2010 Issue 3
Greater Delaware Valley Chapter
Moving forward 20 years of civil rights act for Americans with disabilities The Americans with Disabilities Act, which celebrated its 20th anniversary this summer, promised people with disabilities an equal opportunity to live, work and play in their communities. This landmark federal legislation made it illegal to discriminate on the basis of disability and has helped reduce barriers and change perceptions for people with disabilities as they live their daily lives and pursue employment opportunities.
INSIDE THIS ISSUE:
Continued on PAGE 6
Gender difference in MS Pages 8-9
Scholarship Resources Page 12
Addressing the fourth tier Pages 24-25
Face of MS Pages 28-29
Notice of annual meeting 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. Š2010 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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The Greater Delaware Valley Chapter of the National MS Society is a volunteer-governed nonprofit organization. We depend on our volunteer board of trustees to guide the organization, ensuring that all of its actions are in the best interests of local people living with MS. The chapter will hold its annual meeting on November 18 at the Crowne Plaza Philadelphia/ Cherry Hill, 2349 West Marlton Pike, Cherry Hill, N.J. This will be an opportunity for members to meet trustees and staff, hear about the successes and challenges of the past year and be part of the required annual business meeting of the chapter. As in past years, we will conduct the election of trustees electronically in advance and will announce the result at the meeting. Members can nominate candidates to the board of trustees by e-mailing pae@nmss.org, calling 1-800-548-4611 or sending a letter to: National MS Society 1 Reed St.,#200 Philadelphia, Pa. 19147 For voting purposes, all attendees must register by calling 1-800-FIGHT-MS and choosing option 1, 9 a.m. to 7 p.m., Monday to Friday, or visiting calendarMS.org.
IN BRIEF
New hope for old chemo drug Methotrexate, a 62-year-old chemotherapy drug already used to treat psoriasis and rheumatoid arthritis, may offer new hope for people with progressive forms of MS, as well.
More than 80% of people with primary and secondary progressive MS who had the drug injected into their spinal canal remained stable or showed improvement one year after treatments, according to a recent study. “We have opened an avenue of treatment for an otherwise untreatable form of MS,” said Dr. Saud A. Sadiq, the study’s lead author.
FDA panel recommends approval of oral fingolimod A U.S. Food and Drug Administration advisory committee recommended that the agency approve marketing of Gilenia capsules (formerly called fingolimod, Novartis International AG) for the treatment of relapsing MS.
If approved, fingolimod would be the first oral diseasemodifying therapy for the treatment of MS. The FDA is not required to follow the recommendations of its advisory committees, but it usually does. According to Novartis, a final decision about whether to approve the drug should come in September.
Brain atrophy may cause depression A new UCLA study suggests brain atrophy may be the leading cause of depression for people with MS. This atrophy, marked by a shrinkage of brain mass, occurs in the hippocampus, a part of the brain involved in a number of functions, including mood and memory. Researchers believe this leads to the development of depression.
Fast track status for IV alemtuzumab Genzyme Corporation announced that intravenous alemtuzumab has been designated by the U.S. Food and Drug Administration as a “Fast Track Product.” This designation should expedite its future review by the FDA after Genzyme submits results of current Phase 3 trials that are underway. Alemtuzumab is a humanized monoclonal antibody directed at CD52 (a protein on the surface of immune cells) that is
currently approved by the FDA for treatment of B-cell chronic lymphocytic leukemia. Earlier Phase 2 studies showed that treatment with alemtuzumab reduced the accumulation of disability and the frequency of relapses in people with early relapsing-remitting MS, compared with Rebif.
Protein helps repair myelin damage A protein that helps build the brain in infants and children may aid efforts to restore damage from multiple sclerosis and other neurodegenerative diseases, researchers at Washington University School of Medicine in St. Louis have found. In a mouse model of MS, researchers found that the protein CXCR4 is essential for repairing myelin, the protective sheath that is damaged in diseases such as MS.
Study measures functional performance in MS Drexel University in Philadelphia is seeking participants for a study that examines the performance of everyday activities such as using a telephone, paying bills and driving in people with MS. To sign up or learn more, please contact Maria T. Schultheis, PhD, at 215-895-6105 or schultheis@drexel.edu.
TOLL FREE NUMBER 1 800 548 4611
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President’s message
City to Shore celebrates 30 years Like most things involving peanut butter and jelly sandwiches, the Bike MS: City to Shore Ride Tami Caesar, had a humble President beginning. When news anchor Larry Kane first proposed the idea to our chapter, he simply thought a cycling fundraiser from Philadelphia to the Jersey Shore might be a good way to raise a few much-needed dollars for a cause that is very dear to him. It was 1980, nearly 17 years after Larry’s mother died from the disease, when the first group of 78 cyclists rode from Philadelphia to Ocean City with only one rest stop featuring the aforementioned PB&J sandwiches. In 2010, the event will attract more than 7,000 cyclists, requiring 1,200 volunteers, 200 safety marshals, 24 bike mechanics and five rest stops stocked with everything from soup to grilled chicken sandwiches.
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disease-modifying medications and the first oral treatment, Gilenia, is expected to be approved any day now. These advancements are possible thanks to investments like the $33.5 million designated for MS research last year by the Society The funding for research is vitally important, but it can never overshadow the many ways we help local people living with MS. Events like City to Shore made it possible for us to help Nicole Hanna, a young Philadelphia woman living with MS. Through our HomeABLE program we were able to undertake major modifications to the Hanna’s bathroom to make it more accessible for Nicole, increasing her independence. Programs like HomeABLE would simply not be possible without the hard work of our event participants, volunteers and donors.
The funds raised has also increased – the ride on September 25 and 26 is expected to generate more than $5 million. If it does, the total raised by City to Shore cyclists over the 30 years will top $50 million.
On behalf of everyone who has ever been affected by MS, I want to thank that first group of cyclists and the participants every year since for helping build an event that has had a truly profound effect on people living with MS and their families. I know that cyclists often ride the first time for the personal challenge. However, many stay involved because of a commitment to our cause.
The outlook for people living with MS has also changed over the years. Today, there are six U.S. FDA-approved
On that note, I invite those of you who are not taking part in the event to join me at the finish line in Ocean
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Sincerely,
could participate together. Hurry. National MS Society, please change your policy. Hurry. Sincerely, Kevin Ansley, West Chester, Pa. Team Ansley Photo Finish
LETTERS
City on Saturday afternoon or at PATCO’s Woodcrest Station on Sunday afternoon. Just having people living with MS at the event to cheer and say thank you is one of the many reasons that City to Shore is known as a truly memorable and meaningful cycling experience.
EDITOR’S NOTE: The safety of all Bike MS cyclists is the National MS Society’s primary concern. The need exists to not only protect younger cyclists, but all cyclists who participate in Bike MS events.
