosamine-like supplement may suppress MS attacks A new study at UC Irvine has found that a glucosamine-like dietary supplement can inhibit the growth and function of abnormal T-cells that in MS incorrectly direct the immune system to attack and break down myelin.
I was stunned to read my husband’s article in your latest issue of MSConnection. I didn’t realize how proud he and our family were of my determination to dance with my son at his wedding. But I would be remiss not to mention all the help and encouragement I received from Jackie, Lesley and the entire staff at Moss Rehab-Elkins Park; and Lynn, from the Ambler YMCA. Brian and I will always be grateful to them for our success. ~ Sally Spiwak
Researchers find pathway to potentially block disease-inducing inflammation Researchers have discovered a cellular pathway that promotes inflammation in diseases like multiple sclerosis. Understanding the details of this pathway may provide opportunities for tailored treatments of inflammatory and autoimmune diseases.
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Together we are making an impact The end of the year is generally when we talk about the bottom line... how much money we raised last year for services and research, and how we Tami Caesar, are working to address the President ever-changing needs of the people affected by MS in every part of our chapter area. Given the ongoing issues with the national and global economy, it should come as no surprise that fiscal year 2011 was “challenging.” However, I want to let you know that we had some victories this past year. As many of you know, we held our first ever obstacle/ running event in 2010. For a first-year event, it did well, attracting some 900 runners and raising $182,000. But in 2011, 4,000 people showed up who helped us raise almost $800,000. Now who would have thought you could raise nearly a million dollars by letting people play in the mud? We need events like this – now known as “MuckRuckus MS” -- to be successful because through this success we can make a measurable difference in the lives of the thousands of local people living with MS. I am pleased to report that, with your help, we have been able to have a significant impact in 2011. As a chapter, we committed more than a half million dollars to direct client services, like emergency financial assistance and home modification grants.
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We also saw significant increases in the number of requests we received this past year – such as: • A 10% increase in the number of people accessing our employment counseling services • A 25% increase in rehabilitation services • An 83% increase in counseling services and • 87% increase in food card assistance We are doing all that we can to meet the increased demand, because we know how vitally important it is to provide the help that people living with MS need – when they need it. And finally, I should mention research. Nationally, the Society has invested more than $35 million dollars in MS research aimed at stopping the progression of MS, restoring what’s been lost to the disease and ending MS forever. Locally, the chapter invested nearly $3 million dollars this year and we are halfway to our goal of raising an additional $800,000 for our vitamin D research campaign. We, as a united community, are making progress. We’ve come this far because of the teamwork between volunteers, staff, board members, event participants and, most important, people living with MS and their families. Just think how much further we could get if every person impacted by this disease, every loved one, every friend, got involved in the cause. And with that thought, I wish you a happy and healthy new year. Warmest regards,
Tami Caesar, President
The following new members have been elected to a three-year term on the Greater Delaware Valley Chapter’s board of trustees: Jerry Block Vice President, BNY Mellon Wealth Management Services Block joined BNY Mellon in 2008 after 25 years of business leadership. Prior to his new role, Block led sales organizations with revenues up to $500 million, managed staffs in excess of 100 people and was a company officer. He is a top Bike MS fundraiser, a member of the Chapter’s 2009 Leadership Class and Governance Committee. Patrick J. Dugan, CPA Director, Asher & Company Ltd. Dugan is a director of the Accounting and Auditing Department at Asher and Company and co-chairs its Commercial Real Estate Group. He provides accounting, auditing and consulting services to clients primarily in the real estate, manufacturing and distribution industries. Dugan has participated in Challenge Walk MS, Walk MS, Leadership Class and he serves on the Chapter’s Finance Committee.
David E. Jones, MD Dr. Jones led the MS Center at Lehigh Valley from 20082011. Prior to that, he was an MS Society Clinical Fellow at the University of Mass. Memorial Health Care. Dr. Jones was instrumental in creating the MS Center “without walls” in partnership with Good Shepherd Rehabilitation in Allentown, Pa. He was a member of the Chapter’s Lehigh Valley Leadership Class, he serves on the chapter’s Clinical Advisory Committee and frequently does presentations about MS to patients, physicians and allied health care professionals.
CHAPTER WELCOMES NEW TRUSTEES
Mike Spaeder Owner, Mike Spaeder Landscaping Over the past two decades, Spaeder has built one of the region’s top commercial landscape construction companies. Spaeder Landscaping now works throughout Pennsylvania, Delaware, New Jersey and New York. Spaeder’s family participates in Walk MS every year. He has also participated in the MS Leadership Class setting an all-time record by raising $50,000 in 2009. He is chair of the MuckRuckus Committee and has been instrumental in the development and success of the event.
In addition, the following trustees were re-elected to another three-year term: Valli Baldassano, Nate Cohen, Ian Harris, Paul D. Kinmartin, Bradley Korman, Linda G. Kraemer, Brad Krouse, William Monahan, Molly D. Shepard and Renaat Van den Hooff.
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Continued From PAGE 1 Members of the review committee include Greater Delaware Valley Chapter President Tami Caesar and Vice President of Client and Community Services Karen Mariner, along with board of trustee members Valli Baldassano, Michael Bogdonoff, Laura Grossi-Tyson and Linda Kraemer, a research advocate who was instrumental in revising the application process.
