MSConnection 2009 Issue 3

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Nancy’s House – A respite resourcePages 8-9

Team Tania reaches $1MPages 10-11

2009 scholarship recipientsPage 22

2009 Issue 3 Greater Delaware Valley Chapter

Self-help groupsPage 26-27

CONTINUED ON PAGE 6

Dive into new wellness programs for people living with MS.For years, the chapter has offered classes to help people stay physically fi t. Now, a new wellness programs manager is focusing on mental health and healthy living, as well.

“I want to encompass everything,” said Kimberly Stoeckley, a social worker, certifi ed personal trainer and group fi tness instructor. “We want to serve as many people as we can, and if we can’t serve them, fi nd resources that will be able to help them.”

She has started by developing three new wellness series to complement the chapter’s existing yoga, aquatics and strength/fl exibility classes.

N E W W E L L N E S S P R O G R A M S F O R N E W P R I O R I T I E S

JOIN THE MOVEMENT: nationalMSsociety.org/pae2

National Multiple Sclerosis SocietyGreater Delaware Valley Chapter1-800-548-46111 Reed Street, #200Philadelphia, PA 19147

ChairmanJeff A. Petty

Vice ChairmenLarry KaneBrian DiDonato

Chapter PresidentTami Caesar

MS stops people from moving. The National MS Society exists to make sure it doesn’t. We do this through our home offi ce 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.

©2009 National Multiple Sclerosis Society, Greater Delaware Valley Chapter

MSConnection welcomes letters to the editor. Send letters to [email protected] 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.

Vice President, CommunicationsKevin Moffi tt

MSConnection EditorAnne Krishnan

A Message from John ScottIt is a great pleasure to welcome Tami Caesar as president of the Greater Delaware Valley Chapter. I have known Tami for many years and have found her to be a truly inspiring leader in the movement to create a world free of MS. Her intelligence and vitality will serve people living with MS in our chapter area extremely well. Tami was selected following an extensive national search led by Society

staff and a search committee that included members of the chapter board. For more information about the incoming chapter president, please see the story on the opposite page.

As I make the transition to my new role as the executive vice president for our region, which includes eight neighboring states, I will be working closely with Tami and the other chapter presidents to foster collaborations and better sharing of resources to enhance client services and programs and increase funding for critically important research.

While I am excited about the new position, I will miss the frequent interactions with so many of you who take an active role in the activities of the chapter.

We have been successful in both fundraising and providing assistance because of the constant feedback from you. However, our work is not done and there is so much more we need to be doing – together. For the success of our chapter to continue, we need you to continue to reach out to staff and trustees to talk about the many challenges our community faces.

Finally, I thank you for your past support and look forward to seeing you at events in the months ahead.

Sincerely,

John H. Scott

John H. ScottRegional

ExecutiveVice President

TOLL FREE NUMBER 1 800 548 4611 3

The incoming president of the Greater Delaware Valley Chapter of the National MS Society may be new to the chapter, but she is very familiar with the movement to create a world free of MS.

“I grew up with the disease,” Tami Caesar recalls, explaining that her paternal grandmother lived with MS for most of her life and that she also had two other close relatives who were diagnosed with the disease. “MS has always been part of my family.”

After seeing fi rsthand how the Society helped her family members, Caesar jumped at the chance to join the operations department of the Greater Washington Chapter’s Seattle offi ce. Almost two decades later, making life better for people with MS has become her life’s work, most recently as the president of the Mid-Florida Chapter.

“I became so wrapped up in it,” she says. “I started working for the Society just two years before Betaseron became available and people living with MS started to experience some real progress.”

The Society’s assistance to people and families living with the disease has evolved, as well. The Greater Delaware Valley Chapter’s record of program and services excellence is one of the many reasons Caesar was interested in becoming chapter president after John Scott’s promotion to regional executive vice president for the new mid-Atlantic region.

She also was attracted by the opportunity to lead the chapter as it makes the shift to a regional model, something she pioneered in the Mid-Florida Chapter.

In addition to achieving many fundraising and program delivery milestones during her 10-year tenure in Florida – including tripling chapter fundraising and increasing participation in community programs by over 50% – Caesar also helped launch an initiative to increase cooperation and collaboration among chapters in the southeastern US. This effort became a model for the regionalization of the entire National MS Society.

“In Florida, we realized that to achieve everything we need to, the chapters have to work together more often. For clients, that will ultimately mean expanded access to programs and services from chapters throughout the region,” Caesar says, adding that the economic climate makes the need to share and stretch resources more pressing than ever.

In addition to the economy, Caesar acknowledges that she will face a number of other challenges as she takes over the reigns of the Greater Delaware Valley Chapter on October 1. However, as a self-proclaimed foodie, she’s looking forward to relieving stress at a well-known Philadelphia landmark. “When I’m not working, I plan to spend a lot of time at Reading Terminal Market. I just love that place!”

New chapter president has long history with the Society and MSTami Caesar tapped as president after extensive national search

Tami CaesarChapter President


SMOKING MAY WORSEN MS

A new study indicates that MS disability progresses more quickly in smokers, and that quitting may delay disease progression.

Harvard researchers found

that current smokers had signifi cantly worse clinical disability scores than ex-smokers or people who had never smoked, and that smokers were more likely to have a primary-progressive course of MS and more indicators of disease severity on MRI scans.

MORE EVIDENCE FOR MONO-MS LINK

A new study offers the strongest evidence to date implicating infection with Epstein-Barr virus as a trigger for multiple sclerosis.

The study shows “that people who are not infected with Epstein-Barr virus do not get

MS,” Harvard epidemiology professor Alberto Ascherio, MD, PhD, told WebMD. “All 100% of people who got MS in our study were infected with Epstein-Barr virus.”

The analysis showed about a 50-fold increased risk of MS among people with the highest levels of antibodies against Epstein-Barr, compared with those with the lowest levels.

BLOOD PRESSURE DRUG SHOWS MS PROMISE

A new study shows the inexpensive blood pressure drug lisinopril blocked development of multiple sclerosis in laboratory mice bred to develop the disease. When the drug was given to mice with full-blown symptoms of MS, it reversed their paralysis without affecting their overall immunity.

The researchers at the Stanford University School of Medicine found a link between the infl ammatory processes present in high blood pressure and MS. Their fi ndings suggest that a safe, inexpensive drug already in wide use for high blood pressure may have therapeutic value in multiple sclerosis, as well.

ADULT STEM CELLS PROMISING

A preliminary study has shown that stem cells obtained from a patient’s own fatty tissue may help improve symptoms in people living with MS.

Stromal vascular fraction (SVF) cells and other stem cells may be able to treat MS by limiting the immune reaction and promoting the growth of new myelin. All three patients who were given this treatment have reported positive results such as increased balance, reduction in spasticity and improved cognition.

VISION DETERIORATES EVEN WITHOUT SIGHT-RELATED SYMPTOMS

Researchers suggest that clinicians make a point of checking patients with MS for diminished vision even when the patients have not experienced any vision-related symptoms. A new study found that thinning of the retinal nerve fi ber layer, as measured by optical coherence tomography, occurs over time in the eyes of patients with MS, even without acute optic neuritis.

