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2010 Issue 2

Greater Delaware Valley Chapter

A SHOT IN THE ARM?

Oral drugs will offer significant risks as well as benefits The MS community is on the verge of the most exciting research and clinical successes since the introduction of the first diseasemodifying therapies nearly two decades ago. With oral Gilenia (formerly fingolimod) poised for approval as soon as September and cladribine, another oral drug, close behind, many people living with MS are counting the days until taking their disease-modifying therapy is as simple as swallowing a pill.

INSIDE THIS ISSUE:

CONTINUED ON PG. 6

Spring Wellness Symposium Pages 8-9

Groundbreaking vision research Pages 10-11

How you celebrated MS Awareness Week Page 12-13

What health-care reform means for MS Page 24


UPCOMING EVENTS National Multiple Sclerosis Society Greater Delaware Valley Chapter 1-800-548-4611 1 Reed Street, #200 Philadelphia, PA 19147 Chairman Brian DiDonato Vice Chair Larry Kane President Tami Caesar

Vice President, Communications Kevin Moffitt MSConnection Editor Anne Krishnan

MS stops people from moving. The National MS Society exists to make sure it doesn’t. We do this through our home office and 50-state network of chapters by funding more MS research, providing more services to people with MS, offering more professional education and furthering more advocacy efforts than any other MS organization in the world. The Society is dedicated to achieving a world free of MS. Join the movement at nationalMSsociety.org. The National MS Society does not endorse products, services or manufacturers and assumes no liability for the use or contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published information and expert opinion, and does not constitute therapeutic recommendations or prescriptions. We recommend that all questions and information be discussed with a personal physician. ©2010 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 e-mail 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. July 17 – Family Bowling Days Cherry Hill, N.J. East Norriton, Pa. Allentown, Pa. July 24 & 25 – Bike MS: PA Dutch Ride Lancaster, Montgomery and Chester counties September 25 & 26 – Bike MS: City to Shore Ride, Cherry Hill to Ocean City COMPREHENSIVE CARE WEBINAR SERIES July 15 – An Overview Karen A. Mariner, MSS, MSCIR July 22 – The Rehabilitation Team Susan Golden, PT August 5 – Psycho-Social Support Shannon Stapleton, MSW August 12 – The MS Nurse and MS Center Suzanne C. Smeltzer, RN, EdD, FAAN August 19 – The MS Neurologist Thomas Leist, MD, PhD


IN BRIEF

STUDY DOUBTS ROLE FOR VIRUS IN MS Although studies have found a link between infection with the EpsteinBarr virus and a heightened risk of multiple sclerosis, new findings cast doubt on the theory that the virus helps cause the disease.

In an analysis of spinal fluid and autopsied brain tissue from people with MS, researchers found little evidence of Epstein-Barr genetic material in the samples. That absence, the researchers say, indicates that the virus is not directly involved in the MS disease process, as a number of other investigators propose.

STATINS CAN SLOW MS PROGRESSION The study examining the impact of statins on the progression of MS found a lower incidence of new brain lesions in patients taking the cholesterol-lowering drug in the early stages of the disease as compared with a placebo. The study’s primary endpoint, designed to evaluate MS progression in patients following

their first attack, was not met, but the researchers found over the 12-month course that 55% of participants did not develop new brain lesions when administered statins, compared with 28% of the placebo group.

with a variety of medical conditions. They found that, on average, patients who exercised regularly reported a 20% reduction in anxiety symptoms compared with those who did not exercise.

FDA APPROVES BOTOX TREATMENT

STAY INFORMED ON CCSVI

The FDA has approved Botox (onabotulinumtoxin A, Allergan, Inc.) as a treatment for muscle spasticity.

There’s been a lot in the news lately about CCSVI, a blood flow drainage abnormality in the brain and spinal cord that some studies indicate may be linked to the damage wrought by MS.

For many years some doctors have injected Botox directly into overactive muscles in people with MS-related spasticity who did not get relief from oral medications. While the oral medications continue to be the most effective strategy to manage generalized spasticity of the upper and lower limbs, Botox’s approval adds a welcome strategy and paves the way for its reimbursement by health insurers. Botox is also being tested in MS for its usefulness in the management of certain types of urinary symptoms.

EXERCISE CAN REDUCE ANXIETY Regular exercise can significantly reduce symptoms of anxiety, a new University of Georgia study shows. Researchers analyzed the results of 40 randomized clinical trials involving nearly 3,000 patients

The Society is pursuing this potential MS lead by undertaking the funding of new research in CCSVI (chronic cerebrospinal venous insufficiency) in MS and has invited investigators worldwide to apply for grants on the topic. We’re collaborating with the MS Society of Canada to convene an international panel of experts to conduct an accelerated review of proposals and working with our sister MS Societies around the world to assure that our research strategies are coordinated. New CCSVI research projects are expected to begin July 1, 2010. To stay up-to-date on the latest developments on CCSVI research, visit nationalMSsociety.org/ CCSVI.

TOLL FREE NUMBER 1 800 548 4611

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PRESIDENT’S MESSAGE

We all play a role in MS awareness As someone relatively new to the area, I continue to learn about Tami Caesar, the needs and President concerns of local people living with multiple sclerosis. Consequently, I want to thank everyone who has reached out to me over the past few months and especially those of you who took the time to attend the town hall meetings that took place in various locations in southeastern Pennsylvania and South Jersey. While there were many issues raised at these meetings, one message that came through loud and clear is that many of you feel that our chapter needs to have more of a presence in your local communities. It is an issue I will be making a priority during the next year. I am pleased to be able to say that part of that process has already started; we have already allotted funds for an awareness campaign designed to educate local residents about the disease and motivate them to get involved in our movement.

like-minded local organizations so we can have more of a sustained impact in cities and towns throughout our area. However, the need for the Society to tell its story works hand-in-hand with the need for you to tell yours. It may sound like a cliché, but the variability of MS means that every story matters, none more than yours. People fail to understand the true impact of the disease until they realize the true scope of its severity and unpredictability. Moreover, your personal experience of a life with MS is an essential ingredient in our efforts to get elected officials more involved on our cause. As voters, you hold the power to influence their behavior, and state and federal legislators truly want to hear from you. To find out more about how you can make our advocacy efforts a success, please call our office at 1-800-5484611 or visit the chapter’s website at nationalMSsociety.org/pae. Sincerely,

In addition, we will continue to seek ways to work more closely with our self-help groups, MS centers and other 4

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To the Chapter:

This is a blessing and gives me relief for the improved safety and independence I will have, especially while my husband is away. How excited I am to tell him the news when he arrives home. Just three years ago I was a professional woman. Then overnight, my status changed with a diagnosis of MS. As depressed as I was, I decided immediately it was my turn to give back and I called the MS Society offering to volunteer my services. I awake every day thankful to be where I am and accept my life with MS as a blessing. It is my mission to pass that acceptance on. Thank you sincerely to all that were involved, and now the modifications will begin soon! Pamela Trosino HomeABLE grant recipient To the Editor: I have multiple sclerosis and until recently I tried not to let it affect my everyday life. I was diagnosed in 1993. I am a nurse practitioner with a medical house call practice and often have to climb steps, negotiate around animals and jump over many cluttered items in patients’ homes.

LETTERS

Thank you for the time and consideration that went into my receiving the entire $15,985 I needed for my bathroom modification. When I received your call today, I could not stop shaking and had to sit and let it all sink in before I could carry on with my day.

Two years ago, I had a severe exacerbation requiring steroids. I started feeling sorry for myself and became depressed. I was tripping often and causing stress to my knee and hip joints. Finally, I snapped out of it and decided to return to the gym. I joined LA Fitness in Turnersville, N.J. and was talked into signing up with a trainer. I was reluctant but intimidated enough with weights to agree. I met Charles Billingham, who is a very caring young man who took the time to listen to my concerns. Our next meeting, he returned with a plan to work on muscle strengthening and balance. He had educated himself about MS and many issues associated with individuals living with MS. I was impressed. Today, I am confident that my mobility and improvement in walking is directly related to Mr. Billingham. We continue to meet on a weekly basis and each time he has researched additional training techniques which I can also do at home. He always offers encouragement and constantly pushes me to achieve the ultimate goal, improving my walking. I am still seeing homebound patients and still negotiating with steps, animals and sheer clutter, however I feel stronger and I am tripping less. I would like to introduce Mr. Billingham to MSConnection readers and have him recognized as an outstanding individual who took the time to research and develop an exercise and muscle strengthening plan geared specifically to an individual with MS. Sincerely, Meshell Mansor Williamstown, N.J. TOLL FREE NUMBER 1 800 548 4611

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ORAL DRUGS

CONTINUED FROM PG. 1 “Patients have been asking for the past several years when there’s going to be an oral drug,” said Dr. Clyde Markowitz, director of the MS Center at the Hospital of the University of Pennsylvania. “There are going to be a lot of people who are interested.” But he and other MS specialists say the oral therapies coming down the pike are not going to be a panacea for people living with MS.

