2011 Issue 2
Greater Delaware Valley Chapter
Menopause and MS
P
eople living with multiple sclerosis (MS) can often experience a host of debilitating symptoms that affect function and the overall quality of life. Women, in particular, face additional challenges as they enter menopause. Menopause is the transition period in a woman’s life when menstruation becomes less frequent, eventually stopping altogether. Because menopause is accompanied by a decrease in estradiol and estrogen hormones, unpleasant symptoms may result. Hot flashes, night sweats, heart palpitations, forgetfulness and mood swings are common.
INSIDE THIS ISSUE:
Continued on PAGE 6
JEVS Supports for Independence Page 8
Walk MS: Medford Lakes Pages 12-13
MS Awareness Week: March 14-20, 2011 Pages 14-15
Advocacy in Action Pages 18-21
Upcoming events 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 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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To register for these or other events, visit calendarMS.org. Tuesday, August 2
Job Readiness Program Week 1: Skills Assessment
Saturday, August 6 St. Luke’s MS Beach Bash
Sunday, August 7
Family Fun and MS Awareness Day with the Camden Riversharks
Tuesday, August 9
Job Readiness Program Week 2: Résumé Development & Clinics
Sunday, August 14
Adapted Basketball, sponsored by the West Chester area YMCA
Tuesday, August 16
Job Readiness Program Week 3: Computer Skills 101
Tuesday, August 16
Social Security Disability Workshop
Tuesday, August 23
Job Readiness Program Week 4: Networking & Communication
Tuesday, August 30
Job Readiness Program Week 5: Interview Clinics
Tuesday, September 6
Job Readiness Program Week 6: Legal Rights: Accommodations & Disclosure
SATURDAY & SUNDAY, September 24 & 25 Bike MS: City to Shore Ride
IN BRIEF
Company Decides Not to Seek Approval of Cladribine for MS
Merck Serono announced in June that it has decided not to pursue approval of its oral therapy Cladribine for the treatment of relapsing forms of multiple sclerosis. According to a company press release, discussions with the U.S. Food and Drug Administration made it apparent that the ongoing clinical trials of the therapy would not address the FDA’s requirements for approval. Details of these requirements have not been made public. Additional therapies, including oral therapies, are currently making their way through the development pipeline. Individuals who have questions may contact MS Lifelines at the company’s toll-free phone number: 1-877-447-3243.
No Link Found Between Stress and Development of MS A new study finds that stress does not appear to increase a person’s risk of developing MS. The study, published in the May 31, 2011 issue of “Neurology,” focused on two large groups of women involved in the Nurses’ Health Study, involving hundreds of thousands of female nurses followed over time. The nurses were asked to report on general stress at home and at work, as well as recall physical and sexual abuse in childhood and as teenagers. Investigators concluded that their results do not support a major role of stress in the development of MS, but that more research is needed to definitely exclude stress as a potential risk factor for developing MS.
Shingles May Be Related to Elevated Risk of MS Taiwanese investigators have found that there can be a significantly higher risk of MS occurring in the year following a shingles, or herpes zoster, attack. The findings, which support a long-held view on how MS may develop, are published in “The Journal of Infectious
Diseases.” Although the study was limited almost entirely to Han Chinese adults, the large scope of this nationwide casecontrolled study, 1.26 million sampled patients, provides strong epidemiological evidence for a possible role for herpes zoster in the development of MS. The authors also point out that MS has a lower prevalence in Asian compared to Western populations and, thus, it may be difficult to project their findings to other populations.
Cough Syrup Treats MS? Researchers have discovered that an ingredient in common, overthe-counter cough syrups called dextromethorphan can alleviate symptoms of MS. The study, published in “Neurobiology of Disease,” found that a low dose of dextromethorphan reduced the loss of myelin and paralysis during periods of acute inflammation – which can last weeks or months in humans with MS – in mice with moderate forms of the disease. The research team is studying the benefits of other cough medicine ingredients that, like dextromethorphan, have molecular structures similar to morphine without the toxicity or addictiveness.
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President’s message
A RESEARCH REVOLUTION Last year, the National MS Society unanimously endorsed a strategic roadmap, titled the Strategic Response: Tami Caesar, 2011-2015, that President identifies what must be done by everyone in our movement to achieve our shared vision of a world free of MS. The response includes five separate and critical goal areas including research, care and quality of life, public awareness, advocacy and business development. To say that the first goal area is of interest to everyone in the MS community is an obvious understatement. The goal states that “we are a driving force of MS research and treatment to stop disease progression, restore function and end MS forever.” It outlines the need for three cures, not one – an approach that illustrates the complexity of the disease and the importance of funding research that will create a better future for everyone affected by MS. Achieving this goal of three cures will take the support – both financial and emotional – of every single member of the MS community. And to rally people to our cause, the Society has launched MS Now: a Research Revolution and has introduced reality TV star Phil Keoghan as the initiative’s official spokesperson.
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Having the host of The Amazing Race TV series speaking on our behalf is great, but everyone affected by MS needs to speak out; every single member of the MS community needs to become an MS Research Champion. We realize that talking about scientific research can be intimidating for everyone outside of the medical community. It’s why the MS Research Champion program includes an online video and training module that explains why support of the Society’s research initiatives is so important. After you complete the program, you will receive a reference card that you can refer to when talking to friends and colleagues about supporting a fundraising campaign, volunteering or getting involved in the movement in some other way. As well, there are links that you can use on Facebook, Twitter and other platforms. The more we talk about stopping MS in its tracks, restoring what’s been lost and ending MS forever, the closer we will get to a world free of multiple sclerosis. Become an MS research champion by visiting nationalMSsociety.org/ NOWchampions. Sincerely,
Tami Caesar President
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R e gi s t e r today / / / MS cycl i n g . o r g o r 1 - 8 0 0 - 4 4 5 - B I K E
BIKE MS : ride
CITY to SHORE //////SEPTEMBER 24 & 25, 2011//////
City to Shore Ride 2011
DO IT FOR THE EXPERIENCE. DO IT FOR THE CHALLENGE. DO IT FOR A WORLD FREE OF MS.
> 25, 45, 75, 100, 150 and 175-mile routes > One or two days
RIDE. VOLUNTEER. DONATE.
1-800-445-BIKE or MSCycling.org
NAMED BY BICYCLING MAGAZINE as the “Best Cycling Getaway in N.J.,” the Bike MS: City to Shore Ride offers the challenge of your choice, with route options from 25 to 175 miles. You’ll start at PATCO’s Woodcrest Station and enjoy flat terrain as you ride through the blueberry fields, the Pine Barrens and sweet smells of salt water taffy and ocean air in historic Ocean City. Then celebrate your success at our festive finish line party.
MENOPAUSE
Continued From PAGE 1 When menopausal symptoms combine with multiple sclerosis, a postmenopausal woman often requires a thorough medical examination to evaluate her options for care. “My menopause symptoms began two years ago,” said Kathy Kimmel of Havertown, Pa. “I was having hot flashes that were so intense I could not sleep. I kept waking up every half hour. This lasted for about six months.” Kimmel, 55, was diagnosed with relapsingremitting MS in 1995 and worried about overheating due to menopause. “I tried talking to my doctor but the doctor kept saying it was normal. My symptoms were getting worse so I went to a second doctor who prescribed hormone-replacement therapy.” Kimmel began hormone-replacement therapy (HRT) in December 2010. Since then, her hot flashes have stopped altogether. However, some side effects including flu-like symptoms, headaches and discomfort have taken their place. “I’m going to speak to my doctor about weaning off HRT,” Kimmel says. “I want to try to control my symptoms without the hormones.” Women experience menopause at varying levels of severity. As a result, not all women require HRT. Discuss the decision to take hormones thoroughly with your doctor, weighing your risks against any possible benefits. Your doctor should be aware of your entire medical history before prescribing hormone therapy. There are some medications available to help with mood swings, hot flashes and 6
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other symptoms. These include low doses of antidepressants such as paroxetine (Paxil), venlafaxine (Effexor), bupropion (Wellbutrin) and fluoxetine (Prozac), or clonidine, which is normally used to control high blood pressure. Gabapentin is also effective for reducing hot flashes.