IN B

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Philadelphia women swim English Channel to raise money, awarenessThree Philadelphia women braved frigid water and jellyfi sh for the swim of a lifetime to help a friend who’s living with multiple sclerosis.

Tori DeLollo, Trista Felty and Kiersten Rosenberg swam the English Channel in June in honor of Lauren Schulman, a Villanova University swimming teammate who was diagnosed with MS in 2007.

“It was really incredible,” Rosenberg said. “It’s really hard to explain the feeling the entire time we were on the boat – we were there for a reason and a goal that we achieved.”

They swam the channel as a relay across the Strait of Dover, an 11-hour journey with Schulman in the boat cheering them on.

But the conditions were an even bigger challenge than the distance. The water was intensely cold, ranging from 54 to 60 degrees, and the swimmers were prohibited from wearing wet suits for the swim to be offi cially recognized.

Rosenberg said she’ll always remember the feeling when she climbed out of the boat and onto the French shore.

“It was a huge rush of emotion and excitement and accomplishment and exhaustion, all combined into one,” she said.

She said the women were heartbroken when they fi rst heard of Schulman’s diagnosis.

“All we wanted to do was make her better. Swimming the channel and raising money for research, is for now, our way of helping Lauren with this disease,” she said.

Rosenberg and her teammates raised about $11,000 through the swim to support research by the National MS Society.

Schulman was working long hours at a global business advisory fi rm in New York City when she learned she had MS. To someone so energetic and ambitious, the diagnosis was devastating, her friends said. Her life has been turned upside down, but over the past year she has recovered from many of the effects of her initial attacks.

“Although her life has drastically changed, she is still the same Lauren we’ve known for years,” DeLollo said. “She has shown us more perseverance and strength in this past year than any of us could ever imagine.”

Read a detailed account of the swim or make a donation at MSwim.wordpress.com.

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From left to right: Kiersten Rosenberg, Tori DeLollo, Lauren Schulman, Trista Felty


> DANCE THERAPY: This program can help alleviate fatigue and pain through relaxation exercises and can increase your awareness of your body as a whole. These classes also provide an opportunity to express your feelings about MS and receive support from other people experiencing similar symptoms.

> MUSIC THERAPY: Music therapy is about self-expression and connecting with others through music. The Joining And Making Music (JAMMSM) program includes singing, songwriting and other activities designed to enhance physical, cognitive and psychosocial functioning.

> PILATES: Pilates mat exercises focus on strengthening the core muscles from your shoulders to your hips. With patience and persistence, these exercises can build your core muscles to make it easier to move and lift your arms and legs.

The 10-week sessions will feature personalized attention by instructors who can modify their exercises based on the needs of individual participants and the class as a whole. The dance and music therapy instructors also are licensed counselors.

If the pilots are successful, Stoeckley hopes to train other instructors to spread the concepts into underserved areas of the

chapter. Already, she’s looking at expanding wellness programs into South Jersey.

Ultimately, she hopes to move past MS-specifi c classes by training instructors to integrate people living with MS into their mainstream offerings.

To that end, the chapter is beginning to train group fi tness instructors and personal trainers at fi ve local YMCAs about adaptive modifi cations for people with disabilities.

She also is beginning to identify fi tness centers that have the credentials and interest in adapting their programs and facilities for people living with MS.

“MS can be isolating,” Stoeckley said. “I would like to see community-sponsored programs that engage people living with MS in the community more than they are right now.”

Funding for these wellness initiatives was made possible, in part, by the generous contribution from a donor who wishes to remain anonymous.

Contact Kimberly Stoeckley at 1-800-548-4611 or [email protected] if you think your gym or fi tness center should be included on her resource list. Learn more about the program on the Web at http://main.nationalMSsociety.org/wellness.

WELLNESSCONTINUED FROM PAGE 1

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Kimberly Stoeckley


We’re bringing in the experts to offer a full day of wellness activities and education at the new Spring Wellness Symposium on March 24.

The Greater Delaware Valley Chapter will partner with the Heuga Center for Multiple Sclerosis to host the event at the Pennsylvania Convention Center in Philadelphia.

The Heuga Center is internationally recognized for its comprehensive programs that empower people and families living with MS to transform

and improve their quality of life.

Local people living with MS indicated in a recent needs assessment survey that strength and wellness were their No. 1 concern, ahead of fi nancial security, insurance coverage and prescription reimbursement.

In response, the chapter has replaced this fall’s Greater Delaware Valley MS Conference & Expo with the Spring Wellness Expo.

The day’s program will focus on thinking beyond fi tness and integrating wellness of body, mind and spirit into your daily life. The Heuga Center will present workshops on nutrition, spirituality and taking a practical approach to exercise, with take-home activities and tips on fi nding a fi tness program that works for you.

Stay tuned for more information in the mail and on our Web site, MSconference.com, and make plans to attend this exciting event this spring.

The Greater Delaware Valley Chapter of the National MS Society is a volunteer-governed non profi t 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 in November. This will be an opportunity for members to meet trustees and staff, including our new chapter president, Tami Caesar; hear about the successes and challenges of the past year; and be part of the required annual business meeting of the chapter. (As in 2008, we will conduct the election of trustees electronically in advance and will announce the result at the meeting.)

Members also can learn about the latest and most exciting developments in MS research in a presentation by Dr. Patricia O’Looney, the Society’s vice president of biomedical research.

Annual Meeting and Research Update Crowne Plaza Valley Forge • King of PrussiaNovember 12, 2009Check-in: 6 p.m.Dinner: 6:30 p.m.Meeting: 7 p.m.

For voting purposes, all attendees must register by calling 1-800-548-4611, ext. 263 or online at nationalMSsociety.org/pae.

Annual Meeting/Research Update Set for Nov. 12

NOTE: for those who cannot attend, a live Web cast will be available.

Spring Wellness SymposiumMarch 24, 2010Pennsylvania Convention Center

Featuring: The Heuga Center for Multiple Sclerosis

Learn more: MSconference.com or Heuga.org

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SAVE THE DATE for Spring Wellness Symposium



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Caring for an aging parent or chronically ill spouse or child can be mentally and physically exhausting. It can have lasting

health effects, as caregivers face increased risks of injury, illness and even premature death.

So who cares for the caregivers?

In the Greater Delaware Valley, it’s Nancy’s House, a comprehensive not-for-profi t program designed to meet the physical, emotional and practical needs of family caregivers. Nancy’s House is a “residential respite,” which means that caregivers are invited to come there for a two-night stay to relax, rejuvenate and fi nd support.

Nancy’s House held its pilot program for women caring for someone living with multiple sclerosis from June 17-19 in partnership with the Greater Delaware Valley Chapter.

Maria McCabe was among the fi rst group of

caregivers to participate. Her husband has had MS for all of their 18 years of married life and has used a wheelchair exclusively for the past decade.