Making a true impact in the community “The whole purpose of the community impact grants is just that, to make a true impact in the communities we serve,” says Mariner. “We want to improve the quality of life for people living with MS regardless of their financial situation.” So far, the Society has awarded nearly $250,000 in community impact grants across the Greater Delaware Valley. In the Philadelphia area, the chapter provided $50,000 to Thomas Jefferson University to support a social work position. In the Lehigh Valley, a two-year $98,000 grant was awarded to Lehigh Valley Hospital to provide social work support for our clients. Additionally, Good Shepherd Rehabilitation received a one-year grant for $45,000 to provide wellness programs and St. Luke’s received a $44,000 one-year grant to provide MS social work support, a position that is generally not funded by the hospitals. “Social work positions specifically for MS patients usually go unfunded,” says Mariner. “The grants we were able to provide Jefferson, Lehigh Valley Hospital and St. Luke’s made it possible for the hospitals to fund these critical positions which are so important to our clients. More than 7,000 families are now benefiting from this program.”
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COMMU NIT Y
New community grant awarded Recently, the Chapter awarded a new community impact grant for increased access to MS care to Total Rehab & Karen Mariner and Tami Fitness (TRF) in Caesar of the National MS Cherry Hill, N.J. Society present a check to This initiative will enable the Society John Marmarou of Total Rehab & Fitness to increase access to MS care and reach out to underserved communities in the South Jersey area who need rehab services. This grant will make it possible for TRF to increase access to MS patients, including those in underserved communities, by providing rehabilitative services, regardless of patients’ ability to pay, in an effort to improve the quality of their lives. “We’re unique because, unlike traditional therapy programs, there is no defined discharge date,” said John Marmarou, DPT, director of therapy services at TRF. “Patients come to the facility and work with the staff through the critical stage of their illness. Once their functional capacity has plateaued, we offer a maintenance program to help them continue their progress and ensure they do not regress.” TRF is a free-standing interdisciplinary practice that provides medically-based rehabilitation
“TRF’s focus is parallel to the strategic direction of the National MS Society,” said Mariner. “The organization’s interdisciplinary approach to therapy was developed to help halt disease progression and restore function now. All our efforts are focused on enhancing care for people with MS and improving the quality of life for those affected by the disease.” Renee Kleek-Laureyns of Palmyra, N.J. has been attending TRF since January 2011. “Falling on a weekly basis used to be the norm for me. The combination of physical, occupational and behavioral therapies have made significant improvements to my well-being,” she says. Since beginning therapy, Kleek-Laureyns reports having had just one fall. “I have learned to value my health and abilities.” To evaluate the program’s success, TRF will initiate three validated patient tests and conduct an evaluation in regard to falls, hospitalizations and exacerbations by comparing each patient’s condition for the period of one year prior to treatment with the patient’s condition at the conclusion of the first year of treatment to further assess improvement. This is the first time a community impact grant has been awarded to a free-standing facility. “This is a new model for us,” says Mariner. “The potential benefit of TRF’s success could have significant implications in health-care benefits.” Because insurance companies don’t normally pay for maintenance therapy, TRF’s proposed model will afford people that have tapped out their insurance benefits the opportunity to
continue their program under the guidance of a licensed therapist. If the results are positive, the Society could then present these findings to insurance companies in an effort to advocate for more health-care benefits.
services and exercise programs to improve the quality of life for patients with chronic disease.
“Falling on a weekly basis used to be the norm for me... [the] therapies have made significant improvements to my well-being. I have learned to value my health and abilities.” Our commitment to improve quality of life These community impact grants are just one more way for the Society to better serve our clients. We are committed to improving the quality of life of people living with MS and their families. “We depend on fundraising dollars to keep this program going,” says Mariner. “Thanks to mass market events like Walk MS and Bike MS and the generosity of individual donors, we’re able to fund programs that make a difference in the community.” Grant applications for the coming year will be available in early March. For more information on the Society’s community impact grants, please contact Karen Mariner at firstname.lastname@example.org or call 215-271-1500. TOLL FREE NUMBER 1 800 548 4611
Preparing for pregnancy
he good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm. Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS, says Barbara Green, MD, director of the West County MS Center, St. Louis. “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.”
Meds, pregnancy and MS None of the disease-modifying drugs (DMDs) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan a discussion with your neurologist about when to stop DMDs—and when, after delivery, to begin them again. “Until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” says Dr. Green. “But a new study quotes a beneficial effect on relapse. People with non-aggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.” Include any symptom-management medications in the discussion with your doctor. From 8
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Julie Hammond, diagnosed with MS in 2002, with son Travis. Courtesy of Greater New England Chapter.
bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says Dr. Green. “Symptoms during pregnancy are probably not MS—tiredness doesn’t mean your symptoms are coming back,” says Eileen Davis, APN, who has worked with people with MS for 12 years in New Jersey and New York. Keep exercising, she recommends, “so you aren’t carrying unnecessary weight post-pregnancy, which can affect symptoms such as falling.”
Connect the team Connect your obstetrician and neurologist to coordinate your care. Visit nationalMSsociety. org/pregnancy for “Pregnancy, Delivery and the Post-Partum Period” to share with health-care professionals. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS. Don’t wait to plan for what happens after delivery. Tap family and friends about helping with housework, food and watching the baby!
Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call 1-800-FIGHT-MS for free print copies. • nationalMSsociety.org/pregnancy • “MS and Starting a Family” Momentum, Winter 2010-2011 nationalMSsociety.org/Momentum (click “Back Issues”). • Kara’s Story – Part I http://youtu.be/F1-heWHC7jI The National MS Society follows Kara from her first trimester… • Kara’s Story – Part II http://youtu.be/npgN99NeD1k …all the way through to the birth of her baby boy.
Resources on MS and pregnancy
ANNUAL MEETING AND MS RESEARCH UPDATE Three expert panelists came together with 300 chapter members, staff and board members on Thursday, November 17 to speak about the most current MS research to STOP MS in its tracks, REPAIR what’s been lost and END MS forever. Ellen Mowry, MD, MCR, Associate Professor of Neurology, Johns Hopkins University, spoke about the role of vitamin D in reducing MS attacks. Judith Grinspan, PhD, Research Associate Professor of Neurology, Children’s Hospital of Philadelphia, spoke about myelin repair, and Simon G Gregory, PHD, Associate Professor of Medical Genetics, Duke University, spoke about the role of genetics in MS. If you missed it, you may view their presentations at MSconference.com.
• The MS Daily Minute nationalMSsociety.org/dailyminute Sixty-second videos packed with information on • Beginning MS Therapy after Pregnancy • Relapses During Pregnancy • Breastfeeding with MS • Support During and After the Pregnancy
Simon G. Gregory, PhD, Judith Grinspan, PhD and Ellen Mowry, MD, MCR answering questions at the Annual Meeting and MS Research Update TOLL FREE NUMBER 1 800 548 4611
Flu shot, or not?
In 2012, the “donut hole,” or gap in prescription drug coverage, still exists, but the Affordable Care Act requires insurers to give Medicare Part D participants a 50% discount on most brand-name drugs, including the MS disease-modifiers, while they are in the coverage gap. Drugs prescribed “off label” for MS symptoms are still excluded from coverage and exempt from the discount.
Flu season brings not just coughs and sniffles, but the question: Get a flu shot, or not?
Visit medicare.gov for general information, publications and to compare the drug plans available in your area. Call an MS Navigator® at 1-800-344-4867 for free health-insurance counseling.
Because there is a much higher risk of an MS relapse due to flu than to the flu vaccine, the Society generally recommends that people with MS get the shot. “Don’t wait for flu season to catch up with you. Discuss getting the flu shot with your doctor to protect yourself this year,” says Rosalind Kalb, PhD, vice president of the Society’s Professional Resource Center.
People with a Medicare private health plan, also known as a Medicare Advantage plan, (but not including a Medicare Medical Savings Account plan), can switch to Original Medicare during the Medicare Advantage Disenrollment Period from January 1, 2012, to February 14, 2012.
The “Extra Help” program People who receive SSI (Supplemental Security Income) benefits, or who get help from the state Medicaid program to pay Part B premiums (Medicare Savings Plan), automatically qualify for “Extra Help,” which means no donut hole for prescription drugs as well as lower coinsurance and copayment costs. People with low incomes also qualify. Apply directly through the Social Security Administration at socialsecurity.gov/i1020.
The injectable flu vaccine—which is an “inactivated” vaccine—has been studied extensively in people with MS and is considered quite safe. It may be taken by people on an interferon medication, glatiramer acetate, or mitoxantrone. It is not yet clear if the vaccine is as effective for those talking natalizumab or fingolimod. It’s best to delay vaccination for four to six weeks after the onset of any serious
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exacerbations. People with MS should avoid FluMist, a live-virus flu vaccine (sometimes called LAIV for “live attenuated influenza vaccine”) delivered via nasal spray. For more information, go to nationalMSsociety.org/ vaccinations.
Tax deductions beyond medicine Many of the expenses associated with managing MS might be tax deductible, beyond medicines. (Keep in mind that only unreimbursed medical expenses that exceed 7.5% of your adjusted gross income are deductible.) Here are additional possibilities: • Equipment and extras, such as service dogs (and dog food!) and transportation to doctor appointments via car service or taxi if you can no longer drive. • Home modifications that don’t increase a home’s value. “Get a doctor’s prescription for ramps, wider doorways, grab bars, even a swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable,” suggests Anne Davis, program director of Legal Services for the Society’s New York City and Southern New York Chapter. For people receiving SSI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits.
Two IRS Publications—907, Tax Highlights for Persons with Disabilities (irs.gov/pub/irs-pdf/p907.pdf) and 502, Medical and Dental Expenses (irs.gov/pub/irs-pdf/p502.pdf)—may be helpful. Consult an accountant to make sure your particular situation is in line with current IRS regulations.
Scholarship Opportunity High school seniors who have been diagnosed with MS or who have a parent with MS are eligible for the Society’s scholarship program. Awards range from $1,000-$3,000; a small number of fouryear awards are offered. Applications for 2012 scholarships will be accepted (online only) until January 13, 2012. For more info, visit nationalMSsociety.org/scholarship or call us at 1-800-FIGHT-MS.