Lifestyle changes The good news is that you can take many steps to reduce your symptoms without taking hormones:
n Avoid caffeine, alcohol and spicy foods n Dress lightly and in layers n Eat soy foods n Get adequate calcium and vitamin D in food or supplements n Get plenty of exercise n Perform Kegel exercises daily to strengthen the muscles of your vagina and pelvis n Practice slow, deep breathing whenever a hot flash starts to come on (try taking six breaths per minute) n Remain sexually active n See an acupuncture specialist n Try relaxation techniques such as yoga, tai chi or meditation n Use water-based lubricants during sexual intercourse
Menopause is a natural and expected part of a woman’s development and does not need to be prevented. However, there are ways to reduce or eliminate some of the symptoms of menopause. SYMPTOM
MENOPAUSE
MS
Hot Flashes
X
X
Fatigue
X
X X
Numbness Bladder Dysfunction
X
X
Bowel Dysfunction
X
X X
Vision Problems Dizziness
X
X
Loss of Libido
X
X
Pain Difficulty Concentrating Depression
X
X
X
X
X
X
Headache
X
X
Irregular Periods
X
Vaginal Dryness
X
Mood Swings
X
X
You can reduce your risk of long-term problems such as osteoporosis and heart disease by taking the following steps:
MENOPAUSE
Prevention
n Control your blood pressure, cholesterol and other risk factors for heart disease n Don’t smoke. Cigarette use can cause early menopause n Eat a low-fat diet n Get regular exercise. Resistance exercises help strengthen your bones and improve your balance n If you show early signs of bone loss or have a strong family history of osteoporosis, talk to your doctor about medications that can help stop further weakening n Take calcium and vitamin D Menopausal women who also have multiple sclerosis contend with challenging and sometimes debilitating symptoms. With the appropriate medications and lifestyle modifications, women can forge ahead through the transition of menopause and multiple sclerosis while living full, enjoyable lives.
For more information and for tips on managing your
symptoms, visit nationalMSsociety.org. If you’d like to share your story or voice your frustrations, please call us at 1-800-548-4611 or email us at pae@nmss.org. TOLL FREE NUMBER 1 800 548 4611
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Services
JEVS PROVIDES SUPPORT, CHOICE AND INDEPENDENCE Joanna Carmon loves getting out of the house, going to church and visiting friends. But her diagnosis with MS 12 years ago would have made her a captive in her own bedroom, if not for help provided by a personal care assistant through JEVS Supports for Independence. For seven hours each day, an assistant helps Carmon bathe, dress, prepare meals, take care of light housekeeping and venture out of her home. “It would literally take me all day to take a shower if I didn’t have an assistant to help me,” the Philadelphia resident said. JEVS’ service coordination enables people with disabilities to remain at home and live independently, said Dina Sanz, the organization’s director of operations and state projects.
“If they’re diagnosed with progressive MS and now need substantial care, they can come into a program like ours and not find themselves in a nursing home at 30, 35, 40 – even 70, if they don’t want to,” she said. The key to JEVS’ services is the personal choice they provide, Sanz said. Consumers select their service coordinator within JEVS, who then works with them to develop a plan for the care they need and help select and hire their assistant. Assistants could be professionals identified by the organization, or they could be a neighbor, friend or family member. “The consumer is in control,” she said. “It’s all about empowerment, self-direction and choice.” As the consumer’s agent, JEVS handles background checks, workers’ compensation and paycheck deductions for taxes and Social Security. JEVS’ attendant care and service coordination are supported by federal and state funding, and are free for most clients. Some may pay a copayment on a sliding scale based on their assets and income. All consumers must be eligible for care in a nursing facility. For someone living on a fixed income, the services provided at no cost by JEVS and their assistants are life-changing, Carmon said. “JEVS has given me my independence,” she said. “They’re amazing.”
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For more information, please call 267-298-1364 or visit jevshumanservices.org.
Multiple sclerosis is one of the top three disabilities affecting JEVS’ 4,000 clients in Pennsylvania. So when staff members wanted to get involved in the community, it was only natural that they would reach out to an organization that supports the customers who have also become their friends. “Many of our staff get to know our consumers personally and are important parts of their lives,” said Erin Rinn, Director of Community Relations for JEVS Supports for Independence. “The staff members want to show their commitment to the people they serve in ways that go above and beyond the services they provide.” JEVS staff members have made their marks
in a number of ways over the past several years.
WAMS
JEVS staff makes a difference after hours, too
About 40 staff and family members took part in Walk MS at Elmwood Park Zoo on April 17. Their involvement also includes volunteering at Bike MS: City to Shore Ride, greeting guests at the 2010 MS Dinner of Champions, exhibiting at educational programs and serving on the Women Against MS committee. “It’s so important to have people on your team who truly understand volunteerism and what it takes to achieve success as a nonprofit organization,” said Kristina McGraw, the chapter’s vice president of development. “JEVS staff members are excellent allies -- they are compassionate, motivated and eager to tackle any task that comes their way.”
WOMEN AGAINST MS LUNCHEON RAISES MORE THAN $105,000 TO HELP PEOPLE LIVING WITH MS More than 500 attendees gathered at the Crystal Tea Room in Philadelphia to honor Woman of Spirit awardee Reneé Amoore during the ninth annual Women Against MS (WAMS) luncheon on May 3. The generous support of our sponsors, table hosts and guests made it possible for WAMS to raise more than $105,000, making this our most successful WAMS event ever. The funds raised are essential to research projects taking place locally and in centers around the world, as well as providing critical programs and services for local people living with MS.
Molly Shepard and Reneé Amoore at WAMS 2011
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EMPLOYMENT
Employment Conference Recap
T
he Greater Delaware Valley Chapter recently held its first employment conference for people with MS. Highlights of the day included a keynote presentation from Dr. Phil Rumrill, Professor of Rehabilitation Counseling and Director of the Center for Disabilities Studies at Kent State University. Widely recognized for his expertise in the field of employment and MS, Dr. Rumrill shared his expertise and resources to participants. The first 75 individuals who registered and attended the conference received a copy of Dr. Rumrill’s book, “Employment Issues and Multiple Sclerosis.” The day also offered six breakout sessions covering topics about staying positive during the job search, symptom management, identifying skill sets, job readiness, legal rights and networking. The presenters included career coaches, managers of staffing agencies and nurses.
Listen to the sessions at MSworks.org. In addition, a mini job fair was held with nine employers and five service providers, allowing participants to connect with employers and valuable resources. A few participants reported being offered interviews on the spot. Lastly, 10 JOIN THE MOVEMENT: nationalMSsociety.org/pae
The Business Advisory Committee helped develop the first MS Employment Conference: Gwen Faulkner, Magda Moncrief, Christina Forster, Jeff Tertel, Stacey Asbell, Jamie Ray-Leonetti and (not pictured) Jim Mulhern and Ang Onorato during lunch three professionals living with MS shared their journey of employment. The panelists answered questions about disclosing to their employers, asking for accommodations and their successes and challenges of maintaining employment while living with MS. Each participant received an “MS Employment Toolkit” with information and worksheets covering all aspects of finding and maintaining employment. This toolkit is also available on the MSWorks website. The conference was made possible by the generous support of the Kessler Foundation under the guidance of the chapter’s Business Advisory Council. We’re now offering a free six-week Job Readiness Program, designed to help those currently seeking employment and those who have a job but could benefit from skills training. Sessions include topics from résumé development, computer skills, interviewing to legal rights. All of the sessions will take place at the chapter office in Center City Philadelphia on Tuesdays from August 2 through September 6. Learn more at MSWorks.org.
In order to qualify for SSDI (Social Security Disability Insurance) benefits, a person needs to have paid sufficient FICA taxes, thereby earning “work credits,” in addition to having a disability that makes holding a regular job impossible. Visit ssa.gov/pubs/10029.html for an overview of eligibility requirements and work credits, which are earned each quarter of a year an individual is employed. The SSA (Social Security Administration) recognizes MS-related difficulty with motor skills, concentration, memory, fatigue, vision or side effects of medications as among the criteria for receiving benefits.
The SSA will require the following: n The names and contact information of doctors, caseworkers, hospitals and clinics involved, the dates of visits and copies of any medical records n The names and dosages of all prescription medicines
Society. “Without that, your claim may be turned down and you’ll have to appeal.” “We also recommend that you journal your symptoms,” Erickson added. “A description of what is happening on a day-to-day basis can make a big difference, especially if you have invisible MS symptoms. Saying ‘extremely tired,’ for example, is less useful than saying ‘MS fatigue, four 45-minute naps a day that interfere with bathing, eating, cleaning the house.’”