“As a caregiver, I’m so used to feeling that someone else’s needs come fi rst and are more urgent – and they are,” McCabe said. “The idea of something being available to help me take care of myself was just so powerful.”

McCabe’s stay at Nancy’s House was “deeply nourishing and full of emotion,” she said. In addition to bonding with other caregivers and enjoying massage and yoga, she learned tools that she says have helped her re-center and regenerate her energy in daily life at home.

Nancy’s House is the vision of Elissa Lewin, a licensed psychologist who spent fi ve years caring for her father-in-law. The morning after he died in 2005, she realized she had gotten her fi rst full night’s sleep since he moved into her home.

Among the challenges mentioned most often by informal caregivers in a recent study, over half said they needed help fi nding time for themselves and nearly half needed help managing emotions and physical stress.

The stress and fatigue associated with being a caregiver increases people’s risks of heart disease, diabetes, high blood pressure and depression and suppresses their immune systems, making them more susceptible to colds, fl u and infections, Lewin said. In “The Cortisol Connection,” Dr. Shawn Talbott

New nonprofi t provides rest, respite for caregivers

Participants practice meditation


suggests that two good nights of sleep may do more for a caregiver’s overall health than a lifetime of stress management classes.

“Everyone says you should take care of yourself, but how can you, when you are so busy taking care of everyone else?” Lewin asked. “We will give you the break you need, the support you want and the encouragement to do what you need to do – for your loved one and yourself.”

Future retreats at Nancy’s House will focus on male MS caregivers and, as funding grows, people caring for loved ones with other diseases. The Society will underwrite the cost of the respite home care for MS caregivers, as well as the usual $25/night fee for guests, if the fee is a hardship.

In addition to the immediate benefi ts from a weekend at Nancy’s House, the program offers a unique long-term approach. Program participants can take advantage of a public forum for discussing caregiver issues, a secure forum for ongoing conversations with Nancy’s House professionals and phone and online

support groups. They’re also welcome to return every four months for another two-night stay.

Contact Malika Hook at 1-800-548-4611 to join the interest list for an upcoming Nancy’s House respite program.

BY THE NUMBERS:

A recent study of informal, unpaid caregivers revealed:

> 78% of informal caregivers are spouses, more than half of them husbands

> 12% of families have children providing some care

> 40% of caregivers reduced amount of time at paid employment due to caregiving duties

> 10% could not work at all because of caregiving responsibilities

> 90% said they were happy to help

> 80% were proud of the care they provide

WELLN

ESS Two solid nights of sleep

Assistance locating and paying for a home health aide for the person requiring care

Restaurant-style meals

Social support with other caregivers

Massage therapy, counseling and stress management classes

Caregiver education

Fun classes

A low-stress setting: the beautiful, 42-acre Elkins Estate, a yoga and wellness retreat in Elkins Park, Pa.

Nancy’s House provides:

> To learn more, visit nancys-house.org.


“As terrifi c as I feel about what we’ve done, the fun doesn’t last long enough,” said Team Captain Stacey Asbell. “We know there’s still MS, so we can’t completely celebrate yet.”

Still, there’s plenty to be proud of.

With more than 400 cyclists, TEAM TANIA is the largest friends and family MS cycling team in the nation, and only the second to reach $1 million.

The fact that Asbell has brought the team to this point in just 10 years makes the

accomplishment all the more impressive.

She had just started cycling back in 1999 when her new training partners told her about a ride called “City to Shore.” She decided riding the 100-mile Saturday route sounded like a good challenge and set it as her goal.

A coworker who saw Asbell’s fundraising fl iers asked if she knew that his wife, Tania, was living with MS.

“I thought, ‘That changes things,’” she said. “’This isn’t about a bike ride anymore. It’s something much bigger.’”

She and the coworker, Patrick Kincaid, gathered a few family members and formed a six-person team. Each year, the number of cyclists has multiplied, until TEAM TANIA hit

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Team raises $1 million through Bike MS

HELP T E A M T A N I A a n d o t h e r B i k e M S t e a m s r e a c h t h e i r g o a l o f a w o r l d f r e e o f M S V i s i t MScycl ing.org t o m a k e a d o n a t i o n t o d a y .

Just days after TEAM TANIA reached its goal of raising $1 million through Bike MS in June, team members upped their target to $2 million.

TEAM TANIA cyclists ride into Ocean City, N.J.


415 members and more than $240,000 in fundraising in 2008.

The team is the largest at Bike MS: PA Dutch Ride and runs neck-and-neck with several corporate teams at Bike MS: City to Shore Ride.

Asbell challenges other friends and family teams to set their goals high and join TEAM TANIA among the crowd of large corporate teams.

“The competition is motivating, but at the end of the day, we’re all in this for the same reason,” she said. “We want all teams to grow and raise more to support the National MS Society.”

One of the main keys to the team’s success is focus on the mission of the team, the ride and the Society.

“We talk a lot about Tania,” she said. For TEAM TANIA, City to Shore “has less to do with cycling and more to do with fi nding a cure for MS.”

A related key is keeping people coming back year after year. Being plugged into the mission encourages cyclists to return and bring others; veteran cyclists also are more likely to go

beyond the fundraising minimum.

The inspiration for TEAM TANIA’s goal was the Promise 2010 campaign, a national campaign aimed at raising $35 million for four targeted MS research areas. Asbell tracks her team’s fundraising carefully, and when the initiative was announced in 2005, she decided her cyclists could realistically raise $1 million by 2010.

TEAM TANIA hit its goal a year early.

“Truly, it’s just about connecting new people to the team, and the rest just happens,” she said. “An amazing spirit has developed among our team members.”

TEAM TANIA in 1999, its fi rst year

BIKE M

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MANY THANKS to the thousands of cyclists and

volunteers who participated in this year’s Bike MS events. Your dedication to the PA Dutch Ride and the City to Shore Ride are moving us ever closer to our goal: a world free of MS.

We’ll look forward to seeing you in 2010!


For Venessa Levin and Karyn Homka, Challenge Walk MS 2008 was a journey of awareness – about themselves and multiple sclerosis.

Both women had been diagnosed in their late 20s, Levin shortly after the birth of her son and Homka as she prepared to get married.

Several years later, they struggled with the same issues many people have after a new MS diagnosis – whether to go on MS drugs, the implications of each new MRI, unwillingness to burden their friends and family.

They hadn’t yet found an outlet that would allow them to take pride as people living with MS. Then they experienced Challenge Walk MS.

For Levin, the road to Challenge Walk began

with an assignment to her high-school class. As a part of asking her students to make a change in their own lives, she committed to working out each day.

Before long, she had decided to join her family at the fi ve-mile Walk MS at Ridley, an event she had avoided since her diagnosis in 2003.

From there, it was a logical progression to aim for Challenge Walk.

Homka’s path was different. She had taken part in the Walk MS event at Elmwood Park Zoo every year since her 2004 diagnosis, and was always interested in Challenge Walk.

After striking up a conversation with members of Team Ratty Shoes at the 2008 one-day walk, she decided to join their Challenge Walk team.