Tami Caesar President
To the editor: This year, children under the age of 12 will not be allowed to ride their bikes in the hugely popular Societysponsored bicycle events. The Society’s decision was sudden and a huge personal blow for me and my children, ages five and seven. My sons have been working for the last two years on mastering their bikes so that they could ride with me this year. It is one of the few bonding experiences that I could physically share with my kids. I believe that this decision was not thoroughly thought through, as many other charity organizations include families with children in their bike ride fundraisers. I would like to propose an additional bike ride that would allow children to continue to feel part of something bigger, a team fighting a terrible disease that is destroying someone they love. They wouldn’t have to be very long – five or ten miles could easily be set near the end of the courses in the towns where the rides end. The Society staff already has the finish line and post-race party set up. And my sons and I
In 2007, the National MS Society convened a task force representing a cross-section of the organization to review existing safety strategies for Bike MS and to make recommendations to ensure the continued safety of all participants. Through careful analysis of industry practices, and after review of our claims history, we developed a youth policy to include a minimum age requirement. While we appreciate the suggestion that we create an additional bike ride designed for families with younger children, our research has shown limited interest in cycling events on shorter, closed routes. Moreover this type of event is much more expensive to operate and it is simply not something we can undertake at this time. The primary reason we stage Bike MS rides is to raise as many fundraising dollars as possible for research and direct services for people living with MS. We encourage children to continue to participate in our Bike MS events by fundraising, handing out medals and other volunteer activities. TOLL FREE NUMBER 1 800 548 4611
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ADA
Continued From PAGE 1 The ADA was intended to provide the kind of civil rights for people with disabilities that women and African Americans received in the 1964 Civil Rights Act, said Steve Gold, a disability law attorney in Philadelphia.
“Before the ADA, discrimination of people with disabilities was never talked about as a civil rights issue outside the disability community, and now it is. That’s a huge change."
It became clear by the late 1980s that a national civil rights statute protecting people with disabilities was needed, Gold said, and leaders in the disability rights movement stepped up the pressure on the federal government.
Finally, on July 26, 1990, President George ~ STEVE GOLD, H. Bush signed DISABILITY LAW ATTORNEY the Americans with Disabilities Act into law. This legislation established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities. However, it also contained a lot of compromises. Only employers larger than a certain size were required to comply. Insurance companies carved out protection against having to cover people with disabilities. And there was no urgency to make existing facilities accessible, just the requirement that new ones should be. 6
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Still, the passage of the bill was a victory for people living with MS and other disabilities across the country. And 20 years later, “the glass is clearly half-full,” Gold said. “Unequivocally.” Mark Storey never thought about the ADA before he was diagnosed with MS a decade ago, but he now realizes the importance of public accommodations such as disability parking spots and ramps, as well as employers who put an emphasis on helping workers with disabilities thrive. Within a year of starting as a software analyst for Conair Corp., Storey began having difficulty walking. For a while, he told his new boss that he had a bum ankle, then he realized he couldn’t continue making up excuses. “Finally I told my boss I had MS, and he asked why I didn’t tell him sooner,” said Storey, who lives in Glassboro, N.J. “He was concerned.” As Storey’s difficulty walking grew, his employer offered to move him to a first-floor office so he wouldn’t have to climb the stairs to his department on the second floor. And his colleagues and managers have made it common practice to come to Storey’s work area when they need to discuss something, rather than requiring him to navigate the stairs between their two floors. He’s free to set his schedule around doctors’ appointments, and some vice presidents have even offered him their parking spots by the front door. He chooses to park in the disability spots a little farther away. “They’re more than accommodating,” Storey said. “The people here are very good.” The ADA started the process of changing the American culture and attitude toward people with disabilities, Gold said.
But there area still areas where the glass is mostly empty, Gold said. Despite Storey’s experience, little progress has been made in employment of people with disabilities, he said. Weak enforcement by the EEOC, coupled with juries who don’t think of disability as a civil rights issue, has meant that companies aren’t held accountable for unfair treatment of employees with disabilities. Sarah Smith (name changed to prevent her identity), knows firsthand that employers have a long way to go and a lot to learn. When she was diagnosed with MS several years ago, her boss sent an e-mail to the company’s entire 150-person staff, notifying them of her diagnosis. While the message may have been well-intentioned, Smith found it devastating.
and it basically made me unemployable in my industry,” she said. When she returned, some of her colleagues, unsure of what to say, stopped speaking to her. The owner has never acknowledged her illness.
ADA
“Before the ADA, discrimination of people with disabilities was never talked about as a civil rights issue outside the disability community, and now it is,” he said. “That’s a huge change.”
“I haven’t asked for accommodations because I don’t want to show any signs of weakness in my job,” said Smith, who experiences constant fatigue. “I don’t want to remind anyone I have a disability. I sit here and fake it.” For people like Smith, the promise of the ADA will only be reached if activists remain focused and committed to full implementation of the ADA and to advocating for people living with disabilities. People across the spectrum of disabilities – mental and physical – must band together to affect positive change, Gold said. “The glass will never get full unless we develop a national disability movement,” he said. “We’ve got to do more.”
“I felt like it was a huge breach of confidence,
ADA Amendments Act: What does it all mean? On September 25, 2008, the ADA Amendments Act (ADAAA) was signed into law. It became effective on January 1, 2009. The ADAAA makes important changes to the definition of the term “disability.” The basic definition remains the same -- an impairment that substantially limits one or more major life activities, a record of such an impairment or being regarded as having such an impairment. However, it changes the way the statutory terms should be interpreted.
Of particular relevance to people with MS: n The definition of “major life activities” has been expanded to include major bodily functions including “functions of the immune system, bowel, bladder, neurological and brain functions,” to name a few. n An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active. n Mitigating measures other than “ordinary eyeglasses or contact lenses” shall not be considered in assessing whether an individual has a disability. TOLL FREE NUMBER 1 800 548 4611
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RESEARCH
GENDER
DIFFERENCES MAY HOLD A KEY TO MS While nerve and immune cells are the primary players in MS, research into the role played by sex hormones may offer new opportunities for understanding the disease and developing therapies. “We often focus on one factor or one cure, but this is a complex disease and there may be many treatments,” said Dr. Dina Jacobs, a neurologist at the Hospital of the University of Pennsylvania studying the effects of estrogen on MS. “There may be a complex interplay among hormones, and that’s what I find fascinating.”
rates in women with MS before, during and after their pregnancies. They found a 70% decrease in relapses during the third trimester and a 40% increase in the first three postpartum months, Jacobs said. UCLA researcher Rhonda Voskuhl realized that those results correlated with sex hormone levels, which rise during pregnancy and drop precipitously after childbirth. The swing is related to changes that scale back the immune response during pregnancy to tolerate the fetus, Jacobs said.
“Estriol seems to be a very hopeful story in MS. We are really excited about it.”
Voskuhl’s early pilot studies testing the estriol form of estrogen in women with relapsing-remitting MS showed a 79% decrease in new lesions, as well as improved results in cognitive tests.
As early as 1893, doctors ~ DR. DINA JACOBS observed that MS seemed to begin during pregnancy, remain static until the next The concept has now pregnancy and then become progressively moved into Phase II clinical trials testing estriol worse. As a result, until the 1950s, women in conjunction with Copaxone, with Jacobs with MS symptoms were advised not to heading up recruitment at the University of become pregnant. Pennsylvania. If successful, this trial could lead to a larger, definitive trial and a new oral More recent studies have compared relapse treatment option for women with MS. 8
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Major benefits to estriol therapy are that it is taken orally, has fewer side effects and is far cheaper than current therapies. While it does carry some of the same risks as hormone replacement therapy, estriol is a less potent estrogen than what’s used in HRT and young women may be at lower risk for these issues, she said. Another phenomenon that fascinates Jacobs is the role of breastfeeding in MS. A recent study showed that exclusive breastfeeding for at least two months provided a protective effect against MS, and that women whose menstrual period resumed in less than four months were at an increased risk of postpartum relapse. Meanwhile, testosterone, a male sex hormone, also appears to play a protective role against MS for men. MS is two to three times more common in women, with recent epidemiologic studies suggesting it may be even higher. Men have a much lower incidence of the disease early in life, when their testosterone levels are higher, Jacobs said. But by the time men and women reach their 40s and 50s, they are diagnosed in equal numbers. In 2007, UCLA’s Voskuhl reported that one year of treatment with a gel containing testosterone (applied to the skin) in 10 men with relapsing-remitting MS resulted in significant improvements in cognitive function and in slowing brain tissue loss.
men with relapsing-remitting MS. Further study involving larger numbers of patients and control groups is necessary to confirm these early results and to ensure the safety and effectiveness of testosterone treatment for MS.