Donald Barone, DO, director of the MS Center of South Jersey

“I don’t think the emergence of oral drugs means it’s a slam dunk and everybody’s going to be on an oral agent,” said Dr. Donald Barone, director of the MS Center of South Jersey.

There’s no doubt that both drugs have shown promising results in terms of efficacy by reducing relapse rates and potentially slowing the progression of disability. Plus, the convenience of taking an oral drug should increase the number of people taking disease-modifying therapies, which experts say is the best way to combat future disease activity. But the drugs’ safety is a major concern, Barone and other neurologists say. Both Gilenia and cladribine come with potentially dangerous side effects. Adverse effects seen in Gilenia’s clinical trials included herpes and other infections, alterations in liver function and skin cancer. 6

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The company applied for approval of the lower of two doses tested, which was better tolerated.

“Just because they’re oral doesn’t mean they’re perfectly safe.”

Cladribine also was associated with herpes ~ Dr. Andrew Goodman infection, lowered white blood cell counts and a few cancers. Researchers said the number of malignancies was so small that they couldn’t determine whether cladribine was to blame. UMDNJ was one of the clinical trial sites for cladribine, and Barone has seen firsthand that the drug, a chemotherapy agent, has pluses and minuses, he said. In particular, he’s concerned about its effects on young women’s fertility. The safety data is enough to make doctors think twice before prescribing either therapy, if they’re approved. “Just as we carefully weigh the potential risk versus the benefits of Tysabri, that should be done for each oral drug as we hopefully get them in the coming years,” said Dr. Andrew Goodman, chief of the Multiple Sclerosis Center at the University of Rochester Medical Center. “Just because they’re oral doesn’t mean they’re perfectly safe.” What’s more, doctors aren’t inclined to change a patient’s course of treatment if they are stable on another injected


“There are going to be concerns about taking people who are doing very well and putting them on an oral agent that may not be able to control disease for that particular patient and that carries a different risk profile,” Dr. Markowitz said. Once they’re informed about the safety risks, patients may decide to stay the course, as well. Mary Roesch, 60, of Egg Harbor Township, says she has so much scar tissue in her thighs that sometimes when she inserts the needle and pushes the plunger, the Avonex runs back out. “Years and years, I’ve been sticking myself. It’s always shot day,” she said. But safety is of paramount importance to her. “Even though I hate doing the shots, I wouldn’t even think of switching if it had safety issues,” she said. While safety concerns mean the first generation of oral diseasemodifying therapies might be slow to take hold, doctors are optimistic about some that are still in development, such as laquinimod or BG-12. “Their efficacy profiles may not be as robust, but their safety profiles look a lot better,” Dr. Barone said.

ORAL DRUGS MAKE PROGRESS

ORAL DRUGS

disease-modifying therapy.

Oral drugs for MS are getting even closer to the doctor’s office, with one, Ampyra, now available by prescription. HERE’S THE SCOOP: • An FDA panel has recommended approval of Gilenia (formerly called FTY720 or fingolimod) as a first-line treatment for MS, meaning patients would be eligible to take it without trying an alternative therapy first. If approved, it would be the first oral disease-modifying therapy for MS. The agency is expected to make a final decision in September 2010. Read the studies thus far at nationalMSsociety.org/gilenia • With positive results in the latest studies, Cladribine, another oral disease-modifying drug, is in the process of applying for marketing approval. Visit nationalMSsociety.org/news and type “cladribine” in the search field to learn more. • The FDA approved Ampyra (dalfampridine, Acorda Therapeutics) in January for its ability to improve walking in people with MS. People with MS and their health care providers can call 888-881-1918 for information on Ampyra, including patient assistance programs and insurance coverage. (The drug is costly: wholesale price is estimated to be $1,056 for a 30-day supply.) Watch Dr. Patricia Coyle talk about what Amypra does, how it works and possible side effects at nationalMSsociety.org/ampyra. TOLL FREE NUMBER 1 800 548 4611

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WELLNESS

Symposium teaches how to move beyond MS

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ore than 200 people came out to the Greater Delaware Valley Chapter’s first-ever wellness symposium and left with a “can do” attitude. Patricia Kennedy of Can Do MS gave a rousing presentation about what it means to live well and provided many steps you can take to achieve personal wellness. “Even though you have MS, it’s not an excuse not to feel good,” she said.

Vera Jones-Wiokins

Vera Jones-Wiokins of Deptford found the presentation especially useful. “It confirmed a

lot of what I’m doing,” she said, “and made me think about a lot of things I need to work on.” Attendees also learned how to empower themselves with exercise; how simple diet changes and a spiritual journey can lead to wellness; and how to get active for MS. Jean Nickel of Rockledge, Pa., has been to many programs, “and this was top of the line,” she said. “The three things that they highlighted were most important – there wasn’t any junk. This spoke to all levels of the disease.” To listen to podcast recordings of many of the presentations, visit MSlearn.org or call 1-800-548-4611 to request a CD.

SIGN UP TODAY FOR OUR UPCOMING WELLNESS CLASSES: Gentle Yoga, Voorhees William G. Rohrer Center for HealthFitness Sundays, 11 a.m-12:30 p.m. Begins July 11

Gentle Yoga, Philadelphia The Aquatic and Fitness Center Mondays, 11 a.m.-12:30 p.m.  Begins July 12

REGISTER at calendarMS.org or by calling 1-800-FIGHT-MS (press option 1) Monday through Friday, 9 a.m. to 7 p.m. 8

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Registration fee is $24 for an eight-week session.


{ GET SPIRITUAL }

n Try to exercise for at least 10 minutes every day. (It’s okay to miss a day every now and then, but it shouldn’t become a habit)

n Intend to do something spiritual every day. It can be praying, meditating or anything else that is spiritual to you

n Never exercise to a point of fatigue, or you may need days of recovery before you can exercise again

n Practice gratitude. Make a list of all the things you’re grateful for on a regular basis. It could be something as simple as getting out of bed or having food to eat for breakfast. Practicing gratitude will lift your spirits and help you forget about your problems

n Exercise doesn’t have to mean going to the gym. If lifting weights and running on a treadmill aren’t for you, find something active that you enjoy doing like riding a bike, swimming or dancing. Just keep moving n Avoid overheating by purchasing products that keep you cool like cooling vests or cooling collars and drinking plenty of water n Don’t focus on what you can’t do; focus on what you can do. If you can’t keep your balance while standing, do seated exercises

WELLNESS

{ EXERCISE }

{ EAT WELL } n Pay attention to why you’re eating. Are you really hungry or are you bored or depressed? Only eat when you’re actually hungry n Be a savvy snacker. Try to stay within a couple hundred calories and include protein, fiber and complex carbs where you can. Avoid sugary snacks n Stock for success. Keep healthy food in your pantry, freezer and refrigerator

n Learn how to grieve well. Bottling up emotions tends to make people explode when it gets to be too much

n Increase your fiber intake to stay regular and increase your energy

n Focus on breathing. When you spend five minutes focusing on breathing in and breathing out, it can help take your mind off of your worries and leave you feeling calm and content

n Avoid bad fats (trans fats and saturated fats). Instead, try incorporating monounsaturated and polyunsaturated fats (vegetable oils, seeds, walnuts, etc.) that offer health benefits

n Find the opportunity in crisis. When crisis hits, there is an opportunity to find a deeper meaning in your life. You may not know it immediately, but in time it will be shown to you TOLL FREE NUMBER 1 800 548 4611

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RESEARCH

Penn lab is epicenter for groundbreaking vision research As a neuro-ophthalmology fellow at the Hospital of the University of Pennsylvania, Dr. Laura Balcer and her mentor, Dr. Steven Galetta, observed that while patients with MS complained of various problems with their vision, most still scored 20/20 on the vision charts.