Homka and Levin had been high-school friends, but had lost touch after graduation. When Homka told a mutual friend she was trying Challenge Walk, she learned that Levin was doing the walk, too.

The women reconnected to train for the two-day, 30-mile event and compare their shared – and not so similar – experiences.

While Homka experienced seasonal relapses brought on by physical and emotional stress, Levin only had an initial episode of optic neuritis and was resisting the injected disease-modifying therapies. Homka convinced her she should give them a try.

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Team Two Step members at Challenge Walk MS 2008: from left to right, Eleni Kornblatt, Karyn

Homka, Venessa Levin and Laurie Van Dosen


“I had been enjoying not admitting I had the MS diagnosis,” Levin said. “If not for Karyn, I would never have gone on the treatments.”

And while neither woman hid her MS, initially they were both reluctant to don orange shirts to identify themselves with others living with MS on the second day of Challenge Walk.

But after experiencing the Candlelight Ceremony, they decided they were ready.

“They were like completion medals – we were so excited,” Homka said.

When the shirts were passed out, they were amazed at what they saw. Some of the older women who had been passing them on the road were wearing orange, too. It felt great to look around and see so many people doing so well, they said.

“Walking away from it, I felt accomplished,” Homka said. “I felt as though I had closed the book on something.”

“It was empowering,” Levin added. “It was nice to see so many people living with MS.”

Not knowing what to expect, both women had hesitated to invite their family and friends to make the physical and fundraising commitment to Challenge Walk 2008. But when they started talking about what they were

doing, friends and family members signed up to walk and volunteer anyway.

This year they’ve formed Team Two Step, and even more supporters are joining them for the 2009 event.

“Now I’m proud to have my friends do it,” Homka said. “I know they’ll have a good time.”

While some team members are worried about not meeting the $1,500 fundraising minimum, the captains aren’t concerned. They see their role as facilitators, helping their walkers reach their fundraising goals, but not pushing them.

Their motivation is to raise MS awareness and share the Challenge Walk experience with their friends and family, not to be the top fundraising team – although they were, as late as September.

“If you don’t meet the minimum, you can always still participate as a crew member or volunteer,” Levin said. “We think anything you can do is better than nothing.”

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EXPERIENCE CHALLENGE WALK MS for yourself on October 17-18! Register to be a one-day volunteer or take on more responsibility as a two-day crew member. Contact Kathie Cronk at [email protected] or 1-800-548-4611 to learn more.


People living with MS throughout the Greater Delaware Valley have turned to the National MS Society in record

numbers for assistance in these diffi cult economic times.

This heightened demand has prompted a re-evaluation of how the chapter’s services can be expanded and improved.

As a result, the chapter will be redesigning some of its services, particularly the therapeutic, transportation and incontinence supplies offerings, beginning in October.

The goal is to provide as many services as possible to as many people as possible, said Karen A. Mariner, MSS, the

chapter’s vice president of services and activism.

“We’ve done a good job providing a lot of service for a few people,” she said. “We want to expand to serve a lot more people.”

The changes also will increase the quality of care people living with MS receive.

For instance, modifi cations to the chapter’s physical therapy program will ensure that recipients see physical therapy professionals

who are trained and experienced in treating MS.

Previously, the chapter paid for home visits by a physical therapist who designed home exercise programs and performed medical equipment evaluations. Now, it will provide co-pay assistance for clients to visit approved rehabilitation centers and one home visit to train caregivers on correct lifting and transferring techniques.

In addition to connecting clients with experienced MS rehabilitation professionals, the change also means the chapter will be able to provide physical therapy services to an additional 75 to 100 people.

Another change affects the incontinence supplies service, which saw unprecedented demand in 2009, exhausting its budget just four months into the fi scal year and building a waiting list of 50 people.

Many incontinence issues are treatable, but people may be reluctant to broach the subject with their doctors. As a result, the program now requires a prescription to ensure the client and doctor have had that conversation and explored medical options

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Services modifi cations improve quality, access to care

We’ve done a good job providing a lot of service for a few people. We want to expand to serve a lot more people.

Physical therapy is a key service for

clients


that could greatly improve their quality of life. (See next page for more about treating incontinence.)

The move makes supplies available to more people who have no medical recourse for their incontinence issues and, combined with other changes, will allow 80 to 90 additional people to be served.

“In a lot of cases, people are going to need these supplies, but our concern was that we

were almost encouraging them to use supplies and not necessarily get this looked into,” said Kris Levine, neurology specialty programs coordinator at St. Luke’s Medical Center in Bethlehem, Pa., and a member of the services committee. “It was like putting a Band-Aid on things.”

Visit the chapter on the Web at nationalMSsociety.org/pae to learn more about the redesigned services offerings.

To the Editor:

Around the world and here in the United States, MS is being treated right now with therapeutic marijuana. Cannabis is available legally in

13 states; New Jersey is in the fi nal legislative phase for our medical marijuana bill in 2009.

There is a need for new MS therapies, and cannabis is a strong candidate, not only for symptoms but to possibly slow down the progression of MS. Other countries have already recognized cannabis as an MS therapy. There is even a prescription pharmaceutical product made from natural marijuana called Sativex that is prescribed for MS outside of the USA.

Yet the National MS Society states that it cannot, at this time, recommend that cannabis be made widely available to people with MS. The Society feels that more research needs to be performed to study the positive and negative effects as well as ingestion methods. I fi nd it diffi cult to understand many of these concerns when looking at the scientifi c evidence.

It is very likely that the N.J. bill will be passed

by the end of this year, with continued public support, and the program would go into effect within 90 days. The Coalition of Medical Marijuana of New Jersey will be following these developments on its Web site, cmmnj.org. When the law goes into effect, this site will provide links for people to fi nd out how they can become registered and how to comply with the law.

~ Peter Rosenfeld, Collingswood, N.J.

Editor’s Note: The National MS Society’s medical advisory board is led by some of the world’s leading experts in multiple sclerosis. Based on the studies to date – and the fact that long-term use of marijuana may be associated with signifi cant cognitive side effects – it is the opinion of the board that there are currently insuffi cient data to recommend marijuana as a treatment for MS symptoms. However, the Society is currently funding a study on the effectiveness of different forms of marijuana to treat spasticity in MS, and established a task force to examine the use of cannabis in MS. For more information, please visit nationalMSsociety.org and search for “marijuana.”

LETTERS

JOIN THE MOVEMENT: nationalMSsociety.org/pae16 JOIN THE MOVEMENT: nationalMSsociety.org/pae16

Bladder problems are one of the most common symptoms of MS, yet they’re not something that comes up very often in conversations with doctors.

Sometimes the symptoms progress so slowly that people forget what normal is. Other times, they simply accept that incontinence is a part of living with MS, said Kris Levine, neurology specialty programs coordinator at St. Luke’s Medical Center in Bethlehem, Pa.

“A lot of people ignore it, but bladder issues can defi nitely impact a patient’s quality of life,” she said.

She tells the story of a patient who was concerned about bladder symptoms, but didn’t want to seek treatment.