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52 MS genes identified
what causes MS and improve treatments. The Society is funding a second large study to confirm and expand these results.
New MS therapy moves forward
In the largest MS genetics study ever, researchers have documented 29 new genetic variants associated with MS, and confirmed 23 others previously implicated in the disease. Most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. A large number were related to T-cell function; T cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in MS. Also, two genes linked to vitamin D were found: research increasingly suggests that low vitamin D levels are a risk factor for developing MS. (The Society is funding a new clinical trial of vitamin D supplementation.) The study, a collaboration between the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2, was published in the August 11, 2011, issue of Nature, and involved nearly 10,000 people with MS and more than 17,000 who do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover 12 JOIN THE MOVEMENT: nationalMSsociety.org/pae
The first phase III study of alemtuzumab (proposed brand name Lemtrada) for relapsing-remitting MS found that the drug met one of two primary endpoints. Researchers found that people treated with the drug had 55% fewer relapses over two years compared to those taking the interferon Rebif. However, results of the trial’s other goal, to delay disability, were not statistically better than Rebif. The study, called CAREMS I, involved 581 people with relapsingremitting MS. Another trial, called CARE-MS II, is still underway. Alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the FDA to treat B-cell chronic lymphocytic leukemia. Sanofi and Genzyme, the drug’s sponsor, plan to seek approval of this intravenous drug for MS in the U.S. in early 2012. In June 2010, the FDA designated alemtuzumab a “Fast Track Product,” which should expedite its future review after results of the phase III trials are submitted.
Bone health may begin early People with MS have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before MS has been diagnosed.
Previously, scientists had speculated that people with MS are at greater risk of low bone density and broken bones due to factors such as lack of exercise stemming from mobility issues, medications or low levels of vitamin D (which plays a significant role in building bone). The researchers suggested that even early in MS, people should pay attention to good bone health by getting adequate vitamin D and calcium, as well as by performing weightbearing activities. For more ideas on promoting bone health, go to nationalMSsociety.org and search for “You Can Build Healthier Bones.”
MS research TAKES center stage
According to the study, low bone mass is more widespread among people newly diagnosed with MS, or those with clinically isolated syndrome (or CIS, a single episode of MS-like symptoms), than among people without MS. Study researchers measured bone density in 99 people newly diagnosed with MS or CIS, compared to 159 people without MS. More than half of the people with MS or CIS had low bone mass, compared to 37% of controls.
In October, About.com blogger Dr. Julie Stachowiak and producer/director Kate Milliken—both of whom live with MS— reported live from the world’s largest MS conference at the Society’s blog. At the fifth joint meeting of ECTRIMS and ACTRIMS (the European and Americas Committees for Treatment and Research in MS), over 5,000 of the world’s leading scientists and clinicians gathered October 1922 in Amsterdam. Results from four phase III studies on MS therapies were presented, along with the latest research on MS risk factors, treatments and diagnosis. Join the conversation at blog.nationalMSsociety.org The funding of the research presented in these pages is made possible by people like you. To make a donation, please visit nationalMSsociety.org/pae and click on “Donate.”
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MEET YOUR LEGISLATOR U.S. Congresswoman Allyson Y. Schwartz Pennsylvania District 13 U.S. Representative Allyson Y. Schwartz is currently serving her fourth term representing Pennsylvania’s 13th Congressional District. The 13th District includes both the close-knit neighborhoods of Northeast Philadelphia and the first ring suburbs of Montgomery County. What are your legislative interests and top priorities? My father was a Korean War veteran and my mother was a Holocaust survivor. Because of what their experiences taught me, I’ve focused much of my public service work on standing up for America’s families by fighting for policies that build democracy, security and opportunity for all Americans. Right now, my top priority is ensuring that we strengthen and rebuild our economy through smart, innovative public-private solutions. As a Pennsylvania State Senator, I worked to create the Children’s Health Insurance Program (CHIP), which later served as the model for a national initiative which now provides health insurance to millions of children. In Congress, I successfully led efforts that resulted in banning the ability of insurance companies to discriminate against children with pre-existing conditions and created rules requiring simpler and clearer insurance paperwork to
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help protect consumers. Eliminating the copayment that seniors pay for preventative care under Medicare and a new effort in which prescriptions will now be sent electronically, saving billions in health-care dollars and providing safer, higher quality care to patients are two of my other major successes in Congress. What do you think government can or should do to provide people with disabilities with the care they need? We have a responsibility to ensure that all Americans have access to quality and affordable healthcare, and this is especially needed concerning Americans with disabilities. I’ve been outspoken about the urgent need for greater investment in medical research because I believe we must harness the power of America’s world class scientific community and innovative spirit in order to promote our nation’s health and find a cure for debilitating diseases, such as MS. I have supported investment in the Department of Defense’s Congressionally Directed Medical Research Program’s MS initiatives as well as the National Institutes of Health. I will continue to advocate for steady investment in medical research and vital health-care services so we can bring hope and relief to those that are suffering from MS as quickly as possible.
Why is it important for people to get involved in advocacy?
Do you have a connection to multiple sclerosis?