Laura Balcer, MD, chief of Penn’s MS Division in the Department of Neurology

Thus began the Penn team’s commitment to the study of vision in MS and their groundbreaking work in neuro-ophthalmology. Over the past 15 years, Balcer, now chief of Penn’s MS Division in the Department of Neurology, has pioneered tools that are revolutionizing the way scientists can measure the effectiveness of MS drugs in clinical trials and in the exam room.

As many as 50% of people living with MS have visual symptoms at the time of MS diagnosis, and up to 80% will experience difficulties with vision during the course of MS, Balcer explained at a recent research update. 10 JOIN THE MOVEMENT: nationalMSsociety.org/pae

The high prevalence of vision problems caught the eye of scientists at the National MS Society as well. In 1997, they put out a call for researchers to develop new ways to objectively measure the symptoms and health of people living with MS, with a particular emphasis on trying to detect the effects of MS therapies. Balcer’s questions about measuring vision loss, combined with the Society’s call to action, drove her to begin searching for answers. She and her team at Penn first discovered that a low-contrast vision chart (light gray letters on a white background) captured the often subtle symptoms that patients noticed, including difficulty recognizing faces, seeing well in bright sunlight, driving and other skills. Balcer’s research with MS fellow and trainee, Dr. Gregory Wu, now a faculty member at Washington University in St. Louis, also showed that lower scores on the low-contrast chart were correlated with a greater number of lesions on brain MRI. While MRI is an indispensable tool for diagnosing MS and for measuring structure in the nervous system, Balcer’s group recognized a need for more direct ways of examining the visual pathway. She began looking into different ways of imaging the eye that might help her evaluate some of the biological structures related to


MS, and she quickly became a leader in the field of optical coherence tomography, or OCT, a technology that images the retina with nearly the clarity of looking through a microscope. Balcer and her colleagues at Penn, Johns Hopkins and the University of Texas Southwestern in Dallas have found that thinning of the retinal nerve fiber layer (the layer of nerve cables, or axons, that form the optic nerve) correlates well with visual function, both at a single time point and over time. Retinal nerve fiber layer axonal loss is also linked to brain atrophy, as demonstrated by MS vision research collaborator Dr. Peter Calabresi at the Johns Hopkins University. “The eye is the ideal model in MS,” Balcer has said. “Nowhere else in the central nervous system can we make such a direct correlation of structure and function in MS.” Balcer’s long-term research has shown that for many people with MS, the retinal nerve fiber layer shows thinning even without acute episodes of optic neuritis, and even in patients taking a disease-modifying therapy. “This shows that we do need neuroprotective treatments, and that we need to develop and continue to develop new ways to keep axons and nerve cells in MS from getting damaged,” she said. Today, eye imaging (OCT) and low-contrast vision charts have been incorporated into most MS clinical trials as experimental outcome measures. Balcer’s team also continues to examine whether vision can be used to detect different types of MS, and could potentially be used to capture the effects of new treatments on the horizon that may improve function for patients. TOLL FREE NUMBER 1 800 548 4611 11


AWARENESS

You did it! MS Awareness Week was a resounding success throughout the region. Thanks so much to everyone who took the initiative to raise awareness in their own community. Following are just a few examples of local people who made their mark against MS during the week.

n John and Lisa Hashem raised awareness and $310 by posting a sign at their bar and restaurant, “The Lounge,” and collecting donations. A regular patron with MS educated other customers, and John shared information and resources with another patron whose brother was recently diagnosed.

n Penny Sue Drayer’s 13-year-old daughter asked the other students in her class at Barratt Middle School to wear orange in support of her mom. The head teacher waived the school’s uniform requirement and sent home a letter to provide more information about MS. There was great participation among the kids in the class.

n Mary Roesch contacted her city manager and asked that Egg Harbor City declare the week as MS Awareness Week. The council presented Roesch with a plaque and allowed her to speak at its meeting. She also wrote letters to the editor at newspapers throughout her area and distributed flyers to her hairdresser, dentist and barber.

“I was so surprised by all of this,” Drayer said. “It brought tears to my eyes that my daughter, only 13, would go out of her way and ask everyone to do this. She really has a true heart of gold and I thank God for her every day. She is my motivation.” n The members of the JEVS Supports for Independence Walk MS team, led by Samantha Pytleski, celebrated by turning their workplace orange. 12 JOIN THE MOVEMENT: nationalMSsociety.org/pae

n The MS READaTHON students at Taunton Forge Elementary School in Medford, N.J. held their own MS Awareness Week activities, including contests, flyers and a bake sale with all orange baked goods, including cookies with the National MS Society logo. They also walked in Walk MS. n Angie Selzer-Moorhead’s 7-year-old daughter sent out fundraising letters to all her friends and family during the week to raise money for Team Egan, which takes part in Walk MS in honor of her cousin.


n Mary Morgan-Horrocks recruited Facebook friends to change their profile pictures to the MS Awareness Week logo. n Carol Moran Nock called WOGL to make a lunch-hour dedication mentioning MS Awareness Week. The Greater Delaware Valley Chapter raised MS awareness in March by: n Holding a wheelchair accessibility tour at the State House in Trenton. Thanks so much to Chuck and Mickie Bassman for helping lead the tour. (Learn more on pages 26-27.) n Appearing on CBS3/CW Philly’s morning news; in the Philadelphia Inquirer; and on radio stations WYSP, WOGL, WAEB, WZZO, WSAN and Ben FM. n Sending staff and volunteer leaders to the Public Policy Conference in Washington, D.C. (Learn more on pages 24-25.) n Holding the Spring Wellness Symposium to educate local people about wellness approaches to living with MS (Learn more on pages 8-9.)

Counseling service fosters peace of mind

SERVICES

n Sherry Leonhardt’s Walk MS team, The Meadowood Walkers, held a pretzel sale, raising $213.50 in an hour. Learn more about Sherry’s story in a video at walk4MS.org.

MS can have a profound effect on the mental and physical health of people living with the disease and those who care about them. The Greater Delaware Valley Chapter’s counseling service helps address this concern by providing financial assistance for up to 12 counseling sessions for people living with MS, as well as their partners, family members and caregivers. If you have health insurance, we pay the copayment for your visits. We pay for the entire cost of the session for clients without health insurance. Several volunteer counselors also provide telephone counseling sessions for free, and the chapter is collaborating with the Council for Relationships for additional counseling resources. The chapter provides an overview of MS for all counselors and other health-care providers who serve our clients living with MS. “There are so many people out there in the allied health professions with no idea of how MS affects a person, their family, their lifestyle,” said services manager Melissa Bruno. “We try to make sure everyone we work with has an understanding of those issues and can help people address them as effectively as possible.” To take advantage of this service, or if you’re a counselor who would like to get involved, please contact Melissa Bruno at 1-800-5484611 or melissa.bruno@pae.nmss.org.

TOLL FREE NUMBER 1 800 548 4611 13


CHAMPIONS

GIVE THE RIDE MEANING FOR A BIKE MS CYCLIST Many Bike MS cyclists participate in the City to Shore and PA Dutch rides for the challenge or the camaraderie, and have little or no connection with MS. We help cyclists learn more about MS and put a face on our mission through the Bike MS Champions program. This program, which pairs people living with MS and cyclists, was revamped in 2009 with a new Web page featuring profiles of each of our champions and details on the unique identifiers they want cyclists to wear or carry in their honor. Cyclists select a champion from the page or we choose someone for them. Check it out at http://main. nationalmssociety.org/BikeMSChampions.

living with MS is paired with several cyclists, and we ask that you correspond with them at least once via e-mail or mail. Further communication is up to you. This is a wonderful opportunity to get more involved in the fundraising events that support critical local programs, services and research and personally thank the people whose hard work contributes to our success.

2009 PA Dutch Bike MS champion

We need your help to expand our program and reach 20 champions with MS this year. The time commitment is minimal; each person

The rides will be here before we know it, so don’t delay – contact Lara Estomin at 1-800-548-4611 or lara.estomin@pae. nmss.org to volunteer as a champion today.

We want your skills and talents

We have started creating new opportunities that allow volunteers to share their skills and talents and grow within our organization, and you’ll see the number of options blossom over the next year.

Our chapter is developing a new approach to volunteerism to mobilize the thousands of people locally – like you – who want to take a hands-on approach to creating a world free of MS.

For instance, our communications department recently recruited an Emmy-winning filmmaker to create four videos about how Walk MS makes a difference to people living with MS. You can watch Joey, Shannon, Sherry and Lakshmi’s stories at youtube.com/user/nmsspae.