SSDI
HOW TO GET STARTED WITH SSDI
You can apply online at socialsecurity.gov/applyfordisability. Or call 1-800-772-1213 to schedule an in-person or phone appointment. Keep copies of all the information you give to or receive from the SSA, as well as the contact information for your SSA interviewer. Be patient, persistent and punctual. “And don’t be afraid to ask for help,” Erickson said. An MS Navigator® can provide you with materials to help with the initial application; call 1-800-344-4867. In the event of a rejection, the Navigator will connect you with the appropriate professionals to assist in organizing an appeal. For more information, visit nationalMSsociety.org/SSDI or socialsecurity.gov/disability.
n Laboratory and test results n Work records from your employer n Letters from colleagues or supervisors that support the claim
Start the process Ask your neurologist (and occupational therapist, if relevant) to evaluate your ability to continue working. “Make sure you have your doctor’s help and encouragement from the beginning,” said Kris Erickson, MSCIR, MSSMC, health insurance manager of the National MS TOLL FREE NUMBER 1 800 548 4611 11
walk ms
Walk MS: Medford Lakes
O
n Sunday May 1, the town of Medford Lakes, N.J. turned orange for multiple sclerosis. Walk MS: Medford Lakes was a great success, bringing over 700 people and raising more than $61,000. Led by volunteer and Walk MS Shannon WalshChairperson Shannon Bacchus, Walk MS Walsh-Bacchus, the Chairperson event, now in its second year, went off without a hitch. We caught up with Shannon and asked her about her experience. How did the idea of a Walk MS community event come about? In 2008, I was laid off as an executive from a company I worked for 10 years. After the initial panic wore off, my son suggested I do something that I really wanted to do, instead of something I had to do. He was right! As a family we decided to pursue starting a walk 12 JOIN THE MOVEMENT: nationalMSsociety.org/pae
in our home town of Medford Lakes. We knew Medford Lakes was the perfect location because it is an amazing town that truly illustrates the meaning of “community� every day of the year. We are additionally blessed to be surrounded by neighboring communities that are just as inspirational. What inspired you to get involved with the MS Society? The love of my life, Rick, has MS. Loving someone who lives with pain daily and not being able to make it disappear made me feel helpless. I had to do something for him and our family. I wanted to, in my small way, at least raise awareness about the experience of MS. With the small efforts of many comes awareness and change. How did you get started working on this event? In 2009 I put a business plan together, asked for local support from my municipality and then contacted the Greater Delaware Valley Chapter with my idea: they said YES! Over the course of the next six months, my family and I began seeking volunteers, spreading
walk ms
awareness about the walk and seeking sponsors to support the walk day celebration. When did you hold your first Walk MS: Medford Lakes event? Our first walk took place on Sunday, April 18, 2010. It was cold and raining but that did not dampen the more than 500 walkers and volunteers who attended. We raised $58,000! This year we had 637 walkers, 127 volunteers and raised $61,292.73. Thanks to the support of many, we had an amazing day! What other Society events are you involved with? As a family we volunteered last year at Bike MS and Mud Run MS. Rick supported the Society’s job fair by rallying his company, Target, to host a booth. My daughter Micky, who turned 16 in March, asked all her friends to make donations to her Walk MS team as Sweet 16 gifts; and my son Zac, 17, is my operational guru; I would not have been able to pull off two years of walks without his muscle, planning and motivation. The rest of my core team are my mom, Lyla; my dad; Dan, my Aunt Barbara and Uncle Lud.
Olympic medalist Carl Lewis, center, with Walk MS: Medford Lakes participants Anything else you’d like to share with us about Walk MS: Medford Lakes? I am so proud of our Walk MS community -- the neighbors, friends and family that came together to make a difference and did! Our community isn’t just Medford Lakes; it’s many, many surrounding towns near and far: Medford, Indian Mills, Philadelphia, Florida and more. In such a short time we have formed life-long memories. I am so humbled by the local businesses that give of their resources and the many volunteers who selflessly gave of their time. I am so excited to see what each new walk campaign brings. We have started a tradition that will provide support, community, awareness and hope for years to come. For more information about Walk MS: Medford Lakes, visit facebook.com/walkMSmedfordlakes, follow on Twitter @walkMSmedlakes or contact Shannon Walsh-Bacchus at shannon@walkMSmedfordlakes.com.
Rick Lombardo with our team, In Walking Distance, at Walk MS: Medford Lakes 2011
TOLL FREE NUMBER 1 800 548 4611 13
Awareness
MS Awareness Week This spring thousands of people across the nation celebrated MS Awareness Week. Here in our region, the chapter launched a new campaign to raise awareness of MS and to let your voices be heard. What does MS mean to 13,000 local people? To most people living with it, the letters “MS” mean more than “multiple sclerosis.” MS can mean: n Not being able to walk your daughter down the aisle on her wedding day n Losing your ability to work full time n Not being able to see your children play sports n Depending on others to do daily tasks Many people simply don’t understand what MS is or what it does to all those affected by it. That’s why we launched the “MS Means” campaign during MS Awareness Week, March 14-20.
Join the conversation and let us know what MS means to you. Visit MSmeans.org to share with the world how the disease has affected your life.
MS Means…
We asked and you answered. Here are some of your comments on what MS mean to you: “MS means I am a life-long “patient,” always relying on others for daily care; I have and will miss numerous plays, games, social functions and just plain hanging out with my family; I will not be able to dance at any of my three children’s weddings; I will not be able to babysit any of my future grandchildren.” ~Wendi, Petersburg, N.J. “MS was why my Mom needed a cane, a walker, a wheel chair, and a hospital bed at home. MS is what my Mom fought against for 25 years. MS made me angry. MS is my diagnosis. MS is what I’ve been fighting for 4 years. MS drug therapies mean there will be no cane for me.” ~Veronica, Philadelphia, Pa. “MS means I can’t take long walks … so I take real short ones.” ~Albert, Upper Darby, Pa. “MS means I have found strength that I never knew I had, energy that I didn’t think existed. I know that if I can push through this, I can be a role model for my kids so that they can do anything they want in life.” ~Megan, Gilbertsville, Pa. “MS means putting aside old dreams and working on new ones.” ~Christine, Mountainhome, Pa.
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“MS means I get to see the beauty in total strangers.” ~Kathy, Pedricktown, N.J. “Having MS is like living on an earthquake fault line, either waiting, or oblivious to the fact. You can build an empire only to have it all fall down, then rebuild it, and again watch it fall down. MS also means freedom, ironically. When all this happens to you, you are left with a new opportunity, to take what you may have left and put it all together any way now that is possible and you see fit. But you’re never off the fault line.” ~Tom, Philadelphia, Pa.
Call for Nominations The Greater Delaware Valley Chapter of the National MS Society is seeking nominations for new trustees.
TRUSTEES
“MS means I have to trust in myself, and trust the people I love. It means I have to forgive and let things go, because I’m too weak to hold the world on my shoulders anymore. It means I have to try new things, because tomorrow I may not be able to do them. It means I have to tell the people that mean so much to me that I love them, because tomorrow I may not be able to speak correctly. And I have to take in all that is beautiful, because tomorrow I may lose my sight. Your body is not invincible, but your spirit is.” ~Erica, Pennsville, N.J.
