2011 Issue 1
Greater Delaware Valley Chapter
What does MS mean to you? . That’s the question our chapter is posing Share your answer at to the region this month as we launch MSmeans.org a special MS awareness campaign to coincide with MS Awareness Week, March 14-20.
INSIDE THIS ISSUE:
Continued on PAGE 16
Rally for Walk MS Pages 5-9
David Osmond at WAMS Luncheon Page 14
MS Awareness Week: March 14-20, 2011 Pages 16-17
Advocacy Outlook Pages 18-21
Upcoming events National Multiple Sclerosis Society Greater Delaware Valley Chapter 1-800-548-4611 1 Reed Street, #200 Philadelphia, PA 19147 Chair Brian DiDonato Vice Chairs Larry Kane Marianne Jackson
Vice President, Communications Kevin Moffitt MSConnection Editor Anne Krishnan
President Tami Caesar 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. Š2011 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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JOIN THE MOVEMENT: nationalMSsociety.org/pae
To register for these or other events, visit calendarMS.org. Saturday, March 12
MS Employment Conference
March 14-20
MS Awareness Week
Wednesday, March 16
Employment Teleconference Series: Practical Tips for Managing Challenging MS Symptoms on the Job
Wednesday, March 30
Employment Teleconference Series: MS, Wellness and Work
Sunday, April 17 and Sunday, May 1 Walk MS 2011
Tuesday, May 3
Women Against MS (WAMS) Luncheon
Community Outreach Days Space is limited! Register by calling Karen Sheppard at 215-271-1500.
March 15, April 19 & May 17
Good Shepherd Rehabilitation Network Edwards Center 850 S. 5th Street Allentown, Pa.
March 17
University of Medicine and Dentistry of New Jersey 42 E. Laurel Road UDP Building 3500 Voorhees, N.J.
April 21
Voorhees Self Help Group Marlton Rehab 92 Brick Road Marlton, N.J.
May 16
Sewell Self Help Group St. Charles Borromeo Religious Education Center 176 Stagecoach Road Sicklerville, N.J.
IN BRIEF
Researchers Report MSRelated Gene in More Women than Men
Reporting on a study tracing MS in 1,055 families, investigators suggest that a gene long known to have association to MS susceptibility (HLA-DRB1*15) may be more likely to be found in women with the disease than men, and that women with this gene variation may be more likely to transmit it to other women in their families than to men. If confirmed by other investigators, the findings might help explain why women are more likely than men to develop MS, and reinforce the idea that factors other than genes, such as the environment, influence whether a person develops MS.
FDA nixes new drug formula The FDA has declined to approve a new low-volume formulation for the multiple sclerosis drug Copaxone (glatiramer acetate) that reduces injection-site pain and swelling, according to its manufacturer.
Teva Pharmaceuticals said the agency considered the data on the low-volume formulation’s efficacy to be inadequate.
Guidelines recommend plasma exchange for severe MS relapses
Racial, ethnic differences in MS identified
Updated guidelines from the American Academy of Neurology recommend plasma exchange (plasmapheresis) for the treatment of acute, sudden severe MS relapses that don’t respond to steroids.
Researchers at Mississippi State University found that Caucasians were generally older than Latinos or African-Americans at first experience of MS symptoms/ diagnosis. Latinos were more likely to report normal mobility and bladder/bowel function than were Caucasians, and AfricanAmericans and Latinos were more likely to report at least mild depression than were Caucasians. Latinos were less likely than Caucasians or African-Americans to receive mental health care or rehabilitation, and AfricanAmericans were less likely to be treated by a neurologist/MS specialist or to receive care at an MS clinic.
Trial recruiting in Philly & Allentown Investigators nationwide are recruiting 1,800 people with relapsing-remitting MS between the ages of 18 and 60 for a study to evaluate the benefits of remaining on Copaxone or Rebif or switching to Tysabri. This study is for people who experience “breakthrough” disease activity and is funded by Biogen Idec in partnership with Elan Pharmaceuticals, Inc.
Plasma exchange involves replacing the plasma (the liquid part of a person’s blood) with plasma from a donor. The process removes factors in the blood’s plasma thought to play a role in MS. Plasmapheresis has not been shown to be helpful for chronic secondary progressive MS.
Treatment may become available in the form of a patch A small study in people with relapsing-remitting MS showed that applying a skin patch containing components of myelin succeeded in suppressing immune activity. Further studies will be needed to determine whether this approach is safe and effective for treating MS.
TOLL FREE NUMBER 1 800 548 4611
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President’s message
Speak up about what MS means to you MS. Those two letters mean something unique to each and every person touched by the Tami Caesar, disease. And the President more people you know living with multiple sclerosis, the more your personal definition changes. Growing up with the unpredictability of MS in my family, I thought I had a thorough understanding of the potential impact of the disease. Then I joined the National MS Society and have since had extraordinary people share their deeply personal stories with me. A few of the many people who stand out include: a young woman who discovers that she can’t walk the night before her wedding; a husband who works two jobs so he can pay his wife’s medical bills; a college football star on scholarship who can’t catch the ball anymore; a six year old girl who struggles to help her mother take a bath; and families in crisis that were made stronger by an MS diagnosis. These individuals have broadened my awareness of MS in their own way. Each personal experience is a reminder of what MS really means and why we need to do everything we can to end MS forever.