14 JOIN THE MOVEMENT: nationalMSsociety.org/pae

But before we fully implement our strategy, we need to collect information about our volunteers’ skills and talents. Visit


The Greater Delaware Valley Chapter is pleased to present our first-annual MS Service Days this summer and fall. If you are living with MS and need a helping hand around the house, MS Service Day volunteers will be happy to help. These first days of service will take place near Hammonton, N.J. over the summer and near West Chester, Pa. in October. Volunteers from our chapter will divide into teams and complete projects for people living with MS in these cities and nearby communities. In West Chester, we’ll be offering three hours of assistance with yard work, including raking, weeding, pruning, clipping, planting flowers and bushes, painting and cleaning outdoor furniture.

In Hammonton, our volunteers will help with chores such as moving furniture, appliance cleaning, handyman chores/ small repairs, laundry, organizing closets, washing windows, painting, running errands, yard work and general housekeeping.

VOLUNTEERS

What a difference a day makes!

You can fill out an application on the Web at http://main. nationalMSsociety.org/servicedays. To learn more, request an application by mail or volunteer, contact Lara Estomin at 1-800-548-4611 or lara.estomin@ pae.nmss.org. For everyone’s protection, background checks will be performed on all participants and volunteers. Applications to participate in MS Service Day must be received by the end of June.

www.surveymonkey.com/s/ GDVvolunteersurvey today to complete our new volunteer survey. This information will be used to shape new volunteer positions and, potentially, recruit people to fill the jobs. And sign up today for our new volunteer e-newsletter, which offers volunteer tips and ways people can get involved throughout our organization. Just enter your e-mail address in the yellow box in the middle of our chapter’s home page, nationalMSsociety.org/pae. Want to learn more? Contact Kathie Cronk at 1-800-548-4611 or kathie.cronk@pae. nmss.org.

One of the videos that Tim Walton, Emmywinning filmaker, created for Walk MS. Watch them all at youtube.com/user/ nmsspae. TOLL FREE NUMBER 1 800 548 4611 15


FUNDRAISING

Women Against MS Luncheon raises nearly $100,000 to help people living with MS Rosemarie B. Greco pays tribute to her sister at eighth-annual event

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ore than 400 women and men from throughout the Greater Delaware Valley gathered at the Crystal Tea Room on May 19 to celebrate the sisterhood of women living with – and affected by – multiple sclerosis. Rosemarie B. Greco, the former director of the Pennsylvania Governor’s Office of Health Care Reform, was the keynote speaker for the Women Against MS Luncheon. She presented the Woman of Spirit Award to her sister, Phyllis D. Greco, who’s living with MS. “The link of sisterhood ties us together, and to all of you,” said Molly Shepard, a trustee for the Greater Delaware Valley Chapter CBS3’s Kathy Orr of the National speaking at the 2010 MS Society. Her Women Against MS sister Amy is living Luncheon with MS. “Our sisterhood here in this room continues to fuel the powerful movement to create a world free of MS.” The event raised a tremendous $96,500 to

16 JOIN THE MOVEMENT: nationalMSsociety.org/pae

create a world Molly D. Shepard, Phyllis D. free of MS, Greco and Rosemarie B. Greco yet fell just short of its $100,000 goal. Even for women who aren’t affected by this disease, this cause matters. There are four women living with MS for every man who is diagnosed. The money raised by WAMS is critical for providing research and local programs and services to benefit 13,000 people living with MS in the Greater Delaware Valley. The National MS Society welcomes credit card donations by phone at 1-800-548-4611, or donors can mail a check to the chapter office at National MS Society, attn: WAMS, 1 Reed St., Suite 200, Philadelphia, PA 19147. The Women Against MS Luncheon is supported by platinum sponsors Keystone Mercy Health Plan and sanofi aventis and gold sponsor Fox Rothschild. We will continue the momentum generated by this event at the first-annual WAMS reception this fall. Please contact Kristina Fransel at 1-800-548-4611 or kristina.fransel@pae. nmss.org to help plan the reception.


There are many ways that you can make a significant gift today or plan a gift for the future and join the movement to create a world free of MS. Give a gift today Give online. Set up a tribute or memorial fund to honor someone special; become a monthly sustaining donor; give a one-time gift using your credit card. Your gifts will support local and/or national programs and services and ensure that MS research continues to develop better treatments to stop the disease process. Click the “Donate” button on the left at nationalMSsociety.org/pae. Mail your gift. Your check or stock gift may go to the general fund or be restricted to the research or the service program of your choice. Restrict your Golden Circle membership or campaign gift by indicating your preferences when mailing it to our chapter. Gifts of securities are always welcome; step-by-step instructions for stock transfers are available at nationalMSsociety.org/donatestock. Plan a gift for the future Bequests. You can create a legacy by naming the Society in your will, charitable remainder trust, charitable lead trust or living trust. Your

GIVING

LET US COUNT THE WAYS

bequest will provide important support to the Society in the future and may be exempt from federal estate taxes. For complete estate and gift planning resources, visit nationalMSsociety. org, click on “Donate” and then “Planned Giving.” Charitable gift annuity. Provide lifetime income for yourself or someone you love while supporting the Society’s mission with a charitable gift annuity. Learn how you can contract to transfer assets to the Society in exchange for payments for life to one or two annuitants at nationalMSsociety.org/ annuities. Life insurance gifts. Designating the National MS Society as owner and beneficiary of an insurance policy is an easy way to make a gift that costs you little while creating your legacy of support to the Society.

Want to talk to a person? For more information on any of these options or additional gift opportunities, please call our national gift planning specialist Carrie Radant at 1-800-923-7727 or e-mail her at giftplanning@nmss.org.

TOLL FREE NUMBER 1 800 548 4611 17


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, access to national leaders and much more.

Mr. and Mrs. Timothy Abbott Ms. Margaret Abrams Dr. and Mrs. Todd J. Albert Mr. Stephen A. Albertini Stan and Lisa Altman Ms. Molly Andolina Mr. Michael E. Angelina Mr. Russell Arthur Ms. Stacey V. Asbell Mr. John Babb Ms. Valli Baldassano and Mr. Lee Bellapigna Mrs. Marion Banks Dr. and Mrs. Allen H. Bar Mr. Christopher J. Barnes Mr. and Mrs. C. Minor Barringer Mr. Robert W. Barth, Jr. Mr. and Mrs. Clyde Beers Jay and Susan Benner Mr. Steven D. Berkley Mrs. Lynne Berman Mr. Michael J. Betsch Dr. Lynda A. Bideau Mrs. Leah K. Blumenthal Mr. and Mrs. Michael A. Bogdonoff Mr. David Booth Mr. Richard T. Bowie, Sr. Ms. Shelley L. Boyce Mr. Ric C. Boyd Mr. and Mrs. Michael P. Boyer

Ms. Maureen N. Bradford Mr. Richard A. Bradley Mr. David Brash Ms. Jennifer M. Breen Mrs. Maureen Broadbent Mr. Robert M. Bronstein Mr. David Bross Mrs. Caryn H. Bross Dr. Melissa M. Brown Mrs. Minerva Brownstein Mr. Howard B. Brownstein Mrs. Rosemarie J. Buck Mr. William Bujalos Ms. Heather M. Burkart Mrs. Eileen M. Bushelow Mr. Anthony J. Caine Mr. Daniel Calabrese Mrs. Megan Caldarelli Mr. James W. Carrigan Ms. Patti Cassidy Mr. Louis Castiglioni Mr. Greg Cauley Mr. Stephen W. Chamberlin Mr. Joseph P. Cherone Ms. Trisha M. Cherry Ms. Lois Chilleo Mr. Arthur J. Christian Mr. Thomas E. Claugus Mr. Bradford L. Clayman Mr. Thomas M. Clifford Mr. Brendan M. Cody Abbi L. Cohen, Esq.