I believe what government does or doesn’t do matters tremendously in all of our lives—in health care, in environmental protection, in national security and in economic opportunity. I also believe it matters who you elect to represent you in government, and, because of that, is incredibility important for all citizens to be engaged, to understand the issues and to have your voices heard. America is faced with deep challenges, but these challenges present each of us with the opportunity to make our country and our communities stronger—to build on our strengths, contribute to our communities and improve our quality of life. I’d encourage each one of you raise your voices and make a difference – whether it’s through public service, community activism or volunteering on an issue important to you
families and friends. I know this personally. My sister Nancy has MS. I’ve participated in Walk MS on her behalf, and seeing how she’s been affected has deepened my belief in the importance of medical research. As those living with MS struggle to cope with overwhelming emotional, physical and financial burdens, we must continue our search for new treatments and a cure. What’s the best way for constituents to work with you? It’s an honor to represent the people of the 13th Congressional District of Pennsylvania, and I always appreciate hearing from my constituents. I have two district offices, one in the Mayfair neighborhood of Northeast Philadelphia and a second in Jenkintown, and people are always welcome to stop by. I’d also encourage people to visit my website at house. gov/Schwartz and learn more about my work in Congress and to stay engaged with me.
Multiple Sclerosis is a devastating and chronic disease – one that affects so many of our
Become an MS Activist Want to learn about the latest advocacy issues impacting your state? Join us on Facebook and follow us on Twitter! Join the New Jersey and Pennsylvania Collaborative Action Networks to do something about MS now. Working with legislators on both sides of the political aisle, the networks raise awareness and advocate for policies and programs that will benefit people with MS. We are strengthened by the work of our MS activists: individuals with MS, their friends and family,
professionals and others who raise their voices and communicate the needs of people with MS to their elected officials. IN NEW JERSEY: facebook.com/pages/National-MSSociety-NJ-Collaborative-ActionNetwork/103897046389848 twitter.com/NMSSNJCAN IN PENNSYLVANIA: facebook.com/pages/National-MSSociety-PA-Collaborative-ActionNetwork/250617373369# twitter.com/MSCANPA TOLL FREE NUMBER 1 800 548 4611 15
Join us in Washington, D.C. for the 2012 Public Policy Conference 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. “The Public Policy Conference granted my wish to gain first-hand information and a greater understanding of public policy to further MS outreach, creating partnerships with our local leaders and businesses, and increase public knowledge,” said 2011 Public Policy Conference attendee Pamela Trosino of New Jersey. The 2012 Public Policy Conference, slated for March 5-7 at our nation’s capital, promises to be an exciting, energizing and engaging three days, and you’re invited to join us! We’re seeking four people living with MS or family members of people with MS -- two from Pennsylvania and two from New Jersey -- to represent our chapter in Washington, D.C. this year. We will pay 100% of the cost of the trip. Previous advocacy experience isn’t
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required; all that’s necessary is a willingness to tell your story and a desire to make a difference for people living with MS. We’ll be selecting this year’s participants through an essay contest. Visit nationalMSsociety.org/pae to fill out the online application. A committee of volunteer activists, board members and staff will be reviewing the essays. The deadline to apply is January 21. While we only have the budget for four volunteers to attend, we would love to have more. If you’d like to be part of the Public Policy Conference or you have questions, please contact Karen Mariner at email@example.com or 1-800-548-4611.
tips for managing day-to-day life
The unpredictability of MS can make living day-to-day extremely challenging. Plans may have to change at a moment’s notice if an exacerbation occurs. It’s especially important at this time of year when everyone has even more to do. So we’ve put together these simple things you can do to keep your daily life moving as seamlessly as possible. 1. Always have a backup plan. Flare-
ups can happen at any time, so you should always have a family member or friend who you can count on to drive your kids where they need to go, a frozen meal that heats up quickly in the microwave or oven, etc.
2. Don’t overdo it. People who live with
MS sometimes try to be Super Man or Wonder Woman when they have a good day because the opportunity might not be there the next day. But that can backfire. It’s like moving one step forward and two steps back. Getting your rest is extremely important so that you’re not exhausted the next few days.
3. Keep moving. Exercise has been shown to ease symptoms of MS in many studies. Whether you’re in a chair or ambulatory, exercise is extremely important, so make time for it and leave the excuses. Again, be mindful to not overdo it.
4. Modify your home. We’re not talking
about major improvements. Make your tasks as easy as possible on yourself by making sure you have plenty of room to move through your home without barriers or tripping hazards, keeping items you use often within easy reach and creating a calm personal work space to reduce stress.
5. Ask for help. Having people around
who can help you with your daily tasks and offer a positive outlook is one of the best ways to reduce stress, which is key for people living with MS. Don’t wait until you’ve exhausted yourself to ask for help. And don’t wait for someone to offer it to you, as that may never happen.
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Another great year for Bike MS: City to Shore Ride Seven thousand cyclists participated in this year’s Bike MS: City to Shore Ride and raised more than $5 million to support research, programs and services for people with multiple sclerosis in the Greater Delaware Valley region. The ride, which took place on September 24 and 25, has become one of the foremost cycling events on the East Coast. The vital funds raised by the ride are more important than ever, as 13,000 local people living with MS are turning to the National MS Society for help in record numbers. City to Shore attracts corporate teams, families and friends of people with MS and individuals to join the movement to create
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a world free of MS. Each cyclist must collect at least $300 in pledges to participate in the ride, with many raising hundreds or thousands of dollars more. In return, cyclists receive amenities such as bike mechanics, emergency transportation, catered rest stops every 15 miles, luggage delivery and much more. Cyclists were able to choose from five different routes, from a one-day, 25-mile ride to a two-day, 175-mile ride. Named by Bicycling Magazine as the “Best Cycling Getaway in NJ,” riders enjoy the flat terrain of Southern New Jersey as they travel through the blueberry fields of Hammonton, the Pine Barrens and into the sweet smells of salt water taffy and ocean air in historic Ocean City.