“She called me back and thanked me for being a little pushy to make her go to the urologist,” Levine said. “She

said, ‘You helped make an unbearable disease bearable.’”

Untreated bladder issues such as chronic urinary tract infections can severely affect someone’s MS symptoms, disease and ability to take their medications, she said.

“It is something people need to look at, not only as an inconvenience, but from their

general and MS health standpoint,” she said.

Incontinence comes from malfunction in the bladder, the sphincter that controls the opening from the bladder or both. This leads to the most common bladder symptoms:

> Frequency: needing to urinate more frequently

> Hesitancy: having the urge to urinate, but not being able to go

> Urgency: the sudden and immediate need to urinate.

Doctors can treat overactive bladder with medications and address diffi culty urinating by teaching people to catheterize themselves. Non-invasive biofeedback and stimulation also work well for some people, Levine said. And lifestyle changes such as avoiding caffeine can make a big difference, she said.

“There are very simple things that could defi nitely make things better,” she said.

Levine suggests several approaches for people who may be uncomfortable bringing up incontinence with their doctors.

Highlight it on the symptom review forms you fi ll out at the beginning of your appointment, or mention it to your nurse to bring up with the doctor, she said. You can even keep a diary of your symptoms and hand it over when you’re talking with your physician.

“You shouldn’t be embarrassed,” Levin said. “Physicians and nurses feel very comfortable talking about bladder issues, just as if your foot was numb.”

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It is something people need to look at, not only as an inconvenience, but from their general and MS health standpoint.

Don’t ignore incontinence symptoms

To learn more about the Society’s stance on these and other issues, visit http://main.nationalMSsociety.org/hcreform.

To learn more about the 2010 N.J. and Pa. elections, check out the interactive presentations on our advocacy Web sites: MSactivenj.org and MSactivepa.org.


TOP 8 health-care reform issues for people living with MS

As legislators hash out the details of a health-care reform bill in Congress, the National MS Society is actively

promoting a number of issues of key importance for people living with MS.

“We want to ensure that the focus is on helping people with out-of-pocket costs, eliminating discrimination based on pre-existing conditions and opening up access to the type of treatment people need, when they need it – whether that be physical therapy, biologic drugs or even mental health care,” said Shawn O’Neail, the Society’s associate vice president of federal government relations.

The Society’s health-care reform platform supports many improvements, including:

1. Repeal of 24-month waiting period for Medicare disability coverage

2. Opening a pathway to allow for review and approval of generic biologic drugs

3. Limiting out-of-pocket costs by changing tiered insurance systems that require a signifi cant out-of-pocket contribution for expensive MS drugs

4. Eliminating annual or lifetime caps on the amount that insurance will pay for an individual

5. Ensuring that people have access to long-term supports and services

6. Ensuring that people have access to physical therapy

7. Ensuring that insurance companies no longer can discriminate against people with preexisting conditions

8. Making insurance premiums, deductibles and copayments affordable

O’Neail said he felt fairly confi dent that pre-existing conditions and insurance pay-out caps would be eliminated as part of federal health-care reform, and that mechanisms would be put in place to help with out-of-pocket costs.

It’s less clear, he said, what kind of long-term supports and services may be made available or what type of pathway might be provided for approval of safe and generic biologic drugs.

Finally, it seems the repeal of the 24-month waiting period for Medicare faces an uphill battle as concerns grow about the cost of health-care reform, he said.

“Something like Medicare may be one of the casualties of shortsightedness when people complain about the costs rather than looking long term at not only people’s wellness, but the money that can be saved from managing chronic diseases proactively, rather than waiting,” O’Neail said.


When Julie D. lost her job as a bookkeeper in February, she joined millions of Americans in health-insurance limbo.

But while some unemployed people may decide to let their coverage lapse rather than paying the full cost of insuring themselves, it’s critical that those with MS maintain coverage.

The issue is this: people who have a health-insurance gap of more than 63 days become subject to pre-existing condition clauses, which could make it diffi cult for someone with multiple sclerosis to secure future coverage for costs related to the disease.

“It is imperative to maintain and avoid any gaps in health insurance,” said Christina Forster, MA, CRC, manager of the Greater Delaware Valley Chapter’s MSWorks employment service. “MS is an expensive

disease and you do not want to end up with a pile of uncovered medical bills.”

People who lose their jobs should immediately investigate the state and federal protections available to help them avoid insurance gaps, she said.

> COBRA laws require employers to cover former workers for a certain number of months, as long as they pay the full price of the insurance. (See box on right and page 20 to learn more about recent developments that expand COBRA coverage.)

> The Health Insurance Portability & Accountability Act, HIPAA, guarantees people the right to buy an individual health insurance policy and exempts them from pre-existing condition exclusion periods, as long as they meet certain criteria.

> State Medicaid programs such as Adult Basics in Pennsylvania and the New Jersey Family Care Plan are required to offer insurance plans to individuals, although they may not be affordable. The same goes for Independence Blue Cross.

Julie D., who asked that her last name not be used, worked for a company too small to be subject to COBRA laws. Her employer allowed her to stay on the plan anyway – until May, when her former boss called to say she’d need to fi nd a new plan, as of June 1.

Julie already had made repeated calls to

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Independence Blue Cross and other local insurance companies, but had been unable to secure a policy that matched the features she was quoted on the phone.

So she turned to the Society. Kim Calder, the national director of insurance initiatives, suggested she fi le a complaint with the Pennsylvania Attorney General’s offi ce about the length of time she had effectively been denied coverage.

Meanwhile, Forster sent Julie information about health insurance and fi nding a job and maintains contact to assist with her search.

After fi ling the complaint with the Attorney General’s offi ce, Julie was able to secure a policy through Independence Blue Cross that started just as her old insurance ran out.

And while the new policy doesn’t cover prescription drugs up front, Calder also helped her secure 100% coverage through the National Organization for Rare Disorders.

“I was freaking out. In order to not relapse from the stress, I needed help taking care of this,” Julie said. “The Society has been fantastic.”

HEALTH INSURANCE RESOURCESThe Greater Delaware Valley Chapter’s Health Insurance Initiative Project, available online at http://main.nationalMSsociety.org/HIIP, provides information on how to stay covered by insurance, buy an individual plan and fi nd assistance paying for prescription drugs. The site also offers a wealth of information on state Medicaid plans and explanations of laws such as COBRA and HIPAA.

STIMULUS FUNDS HELP LAID-OFF EMPLOYEES PAY FOR COBRAAnyone who loses group health insurance in a layoff can elect to extend their coverage for up to 18 months and sometimes longer through COBRA (the Consolidated Omnibus Budget Reconciliation Act).

The problem is that COBRA participants typically pay 102% of the premium, making it hard to afford on unemployment insurance. The American Recovery and Reinvestment Act – better known as the “stimulus package”– offers some relief.

Eligible workers laid off between September 1, 2008 and December 31, 2009 may continue their coverage and pay only 35% of the premium for up to nine months.