Sylvan and Barbara Cohen Dr. Linda S. Cohen Mr. and Mrs. Nathaniel R. Cohen Mr. Lou E. Collazzo, III Ms. Georgeanne L. Conley Mr. E.J. Connell Ms. Vivian P. Corradino Mrs. Karin Costello Mrs. Patricia V. Counsellor Ms. Colleen M. Craven Mr. and Mrs. Richard J. Cureton Mr. Joseph S. Czajkowski Mr. Americo Da Corte Mr. Robert J. Daley, Jr. Michael and Patricia D’Arcangelo Mr. James P. Darroch Dr. Daniel K. Davidian, Sr. Mr. and Mrs. Robert M. Deasey Ms. Andrea DelPopolo Mr. Paul R. Denham Mr. and Mrs. Roger J. Dennis Mr. Russell C. Deyo Ms. Helen F. Dezendorf Mr. and Mrs. Brian R. DiDonato Mrs. Rosemary Diederich Mr. Felix DiFiore Mr. Jack L. Donovan Mr. and Mrs. Kenneth L. Duff Mr. Howard J. DuPee

18 JOIN THE MOVEMENT: nationalMSsociety.org/pae

Dr. Howard M. Eisenberg Mrs. Albert Eizen Mr. Sean P. Elliott Ms. Elaine Emrick Mr. C. A. Engle Mr. John G. Essel Terry and Susan Fadem Mr. Jude M. Fanning Mr. Paul D. Favorite Ms. Christine Favorite Ms. Trish L. Feil Mr. Gerald E. Finsen, Jr. Mrs. Eileen S. FioritoNoll Ms. Vicky Fismire Mr. Brett Forrest Mrs. Donna Friedman Mr. Matthew Friel Mr. Dennis A. Gallagher Dr. Christopher J. Gallagher Ms. Kate D. Gallivan Mr. Matthew Geiger David and Donna Gerson Ms. Pamela M. Giannini Ms. Pamela S. Gifford The Hon. Barbara and Mr. Alan Gilbert Mr. Joel D. Gilley Ms. Mary Ann Gindlesperger Mr. and Mrs. Jonathan Gispan Dr. Michael A. Glass Mr. Mark Goldstein Mr. and Mrs. Howard Goldstein Ms. Kristen Goodman Gregory G. Gosfield, Esq. Mr. Kurt D. Graff

Mr. Theodore J. Greene Kent and Lori Griswold Dr. and Mrs. Marvin H. Grody Ms. Kelly Grogg Laura Grossi-Tyson, Esq. Dr. Harry D. Grossman Ms. Joan J. Haag Mr. Thomas R. Hall Ms. Brandi Handick Ms. Jessica R. Harris Ian and Caryn Harris Mr. and Mrs. Preston F. Harrison Mr. Robert W. Haver Ms. Cynthia A. Hayes Mr. Pierre D. Hayward Mr. Jeremy D. Hedberg Mr. Michael Heinz Ms. Gail A. Henderson Mr. Paul D. Hendler Ms. Dana R. Hendrickson Ms. Mary D. Heran Mrs. Barbara J. Higgins Ms. Karen Hinckley Ms. Charleen L. Hinton Mr. J. Robert R. Hollinger Mr. Richard V. Holmes Dr. and Mrs. Bruce D. Hopper Kris Hunsicker Mr. Anthony E. Jeremias Ms. Mimi Jigarjian Mr. Scott D. Johnson Ms. Latisha Y. Jones Mr. and Mrs. Richard M. Josephs Mr. Nicholas J. Karamatsoukas Ms. Nanette A. Kardaszeski


Mrs. Jennifer M. McConnell Mr. Sean McDermott Mrs. Tina McLaughlin Mrs. Kathleen R. McNamee Mr. and Mrs. Robert L. McNeil, Jr. Mr. Norman Melnick Mrs. Deborah L. Melnick- Coppola Mr. Matthew J. Miades Mrs. Jamie Y. Miller Mr. and Mrs. Andrew Milstein Mr. and Mrs. William T. Monahan Mr. Charles J. Montufar Mr. William H. Morgan Mr. Joseph J. Mucerino, Sr. Ms. Caren Muller Mr. Andreas Muno Ms. Courtney A. Murphy Mr. Mark Murphy Ms. Lisa M. Murray Mr. and Mrs. James L. Murray Ms. Alice Murtos Mr. Leonard W. Nadel Mrs. Julie NataleFenton Mr. Tom Nguyen Mr. David T. Noll Mrs. Margaret M. Null Mr. James W. O’Brien Ms. Marcia I. Page Mr. Angelo M. Papalia Mr. Charles R. Paschke Malay Patel Mr. and Mrs. Jeff A. Petty Mr. Larry Pezzato Ms. Anne Pickard Mrs. Mary E. Pietruszynski Mr. Christopher M. Pilla

Ms. Penny J. Pistilli Mr. John Plumer Mrs. Joy M. Posoli Mr. Leo Pound Ms. Kathleen A. Powell Ms. Jacquelyn M. Powers Ms. Constance Prince Donald and Deborah Pusey Mr. John A. Rade, II Mr. W. S. Radgowski Mr. Alexander Rankin Mr. James L. Rankin Dr. Joanne M. Regina Mr. Stewart M. Reid Mr. John Richmond Mr. and Mrs. Roger Rinker Mr. Howard W. Robin Mrs. Lisa Rocktashel, RN Mr. Walt Rosewitski Mr. James A. Rubbo Mr. and Mrs. Robert M. Rubin Ms. Jennifer K. Ruddock How Mr. Dean W. Rutley Ms. Kathy Ruzic Mr. Ivan Ruzic Frank C. Sabatino, Esq. Mr. Brian Sanders Mr. Tim Scheve Mr. G.S. Schneyer Mr. William A. Schreyer Mr. Neil Schwartz Mr. John H. Scott Dr. Louise F. Scura Mr. Robert W. Seckinger Mr. and Mrs. Jack Segal Mr. Kenneth E. Shaw Ms. Molly D. Shepard and Mr. Peter Dean Mr. John T. Shive

Mr. and Mrs. Arthur Shoyer Mr. John H. Simensen Ms. Ellen Sims Mr. David F. Skoloda Ms. Leslie F. Smith Mr. Al Smith Mr. Gregory L. Smith Mr. Edward J. Solomon Mr. Hakan P. Sorman Mr. Charles R. Spano Mrs. Kathy Spinelli Mr. and Mrs. Robert V. Spires Mrs. Justine Staub Mr. Ray Stevens, Jr. Mrs. Elizabeth A. Stewart Mr. Allen Stichter Dr. Christine M. Stoughton Mrs. Jacalyn M. Sullivan Mr. T. Andrew Sullivan, Jr. Mr. Stephen B. Switzky Mrs. Lisa Talese Ms. Janet E. Tarbox Mr. Bruce E. Terker Mr. Jeffrey M. Tertel Mr. Steven Testan Mr. Philip G. Trachtenberg Ms. Lisa Traviline Mr. Arthur M. Troccoli, Jr. Ms. Karen L. Turner Mr. John W. Tutko Mr. Thomas Twardzik Ms. Jennifer Twomey Mr. and Mrs. Renaat Van den Hooff Mr. Kevin Van Drunen Mr. Edward Varley Mr. Jeff H. Vaughan

Mr. Andrew Venezia Mr. and Mrs. Gerald Verbrugghe Ms. Jaclyn Verrastro Mr. Thom Verrastro, Jr. Mr. Charles T. Verrill Ms. Lisa Vicari Mr. Tomas Vickerman Mrs. Mona Vitalone Mr. John A. Volpe Col (R). and Mrs. Michael L. Warner Mr. Troy S. Watkinson Mr. James V. Weber Dr. Christopher Weidig The Rev. and Mrs. William Wightman Mr. and Mrs. Ather Williams, Jr. Mr. Tim Williamson Mr. Charles Witmer Mrs. Katherine L. Youse Ms. Juanita Ziccardi Mr. Edward Zinbarg Mr. Benjamin R. Zuckerman

GOLDEN CIRCLE

Rhonda Karp, EdD and Dr. Stephen Kay Mr. George W. Karr Mr. Sol Katz Mr. Gordon Kautz, II Mrs. Lyn Kaye Mr. and Mrs. Robert E. Keith Mr. and Mrs. Steve Kennedy Ms. Margaret Kleinschmidt Dr. Sebastian Knowlton Mr. and Mrs. Bradley Korman Eric Kraeutler, Esq. Mr. William V. Kriebel Mr. and Mrs. Bradley A. Krouse Mr. Charles Kurtzman Mr. Wm. H. Lambert Mr. Charles A. Lambiase Ms. Margie LefcoeMcClennen Mr. Stanley J. Lesniak Mr. Anthony P. Librizzi Miss Tara L. Lindsay Mrs. Mary C. Loew Mr. James C. Long, Jr. Mr. John E. Longenerfer Mr. Edward Lopkin Mrs. Hillerie B. Maddox Mrs. Helen Madeira Mr. John Magagna Mr. Andy D. Mahan Nicholas J. Maiale, Esq. Mr. Vivek Malhotra Dr. and Mrs. Francis Manlove Mr. and Mrs. Richard Mason Ms. Linda J. McAleer and Mr. Maitlon Russell Ms. Christina McCaffrey Mrs. Cheryl I. McClenney-Brooker

*List includes all donors of $1,000 or more since January 1, 2009 (does not include event participants). If you feel you should have been included or want to make a correction to our records, please contact our office so we can correct future Golden Circle lists.