Challenge Walk MS unites families and friends It was an early Saturday morning. The air was crisp and the excitement was palpable. More than 200 walkers and 100 volunteers took up the challenge to walk 30 miles on October 22-23 to fight multiple sclerosis. They walked, they laughed, they hugged, they cried -- what a beautiful weekend we experienced together. Set in beautiful Brandywine Valley, walkers bonded and made life-long friendships as they took on Challenge Walk MS 2011. During Challenge Walk weekend, the Society presented Enough is Enough: An MS Research Update. The education program featured Judith Grinspan, PhD, Research Associate Professor, Department of Neurology, Children’s Hospital of Philadelphia, who captivated the audience with a glimpse into her lab where she and her team are working on a myelin-repair study. Next year marks a special milestone in Challenge Walk MS history as we celebrate the 10th anniversary of this two-day event. Special surprises await as the event returns to its original landscape, Camp Green Lane in Lansdale, Pa. Save the date for another weekend full of adventures October 1314, 2012. If you’ve never experienced Camp Green Lane, don’t let the notion of “camp” scare you because you have the option to stay at a nearby hotel and still experience Challenge Walk MS and all that we have in store for you. Transportation to and from the hotel will be provided. Register now for only $35. Hurry – this discounted rate expires February 10. Visit challengephilly.org for more information and to register.
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I RUN TO STOP MS I Run to Stop MS offers runners, marathoners and distance athletes of all types the chance to create a world free of MS while pushing their own personal limits. Although a personal connection to MS isn’t required, many runners have close ties to the disease. The campaign is organized by Paul Goldstone, a community leader and avid runner/Ironman competitor whose father has been living with MS for more than 20 years. Some runners on the team even have MS themselves, inspiring their teammates through their fortitude, positive spirit and dedication to our shared mission. “The 2011 drive of the MS KarmaStriders continues to show the strength and worth of this unique team, probably due to its strong organic roots,” said Goldstone, team captain of the MS KarmaStriders. “We continue to have a strong number of runners from year to year.” In 2011, the MS KarmaStriders had approximately 30 team members and raised nearly $30,000. “Our feature race each year, the Philadelphia Marathon, is very late in the calendar year, after most people’s yearly allotment for charitable contributions have already been given,” said Goldstone of some of the obstacles his team has been able to overcome.
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“We are the first team of its kind to operate globally. We have had runners from around the world -- Puerto Rico, Germany, all across the U.S. We encourage all types and levels of endurance athletes to participate.” The KarmaStriders took part in numerous events this year including marathons, triathlons, century rides and countless 5Ks and 10Ks. Some notable events include the Philadelphia and San Diego marathons, the Ironman Lake Placid, Ironman Florida and the Vermont Ultra Marathon. “We continue to experience a worldwide draw thanks to both the Internet and our broad attraction to endurance folk of all skill levels and endurance disciplines. From Boston marathon qualifiers to first-time 5K runners, we welcome everyone.” For more information about I Run to Stop MS, visit nationalMSsociety.org/pae or call 1-800-548-4611.
Join 15,000 area residents who care about people affected by MS by participating, volunteering or recruiting walkers in 2012.
Moorestown High School Moorestown, N.J.
Philadelphia Museum of Art Philadelphia, Pa. (5k & 10k run)
This year we will hold 18 events over three days. Find the date of your favorite walk listed to the right.
Washington Lake Park Washington Twp., N.J.
Don’t just walk, run!
Ridley Creek State Park Media, Pa. (5k run)
If you’re looking for a bigger challenge than a stroll through the park, consider running a 5K or 10K for MS. In addition to the various walk lengths offered, the following sites also offer runs: • Philadelphia Art Museum – 5K or 10K run • East Goshen Township Park – 5K run • Ridley Creek State Park – 5K run Visit walk4MS.org or call 1-800-883-WALK to register today.
Tyler State Park Newtown, Pa. Elmwood Park Zoo Norristown, Pa. Main Line Radnor, Pa. Gring’s Mill Recreation Area Reading, Pa. Lenape Park Sellersville, Pa.
Registration is now open for Walk MS 2012
05.06.12 Medford Lakes Medford Lakes, N.J. Ocean City Boardwalk Ocean City, N.J. Parvin State Park Vineland, N.J. Eastern High School Voorhees, N.J. Coca-Cola Park (Home of the Iron Pigs) Allentown, Pa. North Penn High School Lansdale, Pa.
East Goshen Pocono Raceway Township Park Long Pond, Pa. West Chester, Pa. (5k run) Valley Forge Area Valley Forge, Pa.