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Achieving that lofty goal depends on awareness. That’s why we are investing in the MS Means campaign in the Lehigh Valley in March and plan to do the same in the Philadelphia area later in the year. We are making this a priority because the general public just doesn’t understand how unpredictable and difficult life can be for those diagnosed and their loved ones. As individuals, we tend to get involved in causes we understand. Most people know why we need to fight racism, pollution or fatal diseases. Unfortunately, many of those around us simply don’t understand what MS is or what it does to those affected. We need to change that – if not for you, then for the thousands of other local people living with MS. Everyone living with MS deserves the opportunity to tell their story. Moreover, everyone living with MS needs to know they are not alone and there is a community ready and willing to support them. By telling us your story, that community will get even stronger. By speaking up, more people will understand why they need to do something about MS right now. Tell us what MS means to you at MSmeans.org. Warmest Regards,
JOIN THE MOVEMENT: nationalMSsociety.org/pae
Walk MS
Rally around Walk MS in 2011 Event supports research, services and a brighter future 2011
Each spring since 1995, Regina Johnson has saved the first weekend in May for Walk MS. Johnson, the captain of Gina’s Gems at the Philadelphia Art Museum site, protects the weekend against all other commitments including, one year, putting off a family vacation. “I have MS and I feel I have a responsibility to get involved because I’m trying to be there for people who are worse off than me,” she said. “MS is no picnic for me, but God has given me the strength to be able to do more than some people can. I’m walking for a cure.” Johnson and others in the community of people affected by MS will rally around Walk MS this spring at 18 sites around the region.
And it has never been more important that you join them. It’s up to you to say that this event, this cause, this vision of a world free of MS is important to you – and that you’re committed to being there.
Walkers at Walk MS: Medford Lakes 2010
Continued on PAGE 6
TOLL FREE NUMBER 1 800 548 4611
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Walk MS
“The Society currently has a research funding shortfall of $4 million.” Continued From PAGE 5
Walk MS is at a critical juncture in its history. Over the past four years, revenue generated by our local Walk MS events has declined by 30 percent, sliding from $2.85 million in 2007 to $1.98 million in 2010. Over the same period, demand for our services has soared. While we have dipped into our reserves to meet the increased and changing needs of local people living with MS, we can’t continue to operate in the red over the long term.
Your participation matters The gaps left by Walk MS funding shortages strike at the very dignity of the people we serve. Many with MS already must scout for restrooms as soon as they enter a public place. What if they couldn’t afford the incontinence supplies that give them the protection they need to stay independent and active? Many of our clients can’t, and they turn to us for help. But due to rising demand and constrained financial resources, we have had to restructure 6
JOIN THE MOVEMENT: nationalMSsociety.org/pae
the program and trim its benefits in recent years to continue to serve as many people as possible. What’s more, MS research has never been more promising. Scientists are undertaking more exciting and important research projects than ever before, projects that promise to unlock the secrets of MS and make a brighter future possible for people living with the disease. In 2011 alone, scientists have reported on an MS-related gene that seems to occur more often in women, issued new guidelines for plasma exchange therapy as an MS treatment and analyzed the role of histamine in controlling MS. Yet, due to fundraising declines in Walk MS and other events nationwide, the National MS Society is no longer able to fund all of the projects it deems worthy. In fact, the Society currently has a research funding shortfall of more than $4 million. What’s more, despite the importance of training the next generation of MS specialists, the Society has not been able to fund two of the 12 clinical fellows it has approved. Walk MS is a critical awareness-building campaign in our community, helping educate thousands of people each spring about multiple sclerosis and the people living with it.
Walk MS
As participation declines, so does our opportunity to spread knowledge, awareness and understanding of MS among your neighbors, coworkers and friends. Sheryl Casey has made it her mission to raise awareness in her Washington Township community through Walk MS. Each year, she captains our chapter’s largest Walk MS team, Casey and the Sunshine Clan, recruiting more than 500 children and adults to be a part of the celebration at Washington Lake Park. She finds strength and inspiration from the many generous, kind and supportive people who surround her each year, giving of themselves and making their contribution to change the future for people living with MS. “All of the wonderful walkers of our ‘clan’ keep me motivated to work as a faithful activist and a passionate ambassador in the MS mission,” Casey said. “I ask everyone to rise to the challenge and be active!”
Casey and the Sunshine Clan at Walk MS: Washington Lake Park 2010 But you don’t have to replicate her amazing feat to show your commitment to Walk MS. Just find a location near you and write the date on your calendar in pen. We urge you, your friends and family members to join Johnson, Casey and thousands of other committed participants at Walk MS in your community this year. With 18 wheelchair-accessible, family-friendly sites throughout our region, there’s sure to be a location near you where you can walk, roll or volunteer to show your commitment to a world free of MS.