For more information on how you can be part of the Golden Circle, e-mail kristina.fransel@pae.nmss.org or call her at 1-800-548-4611. TOLL FREE NUMBER 1 800 548 4611 19


TOP 5

tips for surviving an MRI People living with MS are no strangers to MRI machines. The experience can be uncomfortable, with the loud noises, the confined space and the fear of what the test results could mean. Even newer open MRIs are scary and uncomfortable to a lot of people. Below are the top five ways people living with MS across the country say you can survive “the tube” (as contributed to About.com).

1. Close your eyes. This is by far the most

recommended tip from other people living with MS. Keeping your eyes open will remind you of how confining the tube is and can intensify the fear for some people, especially if they’re claustrophobic. If you close your eyes and keep your hands resting on your stomach, you can try to imagine that you are floating on air and have nothing but space around you.

2. Take a nap or daydream. While you’re

in there with your eyes closed, try falling asleep or daydreaming. As one person put it, you can take a “mini vacation” in your mind. You can be anywhere in your dreams, doing anything. Best of all, it’s free. Try to turn this time into an escape rather than considering it an uncomfortable hassle.

20 JOIN THE MOVEMENT: nationalMSsociety.org/pae

3. Relax. It

may sound easier to say than do, but it’s not impossible. Remember that it’s going to be over soon and there’s nothing that can hurt you. The loud noises are just noises – not something you should be worried about.

4. Keep your mind busy with something

else. If you just can’t seem to relax, try distracting yourself from thinking about what’s going on. There are many ways to do this. Count backwards from a high number or try skipping every two or three numbers. Try reciting your favorite stories, poems or psalms to yourself. Or make a todo list for the rest of the day or week. Get this down and the scan will be over before you know it.

5. Change what you hear. Wearing good

ear plugs is the easiest way to help drown out the noise of the machine and allow you to lie in peace and quiet. That should help you with the other tips above. Another great idea is to ask the technician to play something that you find comforting, like your favorite radio station or nature sounds. You could also bring in your own CD. Try to create a mix tape of songs that bring back fond memories and listen to that mix while you’re getting your scans.

For more tips on how to get through an MRI from people who live with MS, visit MS.about.com.


HEALTH CARE

NEW RESOURCES FOR FUNDING HEALTH CARE Until the health-care reform bill becomes law, access to continuous health insurance is a must for people living with MS. To help people maintain insurance coverage, the chapter is piloting a short- term financial assistance program to help pay for health insurance premiums. COBRA premiums n Designed for people who are currently unemployed and actively seeking new employment. n Assistance provided can go up to, but not exceed, 35% of the premiums or $500 for one to three months. Available once per year. n Eligibility will be reassessed monthly. n To qualify, clients must be actively working with the chapter’s employment services manager and provide weekly updates to employment plan.

Medicare waiting period n Designed for individuals who have been awarded Social Security disability benefits and are awaiting Medicare coverage. n Financial amounts are the same as the COBRA assistance, but this service is available for one to five months. Available once per year. n Eligibility will be reassessed monthly. n To qualify, clients must submit documentation from the Social Security Administration stating when they will begin receiving Medicare benefits and a written plan detailing how they will maintain health insurance coverage for the remainder of their wait time. Contact Christina Forster at 1-800-5484611 or christina.forster@pae.nmss.org to apply or learn more.

TOLL FREE NUMBER 1 800 548 4611 21


HEALTH CARE

A PRESCRIPTION FOR HELP The health-care reform bill that became law in April, while controversial, is a victory for many people living with MS. Three key provisions are huge, said Shawn O’Neail, vice president of federal government relations for the National MS Society. First, the bill will end discrimination based on preexisting conditions. “This means that should someone lose their current insurance, either because they changed employment, lost employment or ended a relationship, they don’t have to worry about being denied coverage because of MS, which we know is a big problem currently,” O’Neail said.

biologic drugs, MRIs, physical therapy, mobility devices and, sometimes, mental health services can add up quickly; the new law provides peace of mind. “We know that when people are diagnosed with MS at a young age, these $1 million or even $2 to $3 million caps can be frightening,” he said. “SHOULD

SOMEONE LOSE THEIR CURRENT INSURANCE, THEY DON’T HAVE TO WORRY ABOUT BEING DENIED COVERAGE BECAUSE OF MS.” ~ Shawn O’Neail

The bill also will limit out-ofpocket medical costs to $5,950, or an average of about $500 per month. While that’s still a lot of money, it’s more achievable than the limitless system that currently exists, he said, and should mean that more people can afford to take all of the therapies prescribed for them. A third big piece of reform is the elimination of monetary caps on coverage, O’Neail said. Standard components of MS care, including 22 JOIN THE MOVEMENT: nationalMSsociety.org/pae

Other elements of the plan provide for long-term supports and services to allow people living with MS to remain independent and in their homes. The CLASS Act, written by the late Sen. Edward Kennedy, is a voluntary insurance program that could provide assistance with everything from home modifications to nursing services and respite care. Some major portions of the bill, such as the elimination of lifetime caps and the CLASS program, will take effect within the next year.

The elimination of pre-existing conditions will take until 2014 for most people. In the meantime, the government will set up a temporary high-risk insurance pool with financial assistance for people with preexisting conditions who have been uninsured several months. Now that key provisions affecting people with


MS have been made law, MS advocates will change their focus to helping shape the bill’s implementation, O’Neail said. The law calls for the Secretary of Health and Human Services to have a great deal of authority on the rollout of the new programs and provisions, he said. For example, HHS will determine the specifics of what constitutes essential minimum benefits that all plans must have. “We’ve made clear our availability as a resource should HHS want our expertise in terms of representing people with chronic disease,” he said. “We want to make sure things are included, such as access to physical therapy, that aren’t normally at the top of these types of benefits lists.”

OTHER IMPORTANT CHANGES FOR PEOPLE LIVING WITH MS

ADVOCACY

AND HOPE n Medicare doughnut hole eliminated over time n Adult children can remain on parents’ insurance up to age 26 n Free preventative services and immunizations n Pathway created for approval of generic biologics n Grants for states to support insurance appeals

Local congressmen join caucus We’re pleased to welcome three new members to the Congressional MS Caucus from the Greater Delaware Valley. Pennsylvania congressmen Robert Brady, Patrick Murphy and Joe Pitts have all signed onto the caucus this spring. This bipartisan group serves as a forum for members of Congress, their staffs, related organizations and individuals to discuss critical health-care, disability, research and other issues affecting people living with MS.

Other local members of the caucus include: Rep. Allyson Schwartz, Rep. Joe Sestak, Rep. Tim Holden and Sen. Robert Casey of Pennsylvania and Rep. Robert Andrews, Rep. Frank LoBiondo and Sen. Robert Menendez of New Jersey. If you don’t see your elected officials’ names on this list, call, e-mail or write a letter asking them to join. Find out which members of Congress represent you and how to contact them at MSactiveNJ.org or MSActivePA.org. TOLL FREE NUMBER 1 800 548 4611 23


ADVOCACY

MS ACTIVISTS MAKE MS A PRIORITY ON CAPITOL HILL IN MARCH At the 2010 MS Public Policy Conference, MS activists pushed forward major initiatives that could lead to increased MS research, in turn greatly improving understanding of the disease itself. More knowledge needed Currently, there are no accurate estimates of how many people in the United States have MS. A national MS registry could provide invaluable information on the incidence and prevalence of the disease, allowing researchers to investigate potential geographic, genetic or environmental risk factors. Toward this important legislation, MS activists, who gathered in Washington, D.C., this March, sought co-sponsors for the National MS and Parkinson’s Disease Registries Act.

Tami Caesar, Karen Mariner, Howard Goldstein and Terry Paylor at the 2010 MS Public Policy Conference Activists are requesting a $15 million appropriation to the DoD’s Congressionally Directed Medical Research Programs for MS research. Supportive legislators are already taking action, circulating a Dear Colleague letter in the House of Representatives and in the Senate. To find out more about MS advocacy and how to get involved in public policy issues, visit nationalMSsociety.org/advocacy. Or call our office to find out about state and local issues.