RESEARCH
“Estriol seems to be a very hopeful story in MS,” Jacobs said. “We are really excited about it.”
Back in the lab, Dr. Elizabeth P. Blankenhorn at Drexel University is trying to separate the influences of genes versus hormones in mice with the MS-like disease EAE. She and her team are digging into the genetic underpinning of MS, seeking to identify genes that are responsible for gender differences. Other potential areas of gender study include how breastfeeding offers a protective effect, how menopause affects the course of MS and further research into testosterone as a therapy, Jacobs said. “There are many, many more things to look at,” she said.
Get involved Investigators are currently recruiting women 18-50 years old with relapsing-remitting MS who have had at least one relapse in the past two years. For more information or to get involved with the University of Pennsylvania test site, call Vanessa Zimmerman at 215-349-5162.
This small study shows that testosterone treatment may have a therapeutic benefit in TOLL FREE NUMBER 1 800 548 4611
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RESEARCH
SOCIETIES COMMIT MORE THAN $2.4 MILLION TO CCSVI RESEARCH The National MS Society and MS Society of Canada have committed more than $2.4 million to support seven new research projects focusing on the role of CCSVI (chronic cerebrospinal venous insufficiency) in MS. CCSVI is a reported abnormality in blood drainage from the brain and spinal cord that may contribute to nervous system damage in MS. Reports of success from a procedure to correct the abnormality have given many people with MS hope. All of the recently funded research applications underwent a rigorous expedited review process by an international review panel that included experts drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The two-year grants began July 1. These new studies are necessary because we don’t yet know whether, or if so how, CCSVI contributes to MS disease activity. They will achieve several important goals. First, the new studies will carry out significant steps needed to confirm the phenomenon originally described by Dr. Paolo Zamboni, who identified the abnormalities, and resolve the questions raised by him and others as to whether CCSVI is a cause of MS or related to MS in some other manner.
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Second, these studies will resolve conflicting data from previous research, such as how frequently CCSVI occurs in MS and how often it occurs in people who do not have MS. Third, if blockages are found, the findings will speed the way to determining whether therapeutic trials to correct them will be helpful in improving or altering the MS disease process. Together, these studies aim to further understand the role of CCSVI in MS and identify optimal methods for screening for the condition, which would be necessary to determine the next steps required in advancing this CCSVI lead. They will also be of value in designing protocols for possible exploratory therapeutic trials that might be independently undertaken in North America or abroad. For more information on CCSVI, recent media reports and the Society’s response, visit nationalMSsociety.org/CCSVI.
Managing the costs of MS meds is a huge challenge, especially for people with no insurance or who are underinsured. But some help is available. Each disease-modifying drug manufacturer and many makers of medications that treat MS symptoms have Patient Assistance Programs (PAPs), which offer free or low-cost medications to those who qualify. Prescription drug discount programs can help as well. Ask your doctor if there is a generic version available for any prescription.
Services
Need help paying for MS drugs?
Patience may be needed to get benefits, however. You can get support and information from the Society too. Visit nationalMSsociety.org/underinsured or call us at 1-800-344-4867. RESOURCE CENTERS — These centers can help with information, applications and exploring your options. Name Website Phone Number NeedyMeds (online only) NeedyMeds.org Partnership for Prescription 888-477-2669 pparx.org Assistance RxAssist 401-729-3284 RxAssist.org For help in purchasing disease-modifying drugs Drug Name Resource Avonex MS Active Source Betaseron BETA PLUS Patient Support Program Copaxone Shared Solutions Extavia Extavia Patient Support Program Novantrone Novantrone Patient Assistance Program Rebif MS Lifelines Access Made Simple Tysabri MS Active Source
Website msactivesource.com betaseron.com sharedsolutions.com No Website No Website
Phone 800-456-2255 800-788-1467I 800-887-8100 866-925-2333 877-447-3243
877-447-3243 mslifelines.com msactivesource.com 800-456-2255
For help in purchasing drugs that address MS symptoms Drug Website Ampyra (fampridine-SR) ampyra.com/newly_prescribed/financial Baclofen (intrathecal only) rarediseases.org/programs/medication Cymbalta (duloxetine HCI) lillycares.com Ditropan XL (oxybutynin chloride) jjpaf.org Neurontin (gabapentin) pfizerhelpfulanswers.com
Phone Number 888-881-1918 800-999-6673 800-545-6962 800-652-6227 866-706-2400
Call an MS Navigator™ at 1-800-344-4867 about other drugs or state-supported patient assistance programs. The information here is not guaranteed to be up to date as programs may change, but we hope this helps you get started.
TOLL FREE NUMBER 1 800 548 4611 11
SCHOLARSHIPS
Three local students receive Society scholarships The Greater Delaware Valley Chapter has awarded scholarships to three local students through its annual scholarship program. The program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent who does; or anybody living with MS who has not yet been to a post-secondary school. Scholarships range from $1,000 to $3,000 and typically cover one year. Information about scholarships for 2011-12 will be available on the National MS Society Web site beginning on Oct. 1, 2010, and applications will be due by midJanuary 2011. For more information, call 1-800-344-4867 or visit nationalMSsociety.org.
Higher Education Resources n Scholarship guide: This 22-page guide helps you identify scholarships, avoid scams and navigate your way through the complex financial aid process. It’s available online only at nationalMSsociety.org/pae. n Funding a College Education: Resources to Make the Journey a Little Less Scary
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Congratulations to this year’s outstanding scholarship recipients.
Kevin Clark, Wyncote, Pa. La Salle College High School Plans to attend University of Scranton as business administration major Anthony Simonetti, Bellmawr, N.J. Triton Regional High School Plans to attend Rutgers University as education major Jessica Volpe, Philadelphia, Pa. Archbishop Ryan High School, Plans to attend Bloomsburg University of Pennsylvania as undeclared major Community services coordinator Jennifer Kelley will help you feel more comfortable with finding the means to pay for your son or daughter’s college education and knowing which options are right for you. Light refreshments will be served. n Saturday, October 9, 10 a.m. – noon, Location TBD n Saturday, October 16, 10 a.m. – noon, Cherry Hill Public Library, Cherry Hill, N.J.
Register by calling 1-800-FIGHT-MS and choosing option 1, 9 a.m. to 7 p.m., Monday to Friday, or visiting calendarMS.org.
By Mindy Bartscherer, PT, DSc
A
physical therapist is a health-care professional who is an expert in understanding movement and why an individual has difficulty moving and functioning. PTs work with clients of any age with many different diseases or medical problems to decrease pain and improve function and independence. A neurologic physical therapist is a PT who specializes in the evaluation and treatment of individuals with movement problems and functional limitations due to disease or injury of the nervous system. Neurologic physical therapists understand the ways in which multiple sclerosis can impact a person’s ability to do the things they desire to do. They are aware of the impact of fatigue, spasticity, weakness or balance difficulties on function. They are able to determine the myriad factors limiting independence and work with the client to improve his/her ability. A neurologic clinical specialist (NCS) is a neurologic physical therapist with advanced training and practice in the area of neurologic physical therapy. In addition to training and practice, these PTs have passed a specialty examination of the American Board of Physical Therapist Specialists and are awarded the title of Neurologic Clinical Specialist.