All members are eligible to nominate candidates for the board of trustees. Nominations must be mailed by September 1 to the address below. Please provide the name, address, phone number, email address and a brief background of the nominee, in addition to your own name, address, phone number and email address. For more information about the board nomination process or the chapter’s governance, please call 1-800-548-4611. Nominating Committee National MS Society 30 S. 17th St., Suite 800 Philadelphia, PA 19103
“MS has let me know who’s in my corner and who is not.” ~Deborah, Girardville, Pa. “MS means that my life is not exactly how a kid’s life should be. In 2007, my mom found out that she had MS. This is hard for all of us. She can’t do normal things like to go places with me. It is not fun going without her. I know some things don’t change but I wish the MS would go away. I LOVE HER. I know she is strong. She can fight this. That’s me and my mom and life with MS.” ~Michele, 10, Philadelphia, Pa. TOLL FREE NUMBER 1 800 548 4611 15
Research
New Clinical Research Supports Low-Dose Naltrexone MS Patient User Experiences By Malcolm West, Co-founder, LDNaware.org
R
ecent research funded by the National Multiple Sclerosis Society has delivered promising results using low-dose Naltrexone (LDN), a compounded version of the FDA-approved generic drug, Naltrexone: Prevention and diminished expression of experimental autoimmune encephalomyelitis by low-dose naltrexone (LDN) or opioid growth factor (OGF) for an extended period: Therapeutic implications for multiple sclerosis. ncbi.nlm.nih.gov/pubmed/21256121 EXCERPT: “These results indicate that treatment with OGF or LDN had no deleterious long-term repercussions and did not exacerbate EAE, but i) halted progression of disease, ii) reversed neurological deficits, and iii) prevented the onset of neurological dysfunction across a considerable span of time.” These study findings are important because they validate what many people who now take LDN for their MS have been saying for years – that LDN slows, if not halts disease progression, and improves many debilitating MS symptoms, such as fatigue, cognitive difficulties, spasticity, pain and incontinence. Another study recently conducted at the Institute of Experimental Neurology in Milan, Italy supports this 16 JOIN THE MOVEMENT: nationalMSsociety.org/pae
research, but with humans instead of mice. In the six-month clinical trial of 40 patients with primary-progressive MS, neurological disability increased in only one patient and a significant decrease in spasticity was measured. A pilot trial of low-dose naltrexone in primary-progressive MS. ncbi.nlm.nih.gov/pubmed/18728058 The Italian study is of particular relevance since no FDA-approved drugs have been found effective therapies for PPMS. Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts. By blocking opioid receptors, Naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: betaendorphin and metenkephalin. In the early 1990s, doctors found that Naltrexone taken at a low dose of about one-tenth strength, briefly blockades opioid receptors and produces a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. People who take Naltrexone in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days. Many people who take LDN choose to do so before bedtime as it is believed that this blockade is more effective while asleep.
Research and Lupus, these autoimmune diseases have similarities with MS.
Generally, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body’s normal production of endorphins is the major therapeutic action of LDN. People with MS are often found endorphin deficient and neurologists advocate regular exercise and vitamin D supplements, which help release endorphins, as a way to manage MS. LDN research has also been moving forward with Crohn’s Disease, where at Penn State a Phase II Study is ongoing for efficacy in children and adolescents and at Stanford University for Fibromyalgia. Along with Rheumatoid Arthritis
Editor’s Note: As with any alternative approach or therapy, the National MS Society strongly recommends you discuss low-dose Naltrexone with your neurologist. For more information about it, please review the article by Dr. Allan Bowling in the Spring 2009 Issue of Momentum magazine. In this article, Dr. Bowling wrote: “Like most of my colleagues, I believe we need answers before LDN can be considered a reasonable
Today, people with MS obtain LDN by prescription either through a compounding pharmacy which make capsules to order from Naltrexone powder at a cost of about $35 a month. LDN can also be made in liquid form by dissolving 50mg Naltrexone tablets in distilled water and drawing off a low dose by medicine dropper. More detailed information on current LDN research and how it was discovered can be found at the following websites: lowdosenaltrexone.org LDNscience.org LDNers.org LDNaware.org
MS therapy. But because the medication is already FDA-approved for other uses, it can be acquired. Some people with MS may be interested in considering this therapy now. They should be aware of all the limitations of the current scientific information as well as liability and insurance issues (typically insurance will not cover LDN for MS) and discuss the information in detail with a knowledgeable health-care professional.” TOLL FREE NUMBER 1 800 548 4611 17
ADVOCACY
Public Policy Conference 2011 More than 300 MS Activists gathered in Washington D.C. on March 7-9, 2011 for the National MS Society’s Federal Public Policy Conference. Activists learned about the Society’s federal issues and then met with their federal legislators to discuss issues that impact people with MS, both federally and in their home state. Representing the Greater Delaware Valley Chapter were Sarah L. Gibbons, Howard Goldstein, William Monahan and Robert Pfisterer of Pennsylvania and Pamela Trosino of New Jersey. There were several issues that activists discussed this year. The first is funding for MS research through the Congressionally Directed Medical Research Program (CDMRP) in the amount of $15 million. The CDMRP is funded through the Department of Defense. MS Activists have been successful in securing research funding through the CDMRP in the past – over the past three years, $13 million was dedicated to MS research. Emerging evidence indicates a potential link between combat service and an increased incidence of MS. CDMRP research can help the more than 20,000 U.S. veterans receiving care through the VA who have a diagnosis of MS. The second issue is the support of the Adult Day Achievement Center Enhancement Act. This act aims to establish a competitive grant within the Administration of Aging
18 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Lisa Torre-Janssen of the New Jersey Metro Chaper and Robert Pfisterer, representing the Greater Delaware Valley Chapter at the Public Policy Conference 2011 in Washington D.C. to sustain and grow adult day centers that focus on the younger disabled population. These centers provide stimulating activities, community engagement, dignified care, medical monitoring and therapy. Studies also show this is a better and more cost effective alternative to nursing homes, helps lower hospital costs and reduces medical costs. The third issue is improving access to neurological care by including neurologists as primary care providers in the Patient Protection and Affordable Care Act. Neurologists were omitted from the Act, thereby excluding neurology from a list of medical specialties eligible for a Medicare bonus payment. Due to the complex nature of MS, people prefer to see a neurologist as their primary care physician. Senate bill S. 597 would allow neurologists to qualify for Medicare payment incentives as primary care physicians. Without this legislation, neurologists are only able to bill for services rather than time spent with patients. This decreases the
long-term care resources, and affordable health care. The MS Caucus also works to raise awareness and education about the disease.
Advocacy
number of neurologists willing to spend the needed amount of time with MS patients, because they are unable to receive proper compensation for their efforts. This lack of compensation is also causing a decrease in the number of neurologists entering the field. Lastly, MS Activists urged their legislators to join the Congressional Multiple Sclerosis Caucus. The bi-partisan Congressional MS Caucus, in the House and the Senate, serves as a forum on the critical issues affecting people living with MS and other conditions. The 105 Representative and 22 Senate members of the Caucus engage in discussions and seek creative solutions for MS issues, such as access to quality health care, increased research,
My Experience at the Public Policy Conference By Pamela Trosino, New Jersey As I stood shoulder to shoulder with people living with MS from around the country all sharing the same mission, I reconfirmed the importance to increase awareness within our Pamela Trosino communities. We went to Capitol Hill to ask our Senators and Congressmen for support on key priority issues that will positively impact the legislative agenda within the Delaware Valley communities and around the U.S., improving the lives of those living with MS.
Speaking to our legislators on Capitol Hill I had confidence knowing the people I represented are committed to bring our cause, issues and priorities to our political leaders who make a difference in our lives. 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. INTERESTED IN TAKING PART IN THE NEXT PUBLIC POLICY CONFERENCE? We will be selecting four people to represent our chapter in Washington D.C. in 2012 through an essay contest. Look for more information and an online application this December. TOLL FREE NUMBER 1 800 548 4611 19
ADVOCACY
MEET YOUR LEGISLATOR U.S. Congressman Pat Meehan Pennsylvania District 7 Elected in 2010, Congressman Meehan represents Pennsylvania’s 7th Congressional District in the United States Congress. What are your legislative interests and top priorities? The biggest issues on the minds of my constituents are creating jobs and growing the economy. Without a doubt, those are the issues I hear about most often, and it is my top priority in Congress to advance an agenda to create jobs and spur economic growth for middle-class families in Southeastern Pennsylvania. Through my work on the Oversight and Government Reform Committee, I am committed to holding government accountable and ensuring our health-care programs are serving people in need in a responsible way. On the Transportation and Infrastructure Committee, I am fighting to improve the safety and effectiveness of our highways and transportation infrastructure. I am also Chairman of the Homeland Security Subcommittee on Counterterrorism and Intelligence, where I’m working to project our national security and guard America against terrorist threats to our shores. What do you think government can or should do to provide people with disabilities with the care they need? I believe the government has an important role in protecting people with disabilities and removing barriers to accessibility and giving
20 JOIN THE MOVEMENT: nationalMSsociety.org/pae
access to the care they need. One thing I am doing to assist is to push bipartisan legislation to encourage American firms to invest in greater research and development into new treatments and therapies for conditions like multiple sclerosis and other disabilities. I am also working to pass a measure that will give states more flexibility to direct health-care funding where it can be most effectively used and focused. What’s the best way for constituents to work with you? It is very important to me that I hear from my constituents often, and I want to make sure I am easily accessible. Through my “online office,” constituents can contact me via my website (meehan.house.gov), Facebook (facebook. com/CongressmanPatrickMeehan), and Twitter (@RepMeehan). Constituents are also invited to call my office: District Office - 610690-7323, D.C. Office - 202-225-2011. Why is it important for people to get involved in advocacy? Among our constitutional rights is the right to petition our government and demand changes from our elected representatives. This is a cherished right, and advocacy groups like the National MS Society show why it is so important and enshrined in our Bill of
Have you participated in any National MS Society events? If so, which ones and how was your experience?