“Contact your former employer right away to determine whether you can opt in,” said Kim Calder, director of insurance initiatives for the Society. “COBRA not only provides the same coverage you had while you were working, it can help you get new insurance later on. This can be critical if you have a pre-existing condition like MS.”

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MOVING MS CENTERS TO COMPREHENSIVE CARE

The National MS Society has redesigned its affi liation process to encourage the MS centers it partners with to develop a comprehensive approach to quality care.

The comprehensive care model includes the full range and scope of services a person living with MS might need, from social work to resource coordination, counseling and emergency care.

The Society will work with current MS centers and new collaborations to defi ne and move toward the high-quality care that people with MS should expect to receive.

ANNUAL REPORTS NOW AVAILABLE

The National MS Society’s and the Greater Delaware Valley Chapter’s annual reports are now available online. To access the chapter’s annual report, go to nationalMSsociety.org/pae. Click on “About this Chapter” on the left, then “Annual Reports.” To access the national annual report, click on “About the Society” at the top of the page, then “Annual Reports” on the left.

CHAPTERS DRIVE ADVOCACY SUCCESSESIN PENNSYLVANIA, Gov. Ed Rendell signed into law a new mini-COBRA law that the chapter and a broad-based coalition of disability groups had been advocating.

Thanks to the new legislation, employees laid off by small employers are now eligible for state mini-COBRA benefi ts, which extend health coverage under the employer’s insurance plan and will allow people with MS and other chronic conditions to remain insured.

The legislation also means that the 65% reduction in COBRA premiums authorized

under the new federal stimulus law (see page 19) will apply to mini-COBRA benefi ts for workers laid off from small businesses for up to nine months.

IN NEW JERSEY, the chapter and its allies successfully pushed for a restructuring of the personal assistance services program, which provides personal care assistants to people working or volunteering with disabilities, including MS.

The new structure puts clients in control of the way they spend the money allotted to their personal care. In addition, they can spend any money left over at the end of the month on durable medical equipment.

People living with MS represent the majority of people receiving the PASP benefi ts.

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What are your legislative interests?

One of the things I’m very proud of, that I’ve been one of the champions of, is the Cancer Institute of New Jersey. It’s a leading cancer institute in the country. It’s driving our economy and providing quality health care for our residents close to home.

There’s a similar situation with MS. There aren’t any MS centers in South Jersey, so people end up coming into Philadelphia for MS care, as well.

Lack of access in South Jersey and the need for patients to come over into Philadelphia is the type of thing I’m anxious to work with the community on, to solve those problems.

Have you been involved in MS-related issues beyond the advocacy day and your appearance at our Walk MS site?

It started with the day we honored the National MS Society in Trenton and having your organization reach out to us. I don’t believe in knee-jerk public policy. We would rather have a fi rm understanding of what the needs are so it’s not window dressing to address the critical needs. That’s what we’re in the process of trying to do with MS.

I am fortunate. I have not been struck with MS; my family has not been. But I have grown to have such respect for these people we met that day, their struggles and some of their

stories. I’m trying to get my arms around what is their real need and how we can best help them.

What’s the best way for constituents to reach out to you?

I love it when people come in and meet with us. When you have that face-to-face dialogue … you truly get a better perspective on the challenges people are facing. I think when you’re working together in that way, you can solve problems in really a more holistic way. That’s what I would encourage people to do. They can contact me in any way they’re comfortable, but my preference is face-to-face conversation.

What don’t people know about you?

I got involved in government because my mom, Maria Barnaby Greenwald, was a legend in South Jersey politics who served 20 years in public service. In 1995 she passed away tragically in a car accident and from that tragedy, I was asked to run for offi ce. I did and I’ve been very blessed, very lucky. It has allowed me to keep her memory alive. What I’ve learned, literally at her knee, is how I try to do this job.

MEET YOUR LEGISLATORAssemblyman Lou GreenwaldDistrict 6, New Jersey

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The Greater Delaware Valley Chapter has awarded scholarships to eight 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.

Many of the scholars from the Greater Delaware Valley have served as caregivers for their parents after school, on weekends and during the summer. Despite these responsibilities, they have earned good grades, participated in extracurricular activities, held jobs and fundraised for others with MS. One recipient is living with MS.

Information about scholarships for 2010-11 will be available on the National MS Society Web site beginning on Oct. 1, 2009, and applications will be due by mid-January 2010. For more information, call 1-800-344-4867 or visit nationalMSsociety.org.

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James A. ChurgaiPhoenixville, Pa.Phoenixville Area High School

Thomas J. Dolan, Jr.Westampton, N.J.Bishop Eustace Prep School

Yaritza Y. GonzalezPhiladelphia, Pa.Community Academy of Philadelphia

John M. HoltjeEast Greenville, Pa.Upper Perkiomen High School

Dominique G. MountainBrowns Mills, N.J.Pemberton Township High School

Jaileen RodriguezPhiladelphia, Pa.Community Academy of Philadelphia

Therese A. UrbonasBrigantine, N.J.Holy Spirit High School

Krista M. ZerkowPhiladelphia, Pa.Abraham Lincoln High School

Eight students in region receive scholarships to support educational goals

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[email protected]

www.cpvalleyforge.com

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When I was diagnosed with multiple sclerosis, I was working as an addictions counselor for an area drug and alcohol rehabilitation program. I’m not talking about a facility like the Betty Ford Clinic. Most of my patients were court stipulated to be there and were admitted directly from county prison. This was a tough bunch.

On the day I was diagnosed, my doctor suggested I fi nd a different line of work because the stress was not good for me. Whether you have MS or not, you have probably heard at some time that stress isn’t good for your health. But it seems unavoidable.

So if it can’t be avoided, that means fi nding ways to channel it. There is no single way to deal with stress that works for everyone. The key is to try different techniques until you fi nd what works for you. It is likely that you will need to fi nd a combination of methods. There is no one-size-fi ts-all strategy for stress reduction.

> Writing: You may say, “I’m not a writer.” You don’t have to be. You can journal. This kind of writing is for the writer alone. It is a way to get the things that consume your thoughts out of your head and into a place where you can begin to make sense of them. I have a friend who tells me she journals about what

troubles her and when she is ready to let it go, she burns the journal or the pages as a way of symbolically freeing herself of the problem.

> Deep breathing: When I am stressed, I often fi nd myself lying in bed at night wrestling with my thoughts. I call this “busy-head.” I’m sure we have all been there. I use a technique taken from yoga to help clear my head: deep belly breathing.

This is done by taking deep breaths, breathing the air into the abdomen and slowly releasing the air. To be sure you are doing it correctly, rest your hands on your belly with your fi ngertips touching. As you breathe in, your belly should expand and your fi ngers on each hand will spread apart.

Even if you don’t execute it perfectly, you will fi nd that by focusing on your breathing, you become distracted from the issues keeping you awake at night. And those of us who have MS know the value of getting our rest.

This technique can be used anytime. It is not just for restless nights. It can help calm and help redirect focus.