Column
Finding the Right PT for you n The National Multiple Sclerosis Society provides limited PT services designed to help maintain or improve functional independence. Contact the Society for more information at 1-800-548-4611. n Outpatient physical therapy: If your insurance directs you to specific outpatient centers, call ahead to determine if that center has neurologic clinical specialists or neurologic PTs. If not, ask for therapists who, are experienced in working with individuals with neurologic impairment, especially MS and have rehabilitation experience n Contact the American Physical Therapy Association and ask for contact information for neurologic physical therapists in your area at 1-800-999-2782, ext. 3237, www.neuropt.org or www.apta.org n Contact the outpatient centers associated with inpatient rehabilitation centers When you work together with a PT towards your goals, you will be successful! Do you have a question for physical therapist Mindy Bartscherer? Please send them to mbartscherer@ yahoo.com.
TOLL FREE NUMBER 1 800 548 4611 13
FUNDRAISING
30-mile journey toward a cure “One of my proudest moments was watching him walk up that hill,” remembered Renie Gowder, whose husband John lives with secondaryprogressive MS. It was the first time John had participated in Challenge Walk MS, and while Renie scooted up the first large hill on the second day of the walk, she watched her husband walk up it. “Just to see him complete that, I was so proud of him,” she said, overcome by emotion.
Renie hopes that walking in Challenge Walk will someday lead to a cure. She says that’s what keeps her coming back each year. The money her team has raised has helped pay for important research, which has in turn led to new, effective medications – so effective, she said, that for the past six or seven years, John has remained “exacerbation-free, for the most part. I don’t know where he would be without the medications.”
John was 29 years old when he was diagnosed with MS in 1983 after six years of symptoms, Renie said. He dealt with weakness, partial paralysis and blindness. Doctors told him he’d probably never walk again without assistive devices.
Renie and her team have been participating in the event since 2003. John joined them for the first time in 2006. “We always did the one-day walks,” she said, but decided with John’s ongoing daily challenges that they’d try to take on the Challenge Walk. Her team, Curesading Myelinators, is made up of family, friends and other Challenge Walkers they’ve met at previous events. “We became very close friends and embraced them into our little circle,” she said.
Challenge Walk helps John realize “he’s not alone out there,” Renie said. He only knew one other person with MS before participating in the Challenge Walk, she said, but he’s since found camaraderie with a whole group of people he could relate to.
Together, they have raised more than $85,000 for the event. A lot of the money is raised through a personal letter they write every year asking for donations. They also have four poker tournaments a year, beef and beers, car washes and product parties, she said. John Gowder with teammate at Challenge Walk MS 2009 14 JOIN THE MOVEMENT: nationalMSsociety.org/pae
The team has become a staple at Challenge Walk each year. And they’re easy to find with their red bucket hats. Her daughter picked out
Renie Gowder with teammates at Challenge Walk 2009 the hats after the staff advised everyone they should wear hats during the walk. “Everyone asked us if we were part of the Red Hat Society,” she laughed. “Now it’s become our signature.” Though at times MS is a struggle for the whole family, they try to keep a positive outlook. And they continue fighting for a cure. “You have to play the hand you were dealt. You can’t just fold it,” said Renie.
ACCEPT the challenge! OF A LIFETIME CHALLENGE WALK is a two-day, 30-mile journey through the beautiful Challenge 2010
Brandywine Valley and historic Philadelphia. Register
today to walk or take part as a one-day volunteer or a two-day crew member. Visit walk4MS.org for more information and to
FUNDRAISING
Chapter honors Blue Cross CEO The Greater Delaware Valley Chapter will honor Joseph A. Frick, President and CEO of Independence Blue Cross, with its highest honor, the 2010 Hope Award for philanthropic service and community leadership at the MS Dinner of Champions on October 22.
In addition to recognizing the contributions of local leaders, this fundraising event is pivotal to the Joseph A. Frick, National MS Society’s President and CEO vision of creating a of Independence world free of multiple Blue Cross sclerosis. The dinner is expected to draw more than 600 guests to the Crystal Tea Room in Philadelphia, with a goal of raising $550,000. Past Hope Award recipients include David L. Cohen, Nicholas DeBenedictis, the late G. Fred DiBona Jr., Rosemarie Greco, Bob Hall, Larry Kane, Eric Lindros, Warren V. “Pete” Musser, Joe Paterno, Ed Rendell, Mark S. Schweiker and Ed Snider. Co-chairs of the 2010 event are David L. Cohen, Larry Kane, Ira Lubert, the Hon. Nicholas Maiale and Judith Spires. For MS Dinner of Champions tickets, please call 215-271-1500.
register, or call 1-800-883-WALK. TOLL FREE NUMBER 1 800 548 4611 15
FUNDRAISING
MUD RUNNERS GET DIRTY FOR MS New event is tremendous success in Newtown Square, Pa. Runners of all skill levels joined together to experience an unforgettable day of fun at the first annual Mud Run, benefiting the National Multiple Sclerosis Society. Hundreds of spectators watched as 939 participants ran, jumped and climbed their way through 6.2 miles of mud on June 12 at the Ellis Preserve and Marville Properties in Newtown Square, Pa. This event brought out a new and unique group of runners. Military, police officers, fire fighters, fitness groups, corporations, college students and groups of families and friends prepared themselves for this test of strength and endurance in the weeks leading up to the event. The determination to finish the course was seen on every runner’s face, which made this event even more rewarding for all involved. Mud Run participants climbing the wall
With Mud Run staff ambitions set high and 80% of participants running in a Society
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event for the first time, the event surpassed the $110,000 goal and raised more than $199,200 for the Greater Mud Run participant at the Delaware final obstacle Valley Chapter. To participate in the event, all runners were required to raise at least $100 to help support the mission of the Society. More than 200 volunteers helped throughout the 25-obstacle course, which contained boot camp-style obstacles that were surrounded by or consisted entirely of mud. Favorites of the day included Mine Field, Low Crawl and Log Walk. But it was the Mud Pit at the end of the course that got participants really dirty for the cure. The National MS Society worked in conjunction with Two Circles, organizer of premier events including the Dallas/Fort Worth Mud Run, which celebrated its 10th anniversary last fall. With the help of the Society’s Delaware and Central Pennsylvania chapters, runners were recruited from the Greater Philadelphia, Southern New Jersey, Lehigh Valley, Delaware and Central Pennsylvania areas, as well as through other fundraising events.
As extremely muddy runners crossed the finish line, they had pictures taken and headed over to the festival area, which included food, beer and sponsor tents. The Newtown Square Fire Department had the fun job of hosing down runners as they laughed and joked about their experiences in the mud. With the success of this new Society campaign, Mud Run 2011 registration opened the day after the event and is gaining larger awareness than any first-year campaign has for the Society.
JOIN THE FUN NEXT YEAR Register or find out more at MudRunPHL.com, or save the date to cheer for the runners on June 11, 2011.
FUNDRAISING
The first-ever spectators corral was a unique spot for family and friends to watch their loved ones slip and slosh their way through the obstacles while they enjoyed music provided by media sponsor 94WYSP and local food vendors.
(Left to right) Mara Bloom, Hunter Reese, Sean Poulton and Andrew L. Fernandes, III with #55 Danys Baez.