Supporting respite programs The availability of respite care for all age and disability groups is at a dismal low. While the Lifespan Respite Care Act was passed in 2006, the program has been severely underfunded ever since its creation. Activists urged legislators to commit a muchneeded $94.81 million to help stressed-out families and caregivers. Increasing research funding For the more than 20,000 U.S. veterans diagnosed with MS, as well as all others living with the disease nationwide, more research funding from the Department of Defense could make a real difference. 24 JOIN THE MOVEMENT: nationalMSsociety.org/pae

ATTENTION: GULF WAR VETS LIVING WITH MS If you’re a veteran of the first Gulf War and you’re living with MS, we want to hear from you! This is an important legislative priority throughout our chapter area and the nation, but we’re in special need of veterans living in Pennsylvania’s eighth district. The eighth district, represented by Patrick Murphy, includes Bucks County, a tiny portion of Montgomery County around Willow Grove and parts of two wards in Northeast Philadelphia. Contact Jennifer Strayer at 717-652-2108 or jennifer.strayer@nmss.org to share your story.


Among the Greater Delaware Chapter’s delegation to the Public Policy Conference was Howard Goldstein, a Philadelphia trial attorney and member of the chapter’s Board of Trustees. He embraced the advocacy experience, attending the workshops, hearing the speakers and talking with legislative aides on visits to four legislators’ offices on Capitol Hill. “The Hill visits Howard K. Goldstein, Esq. were a lot of fun,” Goldstein said. “I greatly enjoyed being given an opportunity to explain what our legislators need to do on behalf of the Society if they are sincere about providing meaningful assistance for people living with MS.” The preparatory sessions stressed that Goldstein and his peers were there to put a human face on MS by talking about how proposed legislation affected them personally. “They’re used to seeing our lobbyists,” said Goldstein, who has a family member with MS. “But there’s a big difference between seeing our lobbyists and meeting with people who have MS or who have a family member with MS.” When elected officials learn that their constituents are concerned about an issue, it

changes their whole outlook, Goldstein said. But the only way to let them know you’re concerned is to speak out as an MS activist.

ADVOCACY

Mr. Goldstein goes to Washington Through the Action Alert system, the Society makes it very easy for everyone to become an MS activist, whatever their mobility or physical level, he said. If every American who has MS sent just one Action Alert e-mail a week to an elected official, that’s 400,000 e-mails, he said. Add e-mails from their friends and family, and the potential impact quickly becomes undeniable. “There is great political power in numbers,” Goldstein said. “People out there may not have a lot of money to give, but they can have a significant effect when they join together to lobby for a cause such as MS.” Advocacy has the potential to provide financial resources on a scale unmatched even by the most successful fundraising events, Goldstein said. While the National Institute of Health has been the major source of funding for MS research in the past, he said, the Department of Defense has become an additional significant potential funding source, particularly as the connection between Gulf War service and MS grows. “There’s a lot of promising research being pursued, but the researchers are not there quite yet,” Goldstein said. “I believe that obtaining more government money for MS research would go a long way towards solving the mystery of this disease.”

TOLL FREE NUMBER 1 800 548 4611 25


ADVOCACY

MEET YOUR LEGISLATOR N.J. Assemblywoman Annette Quijano Why did you decide to join MS activists on a wheelchair accessibility tour of the State House in Trenton?

About two years prior to doing the tour, I had surgery and had to be in a wheelchair and I actually used the Philadelphia airport. It was such an eye-opening experience. When this came up, I thought I’d like to see what the state looks like to someone who is in a wheelchair. Are we accessible and are we giving individuals who “Until you ride are wheelchair-bound the same rights we give in someone’s able-bodied individuals? Can they come to the wheels, you State House, sit in the really don’t gallery and be a part of the governing process?

understand what the true obstacles are.”

What did you learn?

I found that the State House is not as accessible as I thought. Doing a wheelchair tour is an on-the-ground viewpoint. I’ve seen the wheelchair-accessible bathroom and never gave it a second thought until I tried to get into the bathroom and finally had to give up. My second surprise was not realizing the pipes underneath the water basin should be

26 JOIN THE MOVEMENT: nationalMSsociety.org/pae

covered. You can actually burn your legs when touching the pipes – I never thought of that. I really give your organization credit for doing these tours. Until you ride in someone’s wheels, you really don’t understand what the true obstacles are. That’s problematic for society as a whole. You’re given a false sense of thinking you’ve made a building accessible. Until you get in a wheelchair and actually do the tour, you really don’t realize and acknowledge that we are not as accessible as we would be led to believe. How will this tour affect you as a legislator? I want to have a discussion with the Office of Legislative Services because there were certain committee rooms we went to, that if we remove several rows of chairs, it could be a short-term fix for some of the barriers. I found that to try to open a wooden door in a seated position is extremely hard. We’re going to have to explore installing a button so the door will open for you. We’re on a budget crunch, but I think there are short-term and long-term fixes we have to look at. I really would recommend to as many legislators as possible to get in a chair and do a tour of Trenton or of city hall. All of us have been lulled into a false sense of thinking we’ve taken care of the problem. It takes until you sit in that chair or even walk in with crutches to know where you can and can’t go. I was in a wheelchair going from the State House to the annex, and I know that there’s a slope


Make a mark on chapter programs Annette Quijano at the accessibility tour in Trenton, N.J.

How will this influence your legislative priorities?

I need to meet with the Society and other groups to start looking at the most egregious barriers and obstacles and work from there. The first step is to recognize that there’s a problem and see how we can look at short and long-term fixes and the cost. I’ve already been working on an issue with a post office in my district. There’s only one in the borough of Roselle and it is not accessible. I’ve met with postmaster and hope to have further discussions with him on how to fix it. If people call ahead, the staff will open a side entrance, but I don’t think people should have to come through a side entrance. They should be able to come through the front like everyone else and buy stamps like everyone else.

Sound like fun? Help us spread MS awareness to public officials throughout the region. We’re planning more wheelchair accessibility tours throughout South Jersey and we want you to be involved! Contact Karen Mariner at 1-800-548-4611 or karen.mariner@pae. nmss.org if you’d like to help bring a tour to your community.

PROGRAMS

between the two buildings, but I never thought twice about it. When I got in the wheelchair I went flying.

The Greater Delaware Valley Chapter is taking a more community-based, grassrootsdriven approach to the educational programs we provide. What does that mean for you? More resources for enriched programs at a selfhelp group near you, more teleconferences that make it easy to learn from the comfort of your living room, more access to programs being held by our partners in your community – and more input. We want your ideas for workshop topics and great speakers on issues affecting people living with MS. We also welcome all suggestions of meeting places in your community – and if you have a connection to that venue, all the better. For instance, if you’ve found an accessible play place that your kids love, let us know. That might be a great location to hold an event for families. Or if your favorite accessible restaurant lends its banquet hall for meetings, we’d love to add it to our list. We need you to be our eyes and ears in the 18 counties we serve. Contact Lara Estomin at 1-800-548-4611 or lara. estomin@pae.nmss.org with program and location ideas. TOLL FREE NUMBER 1 800 548 4611 27


FACE OF MS

Face of MS: Linda Noble Topf As an ordained minister, professional speaker, contributing editor and author, Linda Noble Topf challenges us to “love ourselves well.” An awardwinning graphic designer before her diagnosis, she later earned master’s degrees in applied psychology and theology. She is also a life, career and wellness coach and offers online workshops and one-on-one counseling to help people with MS live their best lives.

Linda Noble Topf

Linda is the author of “You Are Not Your Illness: Seven Principles for Meeting the Challenge,” was a creative force behind Philadelphia’s 300th birthday celebration and designed “Exceptional Americans Who Have Achieved Remarkable Success,” now renamed as “Inspiration,” a permanent exhibit at the National Liberty Museum. Learn more about Linda and her services at youarenotyourillness.com.

How were you diagnosed with MS?

How did you respond?

When I was 17, in 1966, I temporarily lost vision in my eyes and they had no idea what it was. It wasn’t until 1981 that I was diagnosed with MS after I woke up one morning and my right side had gone numb. I went to three doctors and the third doctor, an MS specialist, gave us the news. Stunned, my husband and I asked him, “What can we do about it?” And this doctor said, “There’s nothing you can do about it. You can just sit and wait.” I pushed, “What do you mean, wait? Isn’t there anything I can do – diet, massage, exercise?” He coldly answered, “No, just go home and wait. You’ll probably end up in a wheelchair someday.” While at first, we were devastated by this news, little did I know that my mission in life of delivering a message of hope and purpose would passionately evolve from this defining moment.