> Exercise: Exercise also is a fantastic form of release. I fi nd that aerobic exercise works best for me, but I realize that not everyone with MS is up for a spin class or step class. Swimming can be a great aerobic workout and is suited to most individuals. Swimming releases endorphins like other aerobic exercise, thus reducing stress.

Many options are available for channeling, releasing stress

Susan Ferrier

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Additionally, I fi nd swimming to be an effective distraction. When swimming, I am focused on breathing (don’t want to drown) and my stroke. Other aquatic options include water aerobics and aqua jogging. All provide relaxation but have the added benefi t of helping you become a stronger, healthier person.

> Counseling: If you are going through a particularly stressful period in your life, you may need to talk to a counselor. Much like journaling, talk therapy helps get all those thoughts swirling around in your head out so that you can look at the issue more objectively. Not to mention you have someone to help guide you in the right direction.

I have twice found in the years since my diagnosis that therapy was appropriate; fi rst when learning of my diagnosis and again

years later when I became disabled and could no longer work a full-time job. Either of these situations can bring about a wave of emotions and stress. There are therapists who specialize in chronic illness. And there is no shame in talking to one of them.

All the techniques mentioned are as good for caregivers of people with the disease as they are for those with MS. Caregivers often forget to take care of themselves. This can only lead to frustration and stress. A caregiver who never takes time out for themselves ultimately becomes ineffective. Even 5-minute timeouts can make a difference. (See pages 8-9 for a new concept in caregiver wellness.)

These are just a few approaches to stress management. There are many more. Experiment and fi nd what works for you. We may never be completely free of stress, but it is an ideal worth striving toward.

Strength comes from within Consider participating in a clinical research study of an investigational medication for Relapsing Multiple Sclerosis. All investigational medication and procedures required for participation will be provided at no cost.

To be eligible, you must: • Be 18 to 60 years old • Have Relapsing MS • Have not received immunosuppressive

medications

Other eligibility criteria will apply.

For more information, call The Hospital of the University of Pennsylvania Department of Neurology- MS Research Team Kimberly M. Carn-Louis Email: [email protected]: (215) 662-4321or visit www.ataMS-study.com


When Bob Levin experienced a bizarre symptom that even his doctors couldn’t explain, he turned to his

self-help group.

“They said, ‘Bad taste in our mouths? We’ve had that problem,’” Levin said.

While everyone’s symptoms are unique, the members of the Main Line self-help group understand each other and the experiences they share, he said.

“We all need the support of our loved ones, but we also get support from each other,” said Levin, who says the monthly meetings are one of his few outings. “It’s an opportunity to socialize with other people who have a similar problem.”

The Greater Delaware Valley Chapter sponsors 30 self-help groups throughout the 18 counties it serves.

The groups and their leaders extend the Society’s reach into communities that may not regularly have access to larger educational programs and help keep the staff abreast of issues that are important to the people they serve, said Lara Estomin, a programs manager for the chapter.

Self-help groups also allow the Society to support people living with MS in a more personal, emotional way than it can provide in educational workshops, she said.

“It gives people the opportunity to share experiences, bring up research and really touch down heart-to-heart, which I think is so important,” said Janice Park, the founder and leader of the “Let’s Talk MS” self-help group in Malvern, Pa. “It gives them the opportunity to feel normal again.”

Park’s group believes in laughing – a lot.

“We look at MS as an adventure, rather than a terrible dooming cloud that has come over us,” she said. “In our group, we try to keep that positive outlook.”

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We look at MS as an adventure, rather than a terrible dooming cloud that has come over us. In our group, we try to keep that positive outlook.

Learning and laughing: Self-help groups provide support and social opportunities


The two constants at her monthly gatherings are food and conversation. Park sometimes presents recent research fi ndings or an advocacy issue to get the discussion started. Other times, a member will ask a question or the group will get to know a visitor.

It’s an approach that’s attracting followers. Since 2004, her group has grown to 60 people, with about 15 to 20 at each meeting. Some travel 30 to 45 minutes to “Let’s Talk MS.”

The chapter is hoping to spread the benefi ts of self-help groups even more widely by starting new groups in Philadelphia and South Jersey. But groups can’t start without leaders (see sidebar for details).

Leading a self-help group is a big responsibility, but it also can help people come to terms with

their own MS and make a major difference in the lives of others, Park said.

“I’ve seen that I am so much stronger than I ever thought I was before,” she said. “I think it all started by saying ‘yes, I’m willing to lead this self-help group.’ It really can be the most fun, rewarding job you can ever do.”

Self-Help Group Leaders NeededWe’re forming new self-help groups for people living with MS in Bordentown, Vineland, Atlantic City and Salem, N.J., as well as Center City Philadelphia and Stroudsburg, Pa. The Bordentown group will have a concurrent caregiver group, too. We’re also interested in starting additional new groups in South Jersey and Philadelphia.

We need your help as a self-help leader or group member. We rely heavily on our leaders, as they play an integral role in bringing people together who share a common life experience, living with MS.

We also are eager to fi nd a new co-leader for the Montgomery County Hope Club that meets at Mercy Suburban Hospital in East Norriton, Pa. If you have a connection to MS and a desire to get more involved in your community, please contact us about this important position.

Interested? Have Questions? Want to suggest another location? Call Jennifer Kelley at 215-271-1500, ext. 162.

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Congratulations on being named Personal Chef of the Year. What was your reaction?

I was very excited. It was something very special. I worked very hard for it, not only professionally but personally, also. It was a big surprise.

What are the highlights of being a personal chef?

The hours are great. I have a lot of fl exibility with my schedule. I’ve met great people along the way – a lot of movers and shakers. There is instant gratifi cation with food. I am grateful for the accolades but more so for the personal fulfi llment of bringing joy to others through the meals I cook. There’s also the sense of accomplishment; I’m very proud of owning my own business for nearly eight years.

What are the negatives?

Health insurance is huge. I pay a lot of money, as a lot of people do, and especially having MS, it’s really diffi cult. That’s always weighing

on my mind: how can I continue to pay these rates? I can only hope and pray something happens with health care for everybody. Affordable health care should be available for every American.

How did you become a personal chef?

After 9/11, I was working in the city for the second largest corporate travel agency in the world. I was released from employment a week later and then my career, actually my whole life, did a complete reversal. Cooking was always a passion, growing up in an Italian kitchen. I always knew that I could cook and my friends liked my food. Looking for a job was very daunting at that time. I was fooling around on the computer and “personal chef” popped up. I said, “I can do that.”

Did having MS complicate things?

I was diagnosed with MS that following March. When I started working, the function of my hand was at 50%. Since it was my left

Face of MS: Allison Coia

Allison Coia considers herself “one of the lucky faces with MS.” Since her diagnosis with MS seven years ago, she has built a successful business and a nationwide reputation cooking for people in their homes as a personal chef. Coia recently was named Personal Chef of the Year in a vote by her peers in the Personal Chefs Network. Learn more about her business, Cook-A-Doodle-Doo, on her Web site, cookadoodledoo.com

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The National MS Society honored 14 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.

Three students who each raised $1,000 or more also had the opportunity to meet Philadelphia Phillies player Scott Eyre.