READaTHON is a hit for 17 MVP kids The National MS Society honored 17 elementary and middle school students who each raised $500 or more in the annual MS READaTHON at an MVP Awards Program at Citizens Bank Park. Four students who each raised $1,000 or more also had the opportunity to meet Philadelphia Phillies pitcher Danys Baez. The MS READaTHON encourages children to read as many books as they can during a fourweek period to raise funds for the National MS Society. This year, 45 area schools participated in the MS READaTHON, raising $103,000. These funds are used to provide programs, services and research for 13,000 area families living with MS.
Mud Run team at the finish
Hunter Reese, the top MS READaTHON fundraiser, raised $2,300 for people living with MS. He is pictured here with other students who raised $1,000 or more. TOLL FREE NUMBER 1 800 548 4611 17
FUNDRAISING
MS HITS CLOSE TO HOME FOR TV ANCHOR Vaughn dedicates time and energy to MS Leadership campaign
R
ob Vaughn learned the worst that MS can throw at a family in 2006, when new lesions on his sister Pam’s brain caused a severe and rare form of dementia. “The whole family was in crisis,” said Vaughn, a popular TV personality for WFMZ in the Lehigh Valley. “She couldn’t care for herself anymore.” Facing uncharted territory, Vaughn turned to the National MS Society for support. “We really appreciate the help the Society provided,” he said. “They gave us a wealth of advice and materials, steering us in really positive directions to find help and understanding of the disease.”
Rob Vaughn, WFMZ Anchor
He took over his sister’s financial and medical affairs and took in his nephew after Pam moved to Florida to be cared for by their parents. Two years later, when the chapter asked for Vaughn’s support of the new Lehigh Valley MS Leadership Class, he didn’t hesitate. “I was glad to jump in with both feet because I think the Society does really good work,” he said. He took on the role of chairman of the corporate fundraising campaign and joined the first class himself, raising $3,000 to be the class’s third-highest fundraiser. Many of 18 JOIN THE MOVEMENT: nationalMSsociety.org/pae
his friends knew about his family’s struggle with MS, and once they heard about what the Society does, they were happy to contribute, he said. In his continuing role as the class’ chairman, Vaughn takes pride in encouraging others to get involved in the MS Leadership Class too. “The Leadership class is a real opportunity for someone to make a difference in the lives of other people,” he said. “You can talk to people you know who are charitably minded people, and in very short order and without any difficulty, you can make a real difference by bringing in substantial dollars to help the Society.” The Lehigh Valley is a great fit for a program like the MS Leadership campaign, Vaughn said. “People really do seem to have community spirit and want to help,” he said. “They sense that they can make an important contribution, even in economic times like these.”
The Lehigh Valley MS Leadership Class is now taking applications for 2010 honorees. The ideal candidate is an upwardly mobile business professional in the Lehigh Valley. We ask each honoree to raise $1,000 through a special gifts campaign for the National MS Society, and many participants raise even more. To nominate yourself, a friend, family member or colleague, visit http://main. nationalmssociety.org/lvleadership or call Judi Simmons at 1-800-548-4611.
Many thanks to all of our volunteer fundraisers who are helping create a world free of MS.
(Left to right): Kristin Marnie (Society staff), Steven Petkovic, Jennifer Fogel, Ron Dorsey (front), Robert Rosenberg (back), Meghan McCabe, James Rainey, Lori Copestick, Katie Clancy
Participants in SPIN, a nonprofit social service agency that supports individuals with mental, physical and sensorial disabilities, raised $83 this summer through a soft pretzel sale at the Norcum Community Center in northeast Philadelphia. The pretzels were donated by Thorne Green, owner of A Taste of Philly in Dresher, Pa.
They held the fundraiser as their final project in a course that emphasized giving back and educating the community that people with disabilities have a lot to contribute, said instructor Katie Clancy. Class members considered a range of projects and causes, but ultimately were inspired by a member of the class whose sister has MS, she said. Ellena Kirschbaum and volunteers at the Pocono Speedway raised $3,000 by volunteering for the Poconos 500 on June 4, 5 and 6.
FUNDRAISING
Community fundraising all-stars Volunteers from LSI helped residents of Phoebe Home, a nursing home in Allentown, Pa., raise $400 and MS awareness through a “Rollathon.” As part of LSI Volunteer LSI volunteers Day, 39 volunteers push Phoebe Home pushed residents residents in the around the facility’s Rollathon. grounds, followed by refreshments, a presentation and entertainment. Altogether, 156 residents, volunteers and Phoebe staff were involved in this special event.
South Jersey lifeguards raised $4,000 in July to benefit the Society through the 17th Annual Upper Township Beach Patrol MS Six-Mile Bay Row. Crews of lifeguards rowed Van 17th Annual Upper Duyne surfboats six Township Beach Patrol miles in the back bays MS Six-Mile Bay Row near Strathmere, N.J., with the Deauville Inn packed with hundreds of fans and supporters of their favorite crews. TOLL FREE NUMBER 1 800 548 4611 19
TOP 5
tips for finding a job Finding a job in this economy is a difficult task. It can be even harder if you have been out of the work force for an extended period of time and/or have any disabilities. That’s where the Greater Delaware Valley Chapter’s MSWorks service comes in. Employment Services Manager Christina Forster, MA, CRC, is available to help you with every step of the job search process, including résumé development, practice interviews, career exploration, job search techniques and more. Here are her top five tips for finding a job.
1. Know yourself. This tip may seem
obvious, but many people start a job search without any idea what they are looking for and what they can offer. Think of all the skills you have to offer a potential employer and how they apply to the position for which you will apply. Are those skills transferrable to other industries as well? You should also know what kind of position you’d like to hold. You may know that you want to do something in the health-care or construction industries, but what specifically would you like to do? Figuring it out before searching for jobs will save you a lot of time.
2. Develop your résumé. The key to getting
a call back for an interview is a good résumé. Forster’s advice is to tailor your résumé for the job you’re applying for. Don’t just send the same thing to every company. Each employer is looking for different skill sets and experiences. Read the job description thoroughly to find out what skills, education and work history the
20 JOIN THE MOVEMENT: nationalMSsociety.org/pae
employer is looking for. Highlight all of the ways you fit their description in your résumé. Include volunteer work and the skills needed to complete that work in your job history if it has been a long time since you have had a paying job.
3. Network. According to Forster,
networking is one of the top ways to find employment. Sometimes getting a job is about who you know, she said. You can do this online with sites like LinkedIn.com, specifically for professional networking, and Facebook.com, the largest social networking site. If you’re not comfortable with creating a public online profile, you can network anywhere you go just by striking up a conversation. Attend business card exchanges and networking happy hours every chance you get.
4. Know where to look for a job. Forster
recommends starting at MSWorks.org. The site has links to companies that are currently hiring, as well as links to various job search sites. Some of the sites are specifically catered to connecting people with disabilities to accommodating companies. If you don’t have Internet access, Forster suggests you go to your local public library to use their computers or take advantage of the services offered at CareerLinks centers and state vocational rehabilitation centers.
5. Keep at it. Especially in this economy, it
MSWorks doesn’t stop at helping you find a job. The service is also available to help our members with job transitions, Social Security Disability issues, disclosure, advocating for accommodations and so much more.
NEWS
can take weeks or months to land the job you’re after. It’s important to stay positive. Social supports such as Social Security Disability Insurance are a last resort, not a back-up plan when the employment market looks bleak. Forster said she always tells people to “keep plugging away.” Searching for a job is now your full-time job, she said. And if you need help with any part of the process, take advantage of the chapter’s MSWorks services.
To learn more about this service, contact Christina Forster at 1-800-548-4611, ext. 141, or visit MSWorks.org.