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Eight-year-old hosts bake sale fundraiser to benefit the Society
n Saturday, September 3, the Watson family of Downingtown, Pa. hosted a small bake sale to raise money to support the fight against MS. Brian Watson was diagnosed with relapsing-remitting MS in the summer of 2008 and since then the family has engaged in a number of MS-related fundraisers for the Greater Delaware Valley Chapter, such as the annual Walk MS events, Challenge Walk and Mud Run MS Philly. What makes this bake sale fundraiser unique, however, is that it was Brian’s daughter’s idea and initiative to set it up. Sophia Watson is eight years old and already quite the philanthropist. She was reading about bake sales in a cookbook for kids that she received as a gift last year and came up with the idea of hosting a bake sale to raise money for the National MS Society.
daughter throughout the planning process, it was Sophia who drove the idea and wanted to make it happen. The young entrepreneur raised more than $400 from the bake sale and donated the funds to the chapter’s Challenge Walk MS event. She plans to continue her fundraising by putting together a larger bake sale and making it an annual event. Sophia also wants to continue to support the Society by participating in both Walk MS and Challenge Walk.
Sophia asked a number of people to bake things and consulted with her parents on the price for each item. She also enlisted the help of some of her neighborhood friends to help make signs and run the event. Sophia and her friends walked the neighborhood and handed out notes to people who were outside and then hung up signs on street corners to generate some promotion. While Sophia’s mom, Heidi was available to guide her From left, Brian, Heidi, Sophie and Charlie Watson 22 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Community fundraising all-stars EVENTS
Many thanks to all of our volunteer fundraisers who are helping create a world free of MS. Board member Valli Baldassano hosted The Art of Giving at Neiman Marcus King of Prussia on Tuesday, October 18. The event featured a champagne reception and fashion presentation by designer David Meister. More than 25 people attended the event, which raised $1,000 for the chapter. Fashion models accompany Valli Baldassano, center, and designer David Meister at the Neiman Marcus event.
This fall, members of the Pfizer staff held a car wash to raise funds for their Bike MS: City to Shore team. The car wash raised $1,358 for the Pfizer team, which consisted of 108 cyclists. The Pfizer team raised almost $50,000 this year. Jeff M. Hamilton, Senior Vice President Enterprise Resource Planning at Pfizer presents Society Vice President of Development Megan DiPanni, with a check for $1,358.
Button Hook/Zipper Pull
The Button Hook/Zipper Pull is a dressing aid designed for use by individuals with fine motor or grasping difficulties or arthritis. This small device assists in button and zipper fastening. It incorporates a stainless steel hook at one end and a â€œCâ€? hook at the other. Various models are available, ranging in price from $5 to $15, and are available at pharmacies and major retailers nationwide. TOLL FREE NUMBER 1 800 548 4611 23
Self-help groups offer many benefits
he Greater Delaware Valley Chapter is proud to offer more than 25 volunteerled self-help groups across the region.
Sue Salomon, who was diagnosed in 1989, has been attending the Let’s Talk MS group in Malvern, Pa. for more than five years. “I’m a believer in self-help groups,” she said. While she didn’t have any pressing problem or issue urging her to start attending a self-help group, she thought, “Let me go and see and connect with some people I could talk to.” “Since I’ve started, I’ve learned so much about MS,” she said. “I enjoy being part of the group. We have fun. We laugh. It’s a whole experience.” She said the location was convenient and she found that there were a lot of people she could relate to. Plus, she has nothing but kind words for the group leader, Janice Park.
“I think Janice is a great leader,” she I enjoy being part said. She added that of the group. We Janice has gotten some great speakers have fun. We to talk to the group, she’s great at steering laugh. It’s a whole the conversations and experience. is always up on the most current research. “She’s a fountain of information, and she makes it so accessible for everyone. You always learn something. And she’s always a good ear.” To anyone who’s on the fence about joining a self-help group, Sue says try it. “Go and see and listen. Nobody’s going to make you participate if you don’t want to. Come and see what you think. There’s never an obligation to attend another meeting. It doesn’t hurt to try.” Self-help groups are currently meeting throughout the Greater Delaware Valley area including Berks, Bucks, Carbon, Chester, Delaware, Lehigh, Monroe, Montgomery, Northampton, Philadelphia and Schuylkill counties in Pennsylvania, and Atlantic, Burlington, Camden and Gloucester counties in New Jersey. If you are interested in being a self-help group leader or starting a new selfhelp group in your area, call the chapter at 1-800-548-4611. To find a self-help group meeting in your area, visit nationalMSsociety.org/pae or call 1-800-FIGHT-MS.
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New MS diagnosis and management app RESOURCES
The Society’s Professional Resource Center partners with health care professionals to enhance quality of care and increase access to care for people living with MS. We are pleased to announce a new tool and resource that will help our clients by assisting their health care providers with important information on the diagnosis and management of MS. The “MS Diagnosis and Management Healthcare Professional Pocketcard Set and App” is a concise collection of important and easy-to reference information on the diagnosis and management of MS and is available as a FREE downloadable Apple and Droid “App” and/or printed plastic pocketcard set. The link to download the free app can be found at nationalmssociety.org/prc. Highlights of this resource include: • Signs and symptoms characteristic of MS • The four MS disease courses • 2010 Revised McDonald Diagnostic Criteria for MS • Differential diagnoses
• Elements of the diagnostic workup, including typical findings on brain and spinal MRI, and cerebrospinal fluid analysis
• Treatment strategies including disease-modifying medications and relapse and symptom management • And much more.