The MS READaTHON encourages children to read as many books as they can during a four-week period to raise funds for the National MS Society. This year, 60 area schools participated in the MS READaTHON, raising $124,000. These funds are used to provide programs, services and research for 11,000 area families living with MS.

Cynthia Horan, the top MS READaTHON fundraiser, raised $1,766 for people living with MS. She’s pictured here with Andrew L. Fernandes III and Cole Caruso, who also raised more than $1,000 each.

hand, I was able to maneuver with limited ability. I went through physical therapy and everything came back. Knock on wood, I haven’t had a problem with it since.

Your sister has MS too. How is she doing?

We’re polar opposites. She has the motorized scooter, the instability when she stands, very limited use of her hands. She had to go on disability when she was 52 or 53. It’s amazing – we’re related, so you’d think we’d have more similar symptoms, but we’ve been on separate paths since the beginning. It’s very frustrating for me to see it happening. My sister is an inspiration to me and I dedicate each Challenge Walk and fundraiser primarily to her.

What has your involvement been in Challenge Walk?

I was in the exploratory committee back in 2002 and did the fi rst walk in 2003. After the fi rst 50-mile walk, I signed up to be crew. Challenge Walk is challenging. Then more recently, I walked again. I’ve met some inspirational people along the way who continue to motivate and drive my passion to fi nd a cure for MS.

Allison Coia, far right, at Challenge Walk MS

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READaTHON is a hit for 14 MVP kidsClockwise from left: Andrew L. Fernandes III, Scott Eyre (Phillies), Cynthia Horan and Cole Caruso


South Jersey lifeguards raised more than $3,700 in July to benefi t the Society through the 16th Annual Upper

Township Beach Patrol MS Six-Mile Bay Row.

More than 50 crews of lifeguards rowed Van Duyne surfboats six miles in the back bays around Strathmere, N.J., with victory going to Avalon lifeguards Craig Whitehead and Shane McGrath. The hosting Deauville Inn was

packed with hundreds of fans and supporters of their favorite crews.

The organizers were looking for a unique race that could utilize the athletic skills of lifeguards and provide the South Jersey Chiefs Association with a venue for giving back to the communities it works in, said founder Bill Handley. 16 years later, the event remains a summer fi xture down the shore.

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The University of Pennsylvania is looking for women with relapsing-remitting MS for a 24-month study to see if there are less relapses with the treatment of Copaxone injections plus oral estriol as compared to the treatment of Copaxone injections plus oral placebo. We are looking for:

• Women 18-50 years old

• Diagnosed with defi nite RRMS

• Able to walk without any aids such as cane or walker

• Had at least one relapse within the last 2 years

You are not eligible for the study if you are pregnant, breast-feeding, smoke, or have

other serious medical conditions. Those treated in the past with Copaxone, Avonex, Rebif or Betaseron will NOT BE EXCLUDED.

This study is being conducted by Dina Jacobs, MD, Professor, Department of Neurology, University of Pennsylvania. If you are interested, contact Vanessa Zimmerman, the study coordinator, at 215-349-5162 or [email protected] for further information.

This trial is funded by the National Multiple Sclerosis Society and the National Institutes of Health.

Website: http://tinyurl.com/estrioltrial

FEMALE MS VOLUNTEERS NEEDED FOR RESEARCH STUDY


VIPER BLUE PRIDE CELEBRITY X SCOOTER: Brand new, owned just a few weeks. Four-wheel model, Pride 3-year limited warranty. Not yet registered, ready to roll. For specs, go to www.pridemobility.com/scooters/celebrityx.asp. Asking $1,950. Call Heather at 215-886-4715.

STANNAH STAIRLIFT: Accommodates 14 steps and a corner. Owned 14 years, hasn’t been used in years. Recipient would need to remove from home in Newtown Square, Pa. Will accept best offer, with all proceeds going to the National MS Society and people living with MS. Call Bob at 610-613-9009.

2000 TOYOTA CAMRY: 4-door XLE sedan with silver gray exterior and interior. Car customized with hand controls, wheelchair holder in trunk, 4-way panoramic side view mirrors and steering wheel knob. Approximate mileage: 45,000. CD player with premium sound, moon roof. Excellent interior/ good exterior condition. Asking $7,800. Contact Teresa at [email protected].

PRIDE 3-WHEEL GO-GO ULTRA X TRAVEL SCOOTER: Never used (tags still on), blue. Innovative design features include one-hand locking mechanism and drop-in battery pack. Easily dissembles into fi ve pieces for convenient transport and storage. Paid $734, asking $675. Call Linda at 609-927-7997.

PRIDE JAZZY SELECT POWERED ELECTRIC WHEELCHAIR: Like-new condition, only used indoors for 3 months. Dark red body, gray leather seats. Dual in-line motors, right-handed joystick control, angled leg supports. Asking $1,800. Call Jack at 215-256-4176.

ONE-STORY HOME: Single rancher in Academy Gardens, NE Philadelphia, 19114. 3 bedrooms, 1 bath, living room, dining room, kitchen. Central A/C, new heat, fairly new roof. Front yard and large fenced backyard. In settled, quiet neighborhood close to shopping, with access to I-95. Call 215-464-3611 after 4 p.m., M-F, or e-mail [email protected].

WHEELCHAIR-ACCESSIBLE HOME: 4 bedroom, 2 bath accessible Cape Cod house in the Roxborough section of Phila. First level includes widened doorways, spacious living room, formal dining room, eat-in kitchen, laundry, rear family room and large master suite with wheelchair-accessible bath. Upstairs are 3 bedrooms and 1 full bath. Spacious, fully fenced yard includes large deck off kitchen. Wheelchair ramp provides access to front porch entry. Asking $344,900. Contact Thomas Hodge, Century 21 Alliance, Lafayette Hill, Pa. at 610 908-9963. www.thomashodge.com.

ACCESSIBLE CONDO: Brand-new, never occupied condo in Creekside Village, Upper Chichester Township, Pa.; one fl oor, sensible upgrades, street level. Close to parking lot and curb cut. 2 bedrooms, 2 baths, private balcony. In 55+ community, but under 55 years old is OK. Call Stanley at 610-543-1973.

ACCESSIBLE HOME: Custom-built home in SW Poconos is completely wheelchair accessible, inside and out. 2,000 sq. ft. with 3 bedrooms, 2.5 baths, offi ce, laundry room, plus a full 2,000 sq. ft. walk-out basement and deck on beautiful 1-acre landscaped property in a great neighborhood. Call Chris at 570-629-7297.

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Include your full name and address with

“e-mail only” in the subject line.

PROGRAMS TOBUILD YOURThe Greater Delaware Valley Chapter will offer a full slate of innovative programs throughout the region over the next year, including:

Taking a holistic approach to your health

Managing stress with MS

Building a comprehensive care team

Parenting and relationships

Self-advocacy

Family program favorites

Watch your mailbox for more details, or sign up for the chapter’s e-news on our Web site at nationalMSsociety.org/pae.

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Documents

MSConnection 2009 Issue 3