INGLIS RECEIVES SOCIETY DESIGNATION
I
nglis House, which provides programs and services for people with physical disabilities, has been designated by the National MS Society as a Center for the Promotion of Excellence in Long-Term Care. The Society recognizes community-based programs and facilities that address the longterm care needs of people with MS as an integral part of their mission. Nearly half of the 297 residents at Inglis House, a skilled nursing facility in Philadelphia, have multiple sclerosis, as well as hundreds of Inglis consumers living independently in the community. They receive consumer services including community employment, adult day care, care management and accessible housing. Besides serving a significant number of people with MS, Inglis House also has a strong working relationship with the Greater Delaware Valley Chapter and currently has 40 staff members enrolled to receive recognition as MS Certified Nurses and Certified Specialists (licensed therapists) from
National MS Society staff present Inglis House with the designation as a Center for the Promotion of Excellence in Long-Term Care: (left to right) Karen Mariner, Gavin Kerr, Timothy Murphy, Ellen Mitchell, Tami Caesar and Kathie Cronk the Society. Inglis House engages in a range of activities to promote excellence, serving as a site to develop models of innovative care and providing leadership in disseminating best practices for providing MS care. Inglis Foundation joins eight other programs around the United States that have received this designation, including Good Shepherd Rehabilitation Hospital in Allentown, Pa. TOLL FREE NUMBER 1 800 548 4611 21
ADVOCACY
MS Activists make voices heard
T
he highly anticipated MS Lobby Day was a complete success. Activists met new people from other parts of New Jersey, had an opportunity to speak with legislators and had the chance to witness and listen to what legislators are doing for the community of people living with disabilities. The MS activists were pleased to have 10 elected officials and several government officials come to speak with them. Officials included Assemblymen Herb Conaway Jr., Anthony M. Bucco, Federick Sclera and Louis Greenwald; Assemblywomen Charlotte Vandervalk, Pamela Lampitt, Mila M. Jasey and Cleopatra Tucker; Senators Diane Allen and Fred Madden; and government officials Joseph Amoroso and Pamela McCrory. Assemblywoman Vandervalk surprised the activists by disclosing that her son has MS and that he is her main inspiration for her fight to provide housing for people with disabilities. She also informed attendees about several new housing projects, including a new building containing 40 units which will be built primarily for people with disabilities in Bergen County.
Furthermore, Assemblyman Conaway emphasized that On the bus to Trenton, he wants to make N.J. for Lobby Day 2010 sure that the healthcare system works for everyone. As he answered questions and talked with the MS activists, Conaway became interested in the vast difference between drug 22 JOIN THE MOVEMENT: nationalMSsociety.org/pae
tier co-pays. He wasn’t familiar with the issue and assured the attendees that he would look into it. Moreover, many activists were pleased to hear from Senator Fred Madden about his approach to legislation. Madden said that BREAKING NEWS: each year, he tries to pick a disease Senator Fred Madden or an organ that is introduced the New impacted by illness, Jersey Multiple educate himself about the condition Sclerosis Task Force and work to make Bill (S2212) on August positive change for 23, 2010. For the people with that condition. He said latest information, visit he will concentrate MSActiveNJ.org. on developing legislation to provide support for people living with MS and funding to help find treatments and a cure. The activists also learned about current and prospective programs and services in New Jersey from Joseph Amoroso, administrator of information and assistant services of the Division of Disability Services (DDS). He addressed disability parking issues, saying the government was trying to place tighter limits on the number of tags issued, and handed out copies of “New Jersey Resources 2010.” To receive a copy of this reference book, which provides information about various resources available in New Jersey for people with disabilities, call DDS at 1-888-285-3036, then press “2” and “0” in the menus. All in all, MS Lobby Day was a huge success. Several legislators, including Madden and Greenwald, praised the MS activists’ efforts
Do you want to: n get experience in grant writing or project management?
Volunteers
Beef up your resume as a volunteer
n enhance your customer service skills? Pamela McCrory at Lobby Day 2010 and reported they were doing as much as they could to provide funding for the community of people living with disabilities. The activists’ hard work and determination to live life without letting MS affect them was inspiring, Greenwald said. And he and other legislators all placed heavy emphasis on encouraging people with MS to get involved in the political process and let their elected officials know when they need help. Contact the National MS Society at 1-800-548-4611 if you have any questions or concerns pertaining to: n Assemblywoman Charlotte Vandervalk’s housing projects n Assemblyman Herb Conaway’s plans to research the drug tier issue (see next page) n Senator Fred Madden’s plan to focus on multiple sclerosis n Joseph Amoroso’s plan to deal with handicapped parking issues and the New Jersey Resources 2010 Guide n How to become an activist for MS
n keep your administrative or bookkeeping skills fresh? Then look no further than the Greater Delaware Valley Chapter. We have a wide range of volunteer opportunities available for professionals of every level and industry. In this difficult economy, it’s more important than ever to keep your skills and resume current. Plus, volunteering is a great way to learn new skills that can help you make the transition into a new career. Get started by filling out our volunteer interest survey at www.surveymonkey.com/s/ GDVvolunteersurvey, and visit http://main. nationalmssociety.org/volunteer to see some of our open volunteer positions.
New focus for chapter programs The Greater Delaware Valley Chapter is taking a more community-based, grassroots-driven approach to the educational programs we provide. What does that mean for you? More resources for enriched programs at a self-help group near you, more teleconferences that make it easy to learn from the comfort of your living room and more access to programs being held by our partners in your community. We’ll be able to devote the money we save on big hotels and meeting venues to funding research and direct services – investments that will help make your life better now and in the future. TOLL FREE NUMBER 1 800 548 4611 23
ADVOCACY
MEET YOUR LEGISLATOR Assemblyman Herb Conaway Jr., MD New Jersey District 7 What are your legislative interests and top priorities? My top priority is advancing health information technology acquisition in physicians’ offices and also in the hospital system so that we can make the delivery of high-quality health care more efficient, both in terms of cost and more importantly, in terms of good outcomes for patients. We know that electronic medical records and the transfer of information does result in better care coordination. If you have a complicated medical condition such as MS, where your care is spread among several different kinds of specialists, care becomes even more critical and a paper-based system doesn’t manage that very well. That’s exacerbated by the fact that you don’t have the specialists you need within a single group, so having electronic medical records with the appropriate specialist and having that available at the time that it’s needed is critical. We’re always concerned about access to care as another important issue. We very much need to reform and enhance the access of individuals who don’t have insurance or don’t have steady access to insurance to improve that state of affairs for them.