We began a quest into what we could do, and in 1984 I started an organization called The MS Initiative. I placed an ad in Philadelphia Magazine seeking people with MS who wanted to look at treatment alternatives with me. Ninety people answered this advertisement! Spurred on by this incredible response, I created seminars on alternative treatments, including nutrition and exercise, spirituality and caregivers. The MS Initiative lasted about five years and expanded into nine states. It was wonderful. People got back in touch with the power they always had, instead of just being labeled as having an illness. They began to rediscover, reclaim and redefine what it really means to be alive. In 1995, I wrote “You are Not Your Illness,” published by Simon and Schuster, out of the learnings, lessons and teachings I experienced with all these inspirational people. (For a free download of the first chapter of this book, please visit my website.)

28 JOIN THE MOVEMENT: nationalMSsociety.org/pae


Tell me about your new career as a wellness life coach and counselor.

I also offer one-on-one counseling and coaching in person, on the phone or online. Many people are not comfortable talking in a group setting. They seem to feel safer talking while sitting at home in their Snuggies. This private setting also presents an opportunity for us to go into greater depth about personal issues. Sessions are generally an hour. I offer the first 30-minute session free, and I also give a discount to clients after they’ve worked with me for a couple of months. In coaching and counseling, we work on validating and acknowledging your core strengths. Life changes, technology changes, relationships change. Who you are in your core center is never going to change. Once you identify your core strengths, we work on a three-month action plan. I’ll get you back in touch with your soul and your essence – who you really are. Once you’re in touch with that, there is a good chance you will not go off path again. And if and when you do, you can always refer back to your core strengths and your action plan to bring yourself back on track or you can reach out to your friends or your MS community. Tell us about your upcoming book, “Wheelchair Wisdom.”

When I first began using my bright green electric scooter, I was so excited! It allowed me to go to the flower show, the Philadelphia Art Museum, the mall, concerts at the Mann Music Center – anywhere! I have traveled around the country and the world with my scooter. I wrote “Wheelchair Wisdom” because I see a wheelchair as a metaphor for freedom, rather than as an instrument of entrapment. I wish everyone a safe summer. Be aware and keep your heart open.

FACE OF MS

Today I assist people in choosing to see our condition as a blessing, even though we are challenged by illness, injury or loss. I hold online workshops dealing with various topics, where there are people on the line from all over the country! It’s fun to speak to people from Boston or Camden or San Francisco or the Main Line because people have many of the same issues. I’ll be holding a free online course this fall – please watch my website for more details and dates.

“Wheelchair Wisdom” addresses the depression and alienation that can result from illness or injury or aging, and illuminates a different spiritual path that can turn self-defeating thoughts into courageous actions and freedom. The book introduces a new conversation of possibility and helps the reader re-examine, update and shift worn-out beliefs that may limit acceptance, courage, compassion and faith. The book speaks to the human being behind the life circumstances.

Make Linda “America’s Next Top Spiritual Author”! Help Linda win a contract with a major publisher and a $50,000 marketing package for her new book, “Wheelchair Wisdom.” Follow these easy steps to vote for her proposal. n Go to NextTopAuthor.com and enter 22 in the box for “Author ID Number” n On Linda’s page, you can listen to her pitch for her book and read a summary n Click on the “Click to Register” link and enter your name and e-mail address n Check your e-mail for a confirmation message and click on the link within n Click on “Return to Author Profile,” then “Vote for this Author” to register your vote

TOLL FREE NUMBER 1 800 548 4611 29


FUNDRAISING

Celebrate 25 years of MS support at charity golf tournament Join Mike Shea and 333 Belrose Bar & Grill as they celebrate the 25th anniversary of their Golf Classic benefiting the Greater Delaware Valley Chapter.

Now he says he’ll take it one year at a time. The event typically draws about 100 people and raises about $12,000-15,000. “It’s a lot of work,” he said – a labor of love.

Shea, 57, has been putting together his golf tournament for 30 years. In its early years, he supported charities like the local Alzheimer’s organization and Big Brothers Big Sisters. His wife was diagnosed with MS 25 years ago, and the event’s proceeds have come to the National MS Society ever since. But this may be the classic’s last year. Shea considered retiring last year but was convinced to keep the tournament going at least one more year to hit the 25-year milestone.

Monday, June 28, 2010 Downingtown Golf and Country Club 93 Country Club Drive Downingtown, Pa. Registration: 10:30-11:30 a.m. Shotgun Start: Noon Your $200 entry fee includes lunch, greens fees, cart, goodie bag ($100 value), refreshments on the course, dinner buffet and two-hour open bar. To register, call Mike Shea at 610-842-7154.

GADGET CORNER: Turn talk into type with Dragon NaturallySpeaking

Send e-mails and instant messages, surf the Web, create documents and more – all by simply speaking. The Dragon NaturallySpeaking 10 suite of products allows you to completely control your computer with your voice and turns your speech into text three times faster than most people type. The standard version is $99 and the preferred mode, which offers additional features, is $199. For Mac users, there’s MacSpeech Dictate for $199. A high-quality headset is included with all versions. To learn more or purchase the software, visit www.nuance.com/naturallyspeaking. 30 JOIN THE MOVEMENT: nationalMSsociety.org/pae


Summer days at Dorney Park & Wildwater Kingdom are a Greater Delaware Valley tradition.

Local people living with MS and family members can purchase Dorney Park tickets for $28.50 (adults) or $20 (juniors/seniors) for any day during the park’s 2010 season. There’s no limit in the number of tickets you can order at this special discounted rate.

This year, the chapter is revamping our family program to provide greater flexibility and expanded access to great park ticket discounts.

To order, just visit http://mygroup. dorneypark.com and enter our company ID: fightMS. The park season runs through October 31.

Classifieds FIRST-FLOOR CONDOMINIUM: Wheelchair-accessible home in Mount Laurel, N.J. with ramp (kitchen not wheelchairaccessible). 1 floor, 2 beds, 2 baths. Move-in ready. Asking $160,000. Call Nancy Hartwick at 856-608-7695.

ACCESSIBLE HOME: 3 BR, 3.5 baths. First floor is completely wheelchair-accessible. 1 BR and full bath on first floor. Ramp in back. Asking $279,900. Located in Bridgeport, Pa. (Montgomery Cty.). Call Mike at 610-8289558.

EXTRA-WIDE WALKER: Brand-new. Comes with cushion seat, cable breaks and a basket. Maroon-colored frame with white, nonmarking wheels. Asking $150. Cherry Hill, N.J. Call Laurie Geller at 856-751-7131.

JIFFY ELECTRIC WHEELCHAIR: Brandnew w/ battery. Fully operational. FREE. Roxborough, Pa. Call Janet at 850-607-2964.

BRAND-NEW WHEELCHAIR: Still in box, black. FREE. Marmora, N.J. Call Sal after 4 p.m. at 609-390-0598. USED WHEELCHAIR: A few years old, in excellent condition, black. FREE. Marmora, N.J. Call Sal after 4 p.m. at 609-390-0598.  ELECTRIC HOSPITAL BED: Used, fully functional, tested working electric hospital bed. 6 years old. FREE. Fox Chase area. Call Gene at 215-663-8746. ELECTRIC HOSPITAL BED: 1.5 years old, in good condition. FREE. Located in the Nicetown section of Philadelphia. Call Sharon at 215-455-4123 (evenings are best).

PROGRAMS

Celebrate summer at Dorney

ELECTRIC HOSPITAL BED: Brand-new, long twin size on wheels. FREE. Roxborough, Pa. Call Janet at 850-607-2964. POWER WHEELCHAIR: Used power chair in great condition, about 5 years old, works well. Powered with right-handed controls. Reclines back and has 2 different styles of foot rests (feet separated and single plate for both feet). Black leather seat (no cushion) and dark blue wheel base. Asking $1,250 OBO. Located in Phila. Call Adrienne at 215-747-7501 in the evening or 215-906-1136 during the day. Pictures available upon request. MIRROR: 17” wide by 31” tall, green w/ gold brushing on it. FREE. King of Prussia. Call Carol at 484-674-7489. TOLL FREE NUMBER 1 800 548 4611 31


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Thank you and congratulations to more than 12,000 people who walked, rolled or volunteered at Walk MS 2010. By joining one of our 17 fun, family-friendly events in the region, you helped us take the next step in creating a world free of MS.


MSConnections Issue 2 2010