N.J. Lobby Day recap
and assistance we can provide.”
O
n March 14, people living with, or affected by MS from all over New Jersey took to Trenton to partake in N.J. Lobby Day. The N.J. residents met with legislators and policy makers and asked for their support on crucial issues important to individuals with MS. The Greater Delaware Valley Chapter joined with the New Jersey Metro Chapter for this annual event. Lobby Day participants had the opportunity to learn about legislative issues affecting people with MS and the basics of advocating for themselves. In addition, they heard from legislators directly and observed laws being made at an assembly voting session. One highlight of Lobby Day included meeting with Senator Fred Madden who sponsored new legislation that would establish the New Jersey Multiple Sclerosis Task Force in the Department of Health and Senior Services. “This task force is a cost free measure that will provide assistance to the thousands upon thousands of New Jersey residents who struggle with multiple sclerosis every day,” said Madden. “The fact is that we, as elected representatives, have a responsibility to provide these individuals with whatever aid
In April, I participated in a 5K walk to benefit the National MS Society held at Ridley Creek State Park. I was glad to be a part of such a great event that raised money for a very worthy cause. I look forward to taking part in more events in the future.
Advocacy
Rights. By providing a strong and organized voice for individuals, the National Multiple Sclerosis Society leverages their numbers to affect change, educates our elected officials on important issues and holds them accountable. I salute all the staff and families who put in so much time and effort to making the Society such an effective advocate on medical research and disability issues. Your dedication and hard work give us continued hope for a brighter future for those living with MS and their families.
Under the legislation, S-2212, the task force would develop strategies to From left to right: Jim Roberts, identify and President, New Jersey Metro address the Chapter; Assemblyman unmet needs of Robert Schroeder; individuals with Assemblywoman Charlotte MS in order to Vandervalk and Tami Caesar, provide them President, Greater Delaware with greater access to various Valley Chapter treatments and other therapeutic options. The task force would focus on issues impacting the productivity and independence of individuals with MS. It would also review issues impacting emotional, social and vocational challenges of persons with MS. The 14-member task force would include state health officials, representatives of the National Multiple Sclerosis Society and individuals living with MS, among others. The legislation has passed the full Senate and now heads to the Assembly. TOLL FREE NUMBER 1 800 548 4611 21
Top 5
top
5
Tips for preschooler parenting for people living with MS
1. Conserve energy: Don’t try to do
everything. Enlist your spouse, partner or parent to do physically taxing tasks and play with your child while you rest. Alternate more physically active days with less active ones, and be aware of when fatigue is the most difficult for you so that you can plan around it. And by all means, use a stroller when you’re out with the kids.
2. Enlist your kids: Little ones love to help
out. Let them sort laundry and do other chores, and encourage them to walk up stairs, climb into their carseats and do other independence-building tasks that make your load a little lighter. And invite them to this year’s Walk MS to join our community – many older kids love to fundraise!
3. Manage your pain: Talk with your doctor
about controlling pain symptoms by taking a little medicine throughout the day rather than large doses or changing your medication schedule so your pain is under control during high-stress times like meals and bath time.
22 JOIN THE MOVEMENT: nationalMSsociety.org/pae
4. Create
alternatives: When fatigue, vision problems, numbness or other symptoms flare, give children other options. Offer a backup activity so you’re not always saying no, or split activities into parts that can be taken over two days. For days when you’re exhausted and need more rest, keep a basket of special books, games and videos so the kids can play with you on your bed.
5. Give your kids credit: Don’t assume
that problems like nightmares or temper tantrums are attributable to your MS. These are common developmental concerns. Preschoolers may not understand MS exactly, but they can be very empathetic. Their ability to recognize and accept parents’ differences and limits without judging can be the foundation for a better, more compassionate understanding of people in general.
Many thanks to all of our volunteer fundraisers who are helping create a world free of MS. Kudos to Matt Pawlowsky, Dan York, Matt Bogan and friends who hosted the National MS Society Dance-a-Thon at Philadelphia Academy Charter High School in December. The event, which began as a senior project, raised $4,200. The project had two parts – a written paper about MS and an action plan that correlated with the paper. Pawlowsky and friends decided as a group to run a fundraising event and donate the proceeds to the Society. Over 200 students came out to support this event which included a DJ, prize giveaway, dance-offs and a huge game of limbo.
The High Street Grill in Mt. Holly, N.J. held the “Longest Beard Contest” this past February through March. Participants went in to “show their face” in the beginning of February and continued growing their beards until the conclusion of the contest on March 17th. The restaurant also had guest bartenders each Wednesday throughout the competition and raised additional funds using tip jars that were stationed at the bar. The event raised more than $3,000 and the proprietors are looking to stay involved with the Society as well and continue fundraising.
On April 10, Dana Moffo hosted Zumba® for the Cure at the Horsham Community Center. After volunteering at various MS events over the years, Dana decided to host this fun fundraising event as her high school graduation project. She raised more than $1,800 under the guidance of her mentor Betty Stewart, who is a top fundraiser in our Bike MS: City to Shore event for many years now.
Michael Shapiro, Geoff Gross and Nicole Albert kicked off the first annual Flip Cup Tournament to benefit the National Multiple Sclerosis Society. Participants signed up individually or as part of a team and competed in a March Madness-style bracket. The event took place on March 14 at Philly Pub & Grub and raised more than $1,100.
FUNDRAISING
Community fundraising all-stars
GADGET CORNER: Big Button™ Universal Remote Control Simple to use, the Big Button™ Universal Remote Control can control up to four devices including a TV, VCR, DVD player and even a cable box or satellite dish. The buttons are extra-large, measuring 5/8" with bold black characters in high contrast to the white buttons. The keys even light up for easier recognition in a dark room. Works with two AA batteries, not included. Retail price $23.00. To order or find out more, visit Dynamic-Living.com and enter item #DL1005. TOLL FREE NUMBER 1 800 548 4611 23
Column
TO MEDICATE OR NOT By Jen Erickson
I
t was winter, a somber season. It was a new relationship, the forever one. It was the end of my licensure requirements and very long hours. It was a family crisis and really hard decisions. Hello MS, thanks for joining the party. Depression, numbness, and electric shocks down my spine got me three hours of MRIs in December. The findings: a new active brain lesion and a couple recent plaques at C2. Neurologists are funny Jen Erickson when fascinated. The doctor not only explained the bad location of my C2 plaques, but also paraplegia. He meant well. I absorbed the science and sat with the implications. Paraplegia and running won’t mix, I cried to my boyfriend. New fears of progression overwhelmed me, likely because I have more than ever to do and live for, and I decided holistic living would have to allow traditional medicine. In January, after 12 med-free years with MS, I started Copaxone and entered the Copaxone/ Estriol trial. I consider Copaxone a relatively benign treatment for MS. Estriol is a form of a hormone known to my body, tolerated well in high amounts during my MSfree pregnancies and one I may need to supplement as I age anyway.