24 JOIN THE MOVEMENT: nationalMSsociety.org/pae
What was your experience at our MS Lobby Day in Trenton? I was very impressed to hear the perspectives of people living with MS. One thing I took away was that when we talk about housing needs and the way in which our housing dollars are distributed among populations of need, I was surprised at the sort of lopsided treatment, or the lack of balance as regards to recipients of that aid. We need to look at that clearly to see how we can assist people who have this disease. The other issues were around medications and medication access. I was not surprised to hear they were expensive. I was surprised to hear that it seems there’s discriminatory behavior by insurance companies with respect to those medications. What legislative avenues do you think may be available to address this issue? Some time needs to be taken to explore that more fully. You always think that when medications are tiered, you have acceptable alternatives to treat a certain condition in the lower tiers. For blood pressure or arthritis medications or any number of chronic conditions where there are multiple medications, tiering those, I suppose, makes sense. But when you are tiering medications where there are not a lot of alternatives, it strikes me as not being fair. What I would want to know is: are there acceptable alternatives for medicines that are now in the fourth tier? If
What’s the best way for constituents to work with you? For myself, and I think that goes for most legislators, the folks who are living a situation are always going to know more about that situation than the legislators with whom they
Legislation proposes capping monthly drug costs MS places a heavy burden not only on the finances of people affected, but also on their quality of life. The disease’s costly therapies and medication often force people to live from paycheck to paycheck and make impossible choices among the things they want and need. If this sounds familiar, we need to hear from you. The National MS Society needs your support to pass the Affordable Access to Prescription Medications Act, a bill designed to give some financial relief for people living with MS. Of particular concern is the so-called “fourth tier.” Four out of the 12 drugs commonly categorized in this most expensive copayment tier are drugs for multiple sclerosis. Drugs on this tier can cost consumers up to eight times more than generic drugs, three times more than preferred drugs and nearly twice as much as nonpreferred drugs. The Affordable Access to Prescription Medications Act would cap monthly
may need to interact. They need to be a source of information and bring forward suggestions about the world as they would like to see it, so that we can then fashion legislation to make the change required. There’s nothing like personal experience and living the situation to sharpen the mind and enhance efforts to find solutions. To the extent that solutions can be put together and be presented to those of us who may be called upon to enact legislation, I can’t tell you how helpful that is. We’re going to have to work together to think about acquisition of drugs or things we can do to enhance care coordination models.
Advocacy
not, the question ought to be: is it appropriate for those medicines that don’t have reasonable alternatives – but are absolutely necessary for people to treat their disease and have a decent quality of life – to be in a fourth tier, or should they be in the first tier?
prescription drug costs; allow exemptions for fourth-tier specialty drugs, require Medicare to study the impact of drug cost-sharing and potentially lower co-payments for up to 10% of Americans with the highest prescription costs. If you feel overwhelmed by the monthly cost of your disease-modifying drugs, contact the Greater Delaware Valley Chapter to share your story with us. We want to create profiles on everyone affected by fourth-tier prescription drug co-payments. You can submit your story to Jennifer Kelley at 215271-1500 or jennifer.kelley@pae.nmss.org. Also, be sure to contact your legislators to tell them your story and that it is necessary to pass the Affordable Access to Prescription Medications Act. Legislators need to realize that the out-of-pocket expenses for fourth-tier drugs are a burden to the hundreds of thousands of people living with MS every day. You can find out who represents you at www.Congress.org. Every day, we are fighting to address the challenges of everyone affected by MS, but we cannot do it alone. Join the movement today! TOLL FREE NUMBER 1 800 548 4611 25
NEWS
Lehigh, Jefferson recognized for quality care The Greater Delaware Valley Chapter is pleased to welcome the first MS centers under new affiliation guidelines with the National MS Society. This affiliation indicates that Thomas Jefferson University Hospital and the MS Center of the Lehigh Valley have met the highest standards for comprehensive MS care.
Society staff recognizes the MS Center of the Lehigh Valley as an MS center affiliate. From left to right: Karen Mariner, Jess Dalton, Jerry Werner, Dr. David Jones and Tami Caesar
“It’s really about providing resources for the continuum of multiple sclerosis,” said Karen Mariner, MSS, the chapter’s vice president of services and community outreach.
The process has allowed for unique and exciting collaborations, she said, such as a partnership between Lehigh Valley Hospital and Good Shepherd Rehabilitation Hospital to form the MS Center of the Lehigh Valley. The two hospitals share many of the same patients, said Dr. David Jones, director of the MS Center at Lehigh Valley Hospital. When he joined the hospital two years ago, it made
26 JOIN THE MOVEMENT: nationalMSsociety.org/pae
sense to build on the existing relationship between the centers and, ultimately, make it official through affiliation with the Society. “How do we help the patient who’s limited by fatigue or cognition or depression access the services they need to be all they can be?” Jones asked. “The idea was, if we could pool our resources, we could do a better job of taking care of the whole individual.” Staff from Lehigh Valley and Good Shepherd meet once a month to discuss shared patients who may need additional medical or rehab attention, he said. The collaboration also has allowed them to cut the recovery time for people experiencing MS exacerbations. Rather than admit them first to Lehigh Valley for steroids and later to Good Shepherd for physical therapy, Jones and his colleagues admit some patients directly to Good Shepherd for both. Jones and Jerry Werner, director of Good Shepherd’s MS Wellness program, also have discussed collaborating on rehabilitation research, developing medically monitored exercise programs at each hospital and developing an MS boot camp to give their patients access to all the specialists they need in a short period of time. Jones hopes Lehigh Valley and Good Shepherd can act as a laboratory for creating a better MS center. “It’s still a work in progress,” Jones said of the collaboration. “This is the beginning, not the end. “
MS center affiliation To become affiliated with the Society, MS centers must: n have a leader with breadth and depth of experience in MS, preferably an MS fellowship n conduct MS research n have an MS-certified nurse n provide social workers, counselors and other support staff to address the psychosocial issues related to MS n ensure that uninsured or underinsured patients have access to the same specialists as patients with private insurance or Medicare n refer patients to specialists who understand MS, such as neurological physical therapists n have an ongoing relationship and frequent communication with the Greater Delaware Valley Chapter Applications are reviewed by local MS specialists on the chapter’s clinical advisory committee, as well as a national review committee.
GADGET CORNER: The Illustrated Guide to Assistive Technology and Devices: Tools and Gadgets for Living Independently
Gadget Corner
Learn how to build your comprehensive care team. Check out our comprehensive care team Webinar series at http://main. nationalMSsociety.org/rec
Celebrate the 20th anniversary of the Americans with Disabilities Act by checking out a book that explores the universe of assistive tools available to help people with disabilities remain part of the fabric of our community. The Illustrated Guide to Assistive Technology and Devices, by Suzanne Robitaille, is a practical guide that looks at the use of assistive technologies and assistive devices to help people with disabilities perform functions that otherwise might be difficult or impossible. These include mobility devices such as walkers, wheelchairs and mobile vans; as well as hardware, software and peripherals; talking ATMs; and strobe light alarm systems. Featuring 100 black-and-white photographs, the book includes real-life examples of how people with disabilities are successful utilizing assistive technologies, and it presents strategies for dealing with the emotional issues related to using these tools. Available at Amazon.com; $13.57.
TOLL FREE NUMBER 1 800 548 4611 27
FACE OF MS
Face of MS: Sean Taylor
The Taylor family (clockwise from top left): Sean, Rick, Patty and Ryan
Sean Taylor is like any other 15-year-old – he likes to hang out with his friends; run cross country; fish and snow ski with his family; and study hard to get good grades at Cherry Hill East High School. He also is one of 10,000 American children living with MS. Soon after his diagnosis five years ago, he was inspired to ride in Bike MS: City to Shore Ride, where he has become a celebrity. His early rides generated news coverage, special recognition as a Flyers community teammate and a new bike, thanks to Danzeisen and Quigley, a Cherry Hill, N.J. sports specialty store. He and his mother, Patty, spoke with MSConnection about their experience with MS.