• Common clinically-isolated syndrome presentations
Employment teleconference series The Greater Delaware Valley Chapter is pleased to offer a new employment teleconference series. The series is made up of six employment-related programs held every other Thursday. Participate in several calls or just the one that interests you. They are free and you will need to register individually for each call you wish to attend.
A 21st Century Approach to Job Searching: Webinar
Get Informed: Legal Protections in the Workplace
Managing Challenging Resumes
Home-Based Employment: What Employers Want
Don’t Do It Alone: Employment Resources
Register online or by calling 1-800-FIGHT-MS (select option 1). TOLL FREE NUMBER 1 800 548 4611 25
FACE OF MS
Face of MS: Bill Trach William Arthur Trach, 67, of Allentown, Pa., is a Penn State alum and a member of the PSU Alumni Blue Band. Recently, he marched and played the trombone along with 350 other band members at the PSUPurdue football game. He has done this for more than Bill Trach
30 years; the last 18 years while living with MS.
I have had MS for the past 18 years. I am very unusual since I have only had one major MS event and two minor aftershocks. I consider this is a â€˜benignâ€™ form of MS. I still work as a Registered Professional Architectural Engineer as I have for the past 40 years. I take no MS medications. I am almost normal, but time moves on and there is no way to stop that. I plan to continue to do the work I am skilled at, and MS will not stop that task. I can march better than walk. This year I marched and played my trombone with the 2011 version of the Penn State Alumni Blue Band at the homecoming game on October 15. There were more than 100,000 fans in Beaver Stadium that afternoon. My MS history began at age 49 when I experienced a burning sensation in my legs. This was followed by some numb feelings 26 JOIN THE MOVEMENT: nationalMSsociety.org/pae
in my face, a loss of balance or stability and difficulty running and eventually walking. The first major occurrence or exacerbation occurred while on vacation in Bermuda the summer of 1993. I returned from Bermuda and went right to the hospital. I was experiencing double vision and could not see the color red. After a five-day treatment with a chemo-type anti-inflammatory drug, I began to recover. I set some goals for myself saying I was going to be able to run again. I had been running two to three times each week and my time was a mile in about eight and a half minutes. Once I was home, I worked out with free weights and began running again and within one year I was again able to run a 5K in about 45 minutes. I never stopped working, as I was partner in an engineering firm. I was editing specifications
I have had two other very minor exacerbations -one in October of 1994, seven days before the PSU homecoming football game. After a three day treatment, I went to the game and marched and played my trombone with the Alumni Blue Band. It was tiring but I did it. The third attack was in 1996 after my son’s university graduation where I just was worn out.
All has been fine since that time with some slow changes in physical abilities, but I have trouble determining if it is from MS or from aging. At 67, I can still function and do many physical things. With all of the hidden and unknown symptoms of MS, it is hard to know what is and what is not due to MS. All that being said, I plan to just keep going and do the best I can with my many life tasks. That includes eighthour workdays, a summer vegetable garden, home canned and frozen foods, small wine making when the grapes are good, normal home repairs, painting and vacation times.
FACE OF MS
on a laptop computer while I was in the hospital, and I had several meetings with my design staff with the bed as a worktable covered by working drawings. Before I was discharged from the hospital I began some PT and I have tried to continue the process, although I do not do the exercise enough as the years have passed.
A special request from the National MS Society One of our top priorities as a chapter is helping local people living with MS overcome the many and varied challenges that come with this disease. We want to be out in the community more, providing programs and services as close to where you live as possible. However, we simply don’t know enough about the people living with MS in our chapter area to do this effectively.
will be treated as confidential and will not be shared. Not only will you be helping us serve you more effectively, but you could also win a $50 Amazon.com gift certificate. Complete the survey by going to nationalMSsociety.org/pae and clicking on “Survey: Help us serve you better”.
If we knew, for example, that we have a high number of people living with progressive MS or people who are newly diagnosed in a specific area, we would be able to provide local programs to meet these specific needs.
If you are in need of assistance of any kind, please visit nationalMSsociety.org/pae to view the services we offer. And check them often. Our list of services is always changing so we can better meet the needs of local people living with MS and their families.
In order to better serve you, we need to make sure we have your accurate personal information on file. Please take a moment to complete this short survey. Your answers
If you have questions or would prefer to give us your information by phone, please don’t hesitate to contact us at 1-800-5484611 or email us at firstname.lastname@example.org. TOLL FREE NUMBER 1 800 548 4611 27
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30 South 17th Street, Suite 800 Philadelphia, PA 19103 ADDRESS SERVICE REQUESTED
1 800 548 4611 nationalMSsociety.org/pae CONNECT WITH US ONLINE:
BECOME A WALK MS AMBASSADOR Do you have a great story about why you’re involved in Walk MS? Are you willing to share that story to help us promote the walk? If so, we need you. You can help us recruit new walkers and teams at your Walk MS site. Your story may be featured in an e-news, a postcard, a video or any number of other media. If you’re interested in this opportunity, please email your story to walkMS@pae.nmss.org or call 1-800-883-WALK.