24 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Still, it was a hard choice. As any of you with RRMS knows, the pros and cons of drug treatment can shift with the disease. During attacks, meds seem the way to go. Worrisome side effects and safety profiles take a back seat to horrible symptoms and disability scenarios. With the prescription on top of the filing pile, we pray, rest, eat well and get help. When symptoms remit, we’re happy, reliable and productive again. Who needs meds? Selfcare was treatment enough! So, we resolve to live well, adapt to losses of function, banish thoughts of wheelchairs and throw that script away. My view of MS and the ups and downs has bordered on grandiose. Though my cord is littered with plaques, my brain is pretty clean and I can still work and run ultramarathons. I am healthy – not disabled. Depression, fatigue and stress result from errors in training, habits and thinking. I believe that I am responsible for relapses – not MS. Mindful correction of my errors always helps me. I am responsible for remissions – not meds. In my holistic “ownership” of the disease process, I absolutely meant to control it. Agreeing to meds felt like a huge – and hypocritical – defeat. As a mental health therapist, I’m devoted to the idea that health and happiness are found at the crossroads of acceptance and defiance, not at the pharmacy. I’ve seen weaknesses embraced become strengths undeniable. If medications dim awareness, we may not be as realistic about self and circumstances, or as motivated to change them. With a few exceptions, no substance or process should
ease suffering to the extent that we lose our curiosity or courage about it.
When genes, environment and viruses colluded to turn on my MS, I had to accept the limits on my mobility and mood. I also had to believe I could defy them by minimizing stress, increasing support and taking excellent care of myself. It’s been hard to know along the way whether to work harder at defying MS or accepting it, whether to take better personal control of my mind and body or surrender to the insidious progressive nature of this disease – and, therefore, the pharmacy. I’ve reconciled the choice of drug therapy realistically and imperfectly. I’ve considered where I am and where I want to go in my life. I have smart, active daughters. I enjoy running long distances, and I want to start a business. I found the love of my life, and we have big plans. I want to have a puppy. I chose drug therapy as insurance against the stress of being an overachiever. It’s still and always on me to listen to the clues of mind and body, to sacrifice unhealthy habits and views, to care for myself in ways medications cannot.
Celebrate summer at Dorney
FAMILY
I do not think drug therapies are bad. I think they’re generally overprescribed. Whenever possible, we should approach illness patiently, thoughtfully. We should wonder, with as much clarity as we can, just what our mental unease and physical diseases have to tell us about our choices and lifestyles. These are loaded topics, to be sure. But how I view suffering defines how I treat it.
Summer days at Dorney Park & Wildwater Kingdom are a Greater Delaware Valley tradition. Local people living with MS and family members can save $8 on regular admission to the park and $2.99 on junior and senior tickets for any day during its 2011 season. Limit 12 tickets per transaction. To order, visit http://mygroup.dorneypark.com and enter our company ID: “fightMS.” The park season runs through October 30.
TOLL FREE NUMBER 1 800 548 4611 25
FACE OF MS
Face of MS: Peter Hopkins Covered in mud from head to toe, Peter Hopkins of Philadelphia crosses the finish line at the second annual Mud Run MS Philly in Newtown Square, Pa. The 51-year-old choir director and church musician had been training for this event all year. A secondtime participant, he knew he needed to be in shape Peter and Paula Hopkins
to keep up with the challenges of the course.
“The obstacles I faced here today are nothing compared to what my wife deals with every day,” said Hopkins. “She’s a true fighter.” Hopkins’ wife, Paula, was diagnosed with primary-progressive MS in 2005. Primary-progressive MS is characterized by steadily worsening neurologic function from the beginning. Although the rate of progression may vary over time — with occasional plateaus and temporary, minor improvements — there are no distinct relapses or remissions. How is primary-progressive MS different from relapsing/remitting MS? Most people have relapsing-remitting MS. With primary-progressive MS, the weakness, pain and inability to move are always there. You always feel it. 26 JOIN THE MOVEMENT: nationalMSsociety.org/pae
What was your reaction to her diagnosis? In many ways my reaction to her diagnosis was relief! After years of worsening health issues but no answers, the diagnosis of MS allowed Paula to receive the proper medications, instead of just treating peripheral symptoms. Before her diagnosis, she had several unnecessary surgeries to treat what turned out to be MS. You’re always better off knowing than not knowing! As a caregiver to someone living with MS, how do you cope with the stress of her diagnosis? It may sound trivial, but one of the most helpful things I do is to wear one of the orange MS wristbands. I never take it off; it helps remind me of what she is going through. MS is a disease that is often “invisible;” to the casual observer the person looks fine, but they can be in great pain. Another thing I’ve done is to improve my
What tips would you give other caregivers? Everyone’s MS situation is so different; it’s hard to offer advice. I’ve tried to follow advice that I’ve seen in MS Society publications, such as take care of yourself as well as your loved one, have a stress-reducing hobby, etc. I also pray. A lot.
My wife is lucky she can still walk. If she can do that, I can do a silly mud run.
FACE OF MS
own health and make it a priority. I exercise almost daily and work regularly with a personal trainer. I’m a type II diabetic, but because of my exercise regimen, I’ve been symptom-free for over three years. Regular, intense exercise is as good for your mental and emotional health as it is physical. Exercise is an incredibly productive way to blow off steam, reduce frustration and anger, and just plain feel better about life in general!
MUD RUN MS PHILLY 2011: GETTING DIRTY NEVER FELT SO GOOD You ran, jumped and climbed your way through six miles of muddy fun for those who couldn’t. Congratulations for making Mud Run MS Philly 2011 a success! Together you raised more than $800,000. In only its second year, Mud Run MS Philly grew from 1,000 participants in 2010 to nearly 4,000 this year, raising much needed funds for vital programs, services and research for a world free of MS. Registration is now open for Mud Run MS Philly 2012! Visit MudRunMSPhilly.com for more information. Hopkins at Mud Run MS Philly 2011
TOLL FREE NUMBER 1 800 548 4611 27
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 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.
Thank you to the following individuals for their commitment to the MS movement*:
Mrs. Melissa M. Brown Mrs. Rosemarie J. Buck Mr. William Bujalos Mr. and Mrs. David M. Burns Mrs. Eileen Bushelow Mr. John Charles Butts Mr. David M. Alcaro Mr. Robert and Nicole Almond Ms. Tami Caesar and Mr. Steve Karlovic Stan and Lisa Altman Mr. and Mrs. Daniel Calabrese Steven and Stacey Asbell Mrs. Megan Caldarelli James W. Babcock Mrs. Barbara Cantor Ms. Jane Balascki Mr. and Mrs. James Carrigan Dr. Marisa F. Baldassano Mr. and Mrs. James Dr. and Mrs. Allen Bar Cavanaugh Mr. and Mrs. C. Minor Mr. Joseph P. Cherone Barringer Ms. Lois Chilleo Mr. and Mrs. Jack Beiter Mr. and Mrs. Thomas Clifford Mr. James H. Bell Mr. and Mrs. Sylvan Cohen Joseph Belluck Mr. Nathaniel Cohen Mr. Steven D. Berkley Abbi L. Cohen, Esq. Joanne Berwind Dr. Linda S. Cohen, MD Mr. Michael J. Betsch Mr. Timothy Connors Mr. Mark A. Bevevino Mr. Steven Cooperstein Mr. Rajeev Bhaman Mr. Robert J. Corrigan Mark and Lynda A. Bideau Ms. Karin Costello Ms. Lynn Biehn Ms. Kim Coyle Mr. Bryant and Ms. Alison Ms. Susan S. Crane Bigbee Mr. Americo Da Corte Mr. John Blakeley Mr. and Mrs. Allan Dabrow Mr. Jonathan F. Bloom Mr. and Mrs. Michael Mr. and Mrs. Michael D’Arcangelo Bogdonoff Mr. Gregory Pattison Darroch Mr. Lawrence Borger Mr. Richard Thomas Bowie, Sr. The Darroch Family Ms. Adah Davis Mrs. Shelley Boyce Mr. and Mrs. Michael P. Boyer Mr. and Mrs. Robert Deasey Ms. Andrea DelPopolo Mr. Richard and Ms. Marie Ms. Janet E. DeNicola Brennan Mr. and Mrs. Roger J. Dennis Ms. Anita Brodsky Ms. Barbara Helen Deptula The Bronstein Family Mr. and Mrs. Albert DeRitis Mr. David and Mrs. Caryn Ms. Helen Dezendorf Bross
28 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Mr. and Mrs. Brian R. DiDonato Mr. Felix DiFiore Mr. Ralph T. DiFulvio Ms. Sharon Drasher Mr. Howard J. DuPee Mr. Sean P. Elliott Ms. Tammi and Ms. Elaine Emrick The Essel Family Mr. Thomas and Mrs. Eleanor Everitt Terry and Susan Fadem The Fanning Family Mr. Paul Favorite Ms. Roberta B. Fiorito Mr. David Noll and Mrs. Eileen Fiorito-Noll Mr. Harris S. Fishman Ms. Vicky Fismire Mr. Frank Floczak III Mrs. Wanda E. Flowers Peacock Dr. and Mrs. Francis Forwood Mr. and Mrs. Joseph Frick Mr. Les Friedland Mrs. Donna Friedman Ms. Kimberly Fruit Duncan Gage Mr. Christopher and Ms. Leslie Gallagher Mr. Dennis A. Gallagher Mr. and Mrs. David Gerson The Gerstenbacher Family Mr. Mario and Ms. Pamela Giannini The Hon. Barbara and Mr. Alan Gilbert Ms. Belinda M. Gillern Mr. Joel D. Gilley Ms. Mary Ann Gindlesperger
Mr. and Mrs. Jonathan Gispan Mr. Brendan D. Giuseppe Mr. Marc Golaszewski Mr. Mark Goldstein Mr. Howard Goldstein, Esq. Mr. Kurt Daniel Graff Ms. Lisa Gray Mr. William J. Griest Mr. Michael Grobstein Mrs. Kelly L. Grogg Dr. Harry and Dr. Ilene Grossman Dr. Renu Gupta Mr. Roy Hafler Mr. Thomas R. Hall Ms. Brandi Handick Mr. and Mrs. Robert Hargesheimer Mr. William Harral, III Ms. Jessica Rose Harris Bob and Irene Haver Fund Mr. and Mrs. Paul Hawk Ms. Cynthia Hayes Mr. Paul D. Hendler Mr. Ted Robert Henke Ms. Mary Heran Mrs. Barbara J. Higgins Mr. Edward Hillis Mr. and Mrs. Tom Hinton Mr. Robert F. Hoffman Ms. Carolyn R. Holleran The Hollingsworth Family Dr. and Mrs. Bruce Hopper Ms. Donna L. Huber Ms. Maria A. Incudine Mr. Timothy T. Irvine Ms. Marianne Jackson Mr. Thomas and Ms. Lisa Jendrusch Mr. Anthony E. Jeremias Ms. Mimi Jigarjian
Ms. Patricia Maltese Dr. and Mrs. Francis Manlove The Marsh Family Mr. Bill Matthews Mr. Mike McDermott Mrs. Tracey McDevitt Hagan Mrs. Kelly McEllroy Mr. and Mrs. Richard McLaughlin Ms. Florence M. McLeary Mr. Richard McMahon Mr. and Mrs. John McMurtrie The McNamee Family Mrs. Jamie Yellen Miller Mr. William T. Monahan Mr. William H. Morgan Dr. Matthew Moront Ms. Rosemarie Greco and Ms. Anne Morrissey Mr. Joseph J. Mucerino Sr. Mr. Mark Allen Murphy Ms. Alice Murtos Mr. Michael and Dr. Monique Nappi Mr. Frank Striffling and Dr. Carla Narducci Pat and Ward Nelson Mr. and Mrs. Gary Novick Mr. James O’Brien Mr. and Mrs. Patrick O’Hare Mr. James and Mrs. Kate O’Neill Mr. Gary M. Parsons Mr. John Parsons Trena L. Pelham, MD Mrs. Michele Perez Mr. and Mrs. Jeff A. Petty Mr. and Mrs. Larry Pezzato Ms. Carolyn A. Piccone Anne and Jim Pickard Mr. Joseph Portmann Mr. Paul and Mrs. Joy Posoli Mr. Leo Pound Mr. and Mrs. David Pressel Mr. and Mrs. Marshall Prince Mr. and Mrs. Donald Pusey Mr. Lorin J. Randall
Mr. Alexander Rankin Dr. Eric and Mrs. Kim Ratner Raja Reddy Dr. Joanne M. Regina Mr. John Richmond Ms. Janet Riser Mr. Richard C. Rizzo Robin Roberts Mr. Frank Rossi Mr. Alfio Rossillo The Rubbo Family Mr. and Mrs. Robert Rubin Ms. Linda J. McAleer and Mr. Maitlon Russell Mr. and Ms. Ivan and Kathy Ruzic Frank C. Sabatino, Esq. Ms. Michelle L. Sabol Mr. Bret Sabold The Sachse Family Mr. Robert and Ms. Delores Sanderson Dr. Howard M. Eisenberg and Ms. Susan Sandler Mr. Randall H. Schenk Mrs. Samantha R. Scher Mr. Timothy Scheve Mr. and Mrs. Ronald Schneider Ms. Jodi Schwartz Mr. Thomas Louis Serano, Jr. Ms. Lisa Ann Shahade Ms. Dolores Shaw Mr. Michael and Ms. Michele Shea Mr. Peter Dean & Ms. Molly Shepard Mr. David Francis Skoloda Mr. G. Scott S. Smith Mr. Gregory L. Smith Mr. Richard Smith Mr. Hakan P. Sorman Mr. and Mrs. Robert Spires Ms. Michele Stafiniak Mr. Ray Stevens Jr. Ms. Elizabeth Stewart The Stielow Family
Golden Circle
Mr. and Mrs. Richard Josephs Mr. and Mrs. Matthew Kahn Mr. and Mrs. Larry Kane Mr. Nicholas J. Karamatsoukas Mr. and Mrs. Mitchell Kaye Mr. and Mrs. Robert E. Keith, Jr. Mr. Robert N. Kennedy Mr. Rich Kenney Mr. James and Ms. Jane Keyes David Khoury Mr. & Mrs. Robert Kimmel Mr. Dave Klayman Mrs. Debbie and Mr. Keith Kleinman Ms. Margaret Kleinschmidt Mr. and Mrs. Edward S. Knight Mr. and Mrs. Bradley Korman Larry and Korin Korman Linda G. Kraemer, PhD Mr. William Victor Kriebel Mr. Bradley A. Krouse Mr. Charles Kurtzman Mr. Elia and Mr. Wm. Lambert Mr. and Mrs. Charles Lambiase Mr. Stanley John Lesniak Ms. Kathy H. Levin Mrs. Kathryn C. Lieb The Lindsay Family Robin Liskoski-Piree Mr. David S. Loeb Jr. Mr. James C. Long Jr. Mr. John and Ms. Carole Longenderfer Mr. Edward Lopkin Karen and Herbert Lotman Mr. Robert Joseph Lucci Mrs. Helen T. Madeira The Mahan Family The Honorable Nicholas J. Maiale Mrs. Aditi Malik Ms. Beth A. Malikowski
Mr. Sean and Mrs. Carolyn Stonelake Dr. Christine Stoughton Mrs. Jacalyn M. Sullivan Mrs. Beth and Mr. Sherwood Summers Mr. and Mrs. John Talese Mr. Bruce E. Terker Ms. Anna M. Thackray Mr. John M. Thalheimer Mr. Robert I. Toll Ms. Karen B. Townsend Ms. Lisa Traviline Ms. Susan Tressider Ms. Christine J. Trux Mr. and Mrs. Stephen Tullman Ms. Karen Lee Turner Mr. Thomas Twardzik Mr. and Mrs. Renaat Van den Hooff Mr. Edward Varley Mr. and Mrs. Tinkham Veale Mr. Andrew J. Venezia Mr. Richard and Mrs. Johnette Venne Mr. Gerald P. Verbrugghe Mr. Tomas Vickerman Mrs. Judith M. von Seldeneck Dr. Charlie Wahl Mr. Sean P. Wajert Maureen Walsh Mr. Joyce and Ms. Joyce Watkinson The Weber Family Ms. Alexandra Anne Wells Ms. Gertrude M. Wentz Mrs. Diana Wister Mrs. Denise Yazdanfar Ms. Lynn H. Yeakel Ms. Jacquie O. Young Ms. Lisa P. Young Mrs. Katherine L. Youse Mr. Charles Zacney Ms. Juanita B. Ziccardi Mr. Edward and Mrs. Barbara Zinbarg
*This list reflects donors from the start of our campaign in October 2010 through June 2011. Our apologies for any inadvertent errors or omissions. TOLL FREE NUMBER 1 800 548 4611 29
Golden Circle