How were you diagnosed with MS? Sean: I just started getting flares. I got wobbly and went to the hospital. Patty: Our first experience was when he was 7 and he had what I thought was GI virus over the weekend, but it progressed. On Monday morning, he fell out of bed, he wasn’t moving one side and he started slurring his speech. I couldn’t tell what was happening, but it was obvious something was wrong. When we got to the emergency room, they were giving him aspirin, thinking he might have had a stroke. He had a CAT scan and an MRI and the neurologist said he was going to be all right; he had ADEM, an inflammation in the brain triggered by a virus. Sean was in the ICU; he was really bad, but as the steroids kicked in, he got better. Three years later when he had the same sort of symptoms – dizziness, unsteadiness – we 28 JOIN THE MOVEMENT: nationalMSsociety.org/pae
didn’t think twice about it – we took him back to CHOP and ran another MRI and he was diagnosed with MS. We went home and just digested it all. In July, he had another flare on a really hot day and ended up back in the ER, and that’s when the neurologist said it’s time to start treatments. He has been on Avonex five years, and hasn’t been in the hospital since that episode. What have the past five years been like for you and your family? Sean: Pretty easy. I haven’t really had any problems. The only thing I have to do is get that injection every week and an MRI once a year. Patty: Initially we were scared. As a pediatric nurse, I didn’t know anything about MS and thought like the rest of the world that only adults got MS. We were, of course, nervous about his future. When Dr. Amy Waldman
Tell me about the ride and what it means to you and your family?
We’re less nervous than we were at the beginning, but during the summer, I try to keep him cooped up in the house in the air conditioning. He was supposed to run seven miles today for cross country and I negotiated that he would run it inside on the treadmill rather than outside in the heat.
Patty: When you’re riding, you’re riding with two groups of people: the people out purely for a ride – the heavy duty bikers who don’t have a connection. Then there are people like us who are casual riders who are doing it because we have a loved one with MS. This ride is so great, with 25, 50 and 75-mile options. So when we first started, we did the 25 because we weren’t quite sure how we would do. This year we’ll do 50. My mom’s done it the past four years. Every time we tell somebody about it, they join our team.
What’s your attitude or philosophy about MS? Patty: We’ve always been so positive about it, not wallowing in it but doing something positive about it – like the bike ride. We’re not letting other people do it for us; we’re getting out and doing it on our own. How did you get involved with City to Shore? Sean: My mom’s friend from work had been riding it. One year she rode for me, and the next year, I wanted to do it. We’ve raised about $40,000 as a team. Patty: He’s always said that he rides for those with MS who can’t ride. We’re riding for other people with MS too.
Sean: It helps to fundraise a lot and hopefully eventually find a cure for MS. I like it a lot.
FACE OF MS
walked into the hospital room and we were just devastated, she sat us down and said this is not life threatening. It might be life altering, but this is what it is. She’s been there every step of the way.
To me, it’s overwhelming when you’re in the midst of it with all these riders and raising all this money going pretty much to research and finding a cure -- or a medication that wouldn’t have to be injected every week. Describe what it’s like seeing your child fight this battle – and do it so well. Patty: We’re extremely proud of Sean and how he’s handled himself. At 10, that’s a lot to digest. Over the past few years, he’s just done so much and so well and doesn’t ever let it get him down. He doesn’t use it as an excuse to take on less work. He does great in school, takes honors classes, he’s very active. He just doesn’t stop.
To make a donation to Sean or Team Taylor, visit http://main.nationalmssociety.org/goto/seantaylor. To ride with them or volunteer, visit MScycling.org. TOLL FREE NUMBER 1 800 548 4611 29
Symptoms
Use it, don’t lose it If you’re living with memory and learning problems as a symptom of your MS, you are not alone. About 50% of people living with MS are affected by cognitive dysfunction. But now there’s hope that your memory can be improved, just by engaging in mental activities like reading and writing. James Sumowski, PhD, Kessler Foundation, recently published results of a study comparing mental activity, brain lesions and memory problems in people with multiple sclerosis. “What we found is that persons with higher mental enrichment throughout their life were actually able to withstand more disease or brain atrophy without showing learning and memory problems,” he said. That means that taking part in mental activities can protect against cognitive problems, Sumowski added. Further studies are needed to pinpoint definitive techniques that could be used to improve memory, but he recommends reading, writing and activities that require problem solving.
30 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Reading the newspaper every morning would be a great start. And while you’re at it, try to complete the games in the back. Crossword puzzles, Sudoku and word jumbles are cognitively challenging games that can be found in most papers. Another very simple strategy is to practice recalling information by quizzing yourself. For example, if you need to make a grocery list, write it down and read it once. Then try to recall as much of it as you can. “If you quiz yourself on information, you’re much better able to remember later on than if you simply restudied it,” Sumowski said. He also suggests remaining employed for as long as you can, as doing your job is often a very cognitively challenging activity. Provisions achieved in the Americans with Disabilities Act require employers to make available reasonable accommodations to help people with MS remain in the work force. If are not working, you should try to remain cognitively active at your home. To anyone who thinks that these activities can’t help them, Sumowski says, “Why not remain cognitively active anyway? We know that it can’t do any harm, and it probably can do good.”
Learn more about this study and other memory studies happening at the Kessler Foundation by listening to our podcast at http://pae.podbean.com.
Enhance Vision’s Nemo Video Magnifier: Three levels of magnification (4.5X, 6X, 9X), six viewing modes, 4-inch viewing screen, 12 volt battery charging unit. Very light, 13 oz., easy to carry and use anywhere. Asking $425 (cost $850 new). Located in Havertown, Pa. Call Harry at 610-446-8798. Hoveround Power Chair: 3 years old, like new. Batteries and manual included. Asking $2,000 or best offer. Located in Philadelphia. Call Debra at 215-927-0548. Top of the line wheelchair: Less than a year old, used only three times. Converts into a bed. FREE. Located in Philadelphia. Call Linda at 215-760-3557 (evenings). Electric hospital bed: 2001 model, barely used. Plastic-covered mattress. FREE. Located in Maple Shade. Call Jean at 856-662-7629. Invacare MVT wheelchair: 6 or 7 years old, in great condition. Has 18” seat, all black canvas material. Does not include cushion. FREE. Located in Center City. Call Paul at 215-295-0295 (afternoons). Pheracycle 100 exercise bike: Motorized exercise bike for people in wheelchairs. Like new, used only three times. Made to help cut down on spasticity. Asking $2,500 O.B.O. Located in Pennsville, N.J. Call Mike at 215-378-4712. You will need a truck or large SUV for pickup.
Two Stannah 400 motorized stair lifts: 4 years old. Like new. Very lightly used and comfortable. Have wireless remote controls, swivel levers, directional controls, armrests, seat belt and five safety edges which immediately stops should the stair lift meet obstruction and folding chair. Asking $450 each (new $3,200 each), but negotiable. Located in Burlington, N.J. Call Robin at 609-577-7813.
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Beaver Hill Condominium: Excellent location directly across from Jenkintown commuter train station. Wheelchair accessible, widened doorways, strategically placed grab bars throughout bathroom. 1 BR, 1 bath, large den which can be used as a second bedroom, eat-in kitchen and terrace, wooded view. All appliances updated. Elevator building. Many amenities including heated outdoor pool, exercise room, social club activities, bus service to nearby shopping malls and to medical offices, etc. Buy or rent. Call Lydia at Quinn & Wilson: 215-885-7600. Image Wheelchair by Drive: Used, in good condition. Red body. Comes with charger and manuals. Will need a new battery. Will take best offer. Located in Mickleton, N.J. Call John at 856-562-1689. Golden Guardian Champion 2 Electric Scooter: 3-4 years old, runs great. Comes with batteries and manual. Suited for larger person, up to 350 pounds. Asking $100 or best offer. Located in Marlton, N.J. Call Ron at 856-983-4381.
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THANK YOU! Many thanks to the hundreds of cyclists and volunteers who made Bike MS: PA Dutch Ride a success in 2010 and over the past 23 years. Your dedication to this ride has moved us ever closer to our goal: a world free of MS. PA Dutch Ride 2010
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