Thank you to the following organizations for joining the MS movement*: A&E Television Networks A.J. Catagnus, Inc. Acorda Therapeutics, Inc. A Margolis Realty Company Aqua Charitable Trust Actelion Clinical Research, Inc. Akin, Gump, Strauss, Hauer & Feld, LLP American Infrastructure Aquahab, LP AstraZeneca Pharmaceuticals LP Barclays Bank Delaware Barretta Tile and Stone, Inc. BASF Corporation Behringer Harvard Beneficial Bank Biddle Insurance Services, Inc. Bob Danzeisen, Inc. Bohler Engineering, Inc. Boot Camp Challenge Booz & Company BPG Properties, Ltd. Brandywine Realty Trust Bridgeport Speedway, LLC Bryn Mawr Hospital Calista Grand Campbell Soup Company Capital Blue Cross Carr & Duff, Inc. Catholic Health East CDI International Cenzio Corporation Cephalon, Inc. Children’s Place Christine McCafferty Community Emergency Fund Clarisse INC COBHAM Sensor Systems Conrail
Construction and General Laborer’s Union Corvette Club of Delaware Valley Covance Labs- North America Crayola Creative Financial Group Day & Zimmerman, Inc. Deloitte Services LP Devon Health Services, Inc. Drexel University Dugan, Brinkmann, Maginnis & Pace E-Finity Distributed Generation, LLC EMD Serono, Inc. Emerson Group Enterprise Ernst & Young LLP Essex Radez LLC Exelon Corporation Exley’s Landscape Service, Inc. Falkner Farms Firstrust Bank Fox Fothschild LLP Franklin Square Holdings, LP Fraternal Order of Police Lodge GenOn/Reliant Energy Genzyme Corporation Gerald B. Shreiber Foundation Gergo Plumbing & Heating, Inc. Guardian Harrah’s Operating Company Inc. I.B.E.W. Local Union 98 ICON Clinical Research Independence Blue Cross Indian Crest Junior High School Janney Montgomery Scott LLC John Tyler Enterprises, Inc/N.E.S.T. JPMorgan Chase Judah Incorporated Kessler Foundation K. Hawk Enterprises LLC Keystone Helicopter
Keystone Mercy Health Plan Klehr Harrison Harvey Branzburg LLP KPMG LLP La Salle University Lamb McErlane PC Langhorne Rod & Gun Club, Inc. Lehigh Valley Health Network Liberty Property Trust Life Cell Lockheed Martin Corporation Main Line Health Margaret G. Jacobs Charitable Trust MB Energy LLC Merck & Co., Inc. Met-Pro Corporation Metropolitan Life Foundation Montgomery McCracken Walker & Rhoads, LLP Morfood, Inc. Morgan Lewis & Bockius, LLP PA Power & Light Paoli Malvern Berwyn (PMB) Rotary Club Penn Home Care & Hospice Penn Therapy Associates, Inc. Pepper Hamilton LLP PNC Bank Pocono International Raceway PriceWaterhouseCoopers Professional Realty Advisors PRWT Services, Inc. Questcor Pharmaceuticals, Inc. Rancocas Anesthesiology, P.A. Ransome Cat Red Robin Regal Entertainment Group Ride-Away Handicap Equipment Corporation Ronin Capital, LLC Saint Joseph’s University SCS Commodities Corp. SevOne Shannon Outdoor Advertising, Inc.
Shore Memorial Hospital Siegal & Drossner, PC Signature Solar South Jersey Federal Credit Union St. Luke’s Hospital Stanley Stephens Co., Inc. Stradley Ronon Stevens & Young, LLP Subaru Suelle Corporation Tasty Baking Foundation TD Bank, N.A. Teva Neuroscience, Inc. The Air Products Foundation The Hartford The John F. Scarpa Foundation The Press of Atlantic City Traffic Planning & Design, Inc. United Healthcare Services, Inc. United Security Assurance United Stationers Supply Company University of Pennsylvania Health System University of Phoenix Urban Cableworks, Inc. VBW, Inc. VCI Mobility Verizon Foundation Videon Chrysler Dodge and Jeep Wells Fargo Bank, N.A. W.W. Smith Charitable Trust Zurich US Foundation
*This list reflects donors from the start of our campaign in October 2010 through June 2011. Our apologies for any inadvertent errors or omissions.
For more information on how you can be part of the Golden Circle, email kristina.mcgraw@nmss.org or call her at 1-800-548-4611. 30 JOIN THE MOVEMENT: nationalMSsociety.org/pae
PRIDE Quantam 610 power chair: About 3 years old, great condition. Seat raises, lowers and tilts back. Legs lift individually. Manuals included. Battery in good working order, charger included. Will need a van or large SUV to pick up. Asking $1,500 OBO. Located in Trooper, Pa. Call Stan at 610-539-6193. Jazzy 1122 power wheelchair: Used, in great condition. Disassembles to fit in car trunk. Battery, charger and manuals included. Asking $500 OBO. Located in Trooper, Pa. Call Stan at 610-539-6193. Set of crutches: Men’s, adjustable, only used once. FREE. Located in Devon, Pa. Call Susan at 610-964-8945 or 484-432-0998. Walker: Basic walker, no wheels, doesn’t fold. Used once. FREE. Located in Devon, Pa. Call Susan at 610-964-8945 or 484-432-0998. Shower chair: Used, about 9 years old, very good condition. Reclines all the way back, has adjustable legs, head rest. FREE. Located in Philadelphia. Call Maddie at 215-327-4398. Manual high-back wheelchair: Used, about 11 years old, very good condition. Reclines all the way back to almost a bed, has adjustable legs, head rest. FREE. Located in Philadelphia. Call Maddie at 215-327-4398. Enhance Vision’s Nemo Video Magnifier: 3 levels of magnification (4.5X, 6X, 9X), 6 viewing modes, 4-inch viewing screen, 12V battery charging unit. Very light 13 oz., easy to carry/use any time or place. Asking for best offer ($850 new). Located in Havertown, Pa. Call Harry at 610-446-8798.
Jazzy 1122 motorized wheelchair: 8 years old, has a headrest. Asking $500 OBO. Located in Cape May County, N.J. Call Jim at 609-263-3811.
CLASSIFIEDS
Classifieds
Accessible condo: One-story, completely wheelchair accessible. 2 BR, 2 baths, living room, dining room, eat-in-kitchen and terrace. Located off Route 70 in Cherry Hill, N.J. New carpet, new hardwood floors. Asking $90,000. Call Cheryl at 212-722-6093. Walker: Standard size, foldable with wheels. FREE. Located in Cherry Hill, N.J. Call Cheryl at 212-722-6093. Metal ramp: Portable, aluminum, freestanding. Heavy. Used, in excellent condition. Asking for best offer. Located in Cherry Hill, N.J. Call Cheryl at 212-722-6093. Power chair: About 5 years old, in good condition. Brand new battery. Has tape on the bottom seat, can easily be replaced. Comes with charger. FREE. Located in Spring City, Pa. Call John at 484-938-7888. Quickie S-525 power wheelchair: Excellent condition. Purple with black trim. Controls mounted for right-handed use. Joy Active gel cushion. Swing away footrests. Adjustable arm rests. Back rest collapses for easier transport. Adjustable speed settings and accel. up to 6 mph. Needs new battery. Also included is a Bruno wheelchair lift. Fits in a Toyota Sienna van but may also fit others. Manuals included. Must be able to transport from New Jersey. FREE. Call Lisa at 609-658-2224.
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Free Matter for the Blind or Handicapped
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Challenge Walk MS 2 days. 30 miles. October 22-23, 2011
Brandywine to Philadelphia
CHALLENGE WALK is the perfect way to embrace a personal challenge of spirit and strength, while making an important difference in the Challenge 2011 lives of people with MS. This two-day, 30-mile event, set in the beautiful Brandywine Valley and historic Philadelphia, takes participants through some of the most picturesque areas Pennsylvania has to offer and creates lasting memories.
TAKE THE CHALLENGE! walk4MS.org or call 1-800-883-WALK Because every movement you make and every dollar you raise supports the mission to create a world free of MS.