We’ll see you there! Register for Walk MS at walk4MS.org or by calling 1-800-883-WALK. If you need help starting a Walk MS team, call our friendly staff for assistance at 1-800-883-WALK. TOLL FREE NUMBER 1 800 548 4611
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Walk MS
Meet our MS ambassadors Sheryl Casey and Regina Johnson are among 17 walkers representing their local Walk MS sites as ambassadors in 2011. Elaine Balinski
Christine Esposito
Wade Brody
Meruka Hazari
Sheryl Casey
Joseph Holmes
Wendy Caulfield
Regina Johnson
Wendizzles Ocean City Boardwalk Ocean City, N.J.
Gina’s Gems Philadelphia Museum of Art Philadelphia, Pa.
Mary Ellen Crowley
Fred Kauffman
Survivor MS Valley Forge Area Valley Forge, Pa.
Radnor Corporate Center Radnor, Pa.
Diane DiFulvio
Rick Lombardo
Elaine’s Walkers Lenape Park Sellersville, Pa.
Team Brody Parvin State Park Vineland, N.J.
Casey and the Sunshine Clan Washington Lake Park Washington Twp., N.J.
Pepper Stepper Ridley Creek State Park Media, Pa. 8
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Christine’s Cruisers Pocono Raceway Long Pond, Pa.
Miracle walkerS Moorestown High School Moorestown, N.J.
Team Holmes Coca-Cola Park (Home of the IronPigs) Allentown, Pa.
In Walking Distance Medford Lakes Medford Lakes, N.J.
Helen McDonnell
Honey’s Bunch East Goshen Township Park West Chester, Pa.
Greg and Lynae Menet
Miles for Myelin Gring’s Mill Recreation Area Reading, Pa.
New in 2011 New sites: MAIN LINE: Our newest Walk MS site starts at the Radnor Corporate Center and continues through Radnor’s Memorial Park, Archbishop Carroll High School and around Radnor Elementary School. You’ll enjoy beautiful scenery throughout the 3-mile walk and an exciting finish line celebration. POCONOS: The NASCAR pavilion at the Pocono Raceway will serve as home base for activities before and after the walk, which will follow a three-
mile paved track along the infield of the raceway. When the walk concludes, participants will be treated to a party featuring great music and food. As an added treat, walkers can take in a Corvette racing event that will run simultaneously with the walk.
Spread the Word: You can order posters and rack cards to help advertise Walk MS in your community. Contact us at 1-800-883-WALK to place your order or go to walk4MS.org, click on “Walk MS” and then click
Lisa’s Miracle Makers North Penn High School Lansdale, Pa.
Walk MS
Lisa Murray
Terri Rennard
Team Aon Tyler State Park Newtown, Pa.
Amanda Zikas
Amanda Zikas – Moms with MS Elmwood Park Zoo Norristown, Pa. the “Request Materials” button on the left.
Zumbathon®: Zumbathon® participants will take over the steps of the Philadelphia Art Museum to kick off our Walk MS fundraiser, then energize the city at a twohour fitness-party. To dance, Zumbathon® participants must raise at least $125. Call or e-mail Kimberly Stoeckley to start your own team at 1-800-548-4611 or kimberly.stoeckley@pae. nmss.org.
TOLL FREE NUMBER 1 800 548 4611
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services
Find services at Walk MS 2011
• Moorestown, Moorestown High School, April 17
The Greater Delaware Valley Chapter’s services and programs span a wide range of offerings, from self2011 help groups to physical therapy. You can find out more about both at Walk MS this year.
• Lehigh Valley, Coca-Cola Park, May 1
n At all sites, look for members of your local self-help at the “MS Experience.” Stop and chat with someone who understands where you’ve been and where you’re going, and you might just make a lifelong friend. n Physical therapists will be providing free gait and balance assessments for people living with MS from 8:30-10 a.m. and 11-1 p.m. at: • Main Line, Radnor Corporate Center, April 17
A charitable gift annuity It’s the perfect gift: a lifetime of payments and a lasting legacy benefiting people with MS. A charitable gift annuity is a simple contract between you and the Society that can benefit you or a designated loved one, and the movement toward a world free of MS. In exchange for your irrevocable gift of cash, appreciated securities or qualified real estate, the Society agrees to pay you, or the beneficiary you choose, a fixed yearly amount at favorable rates for the rest of your life or that of your chosen beneficiary. You choose when the payments start: now or at a later date, such as during retirement years. Benefits to you n Provides a legacy of discovery and care
10 JOIN THE MOVEMENT: nationalMSsociety.org/pae
• Philadelphia, Philadelphia Art Museum, May 1 • Voorhees, Eastern High School, May 1 Chapter representatives also will be available to answer questions about our physical therapy services. Space is limited!* Register now by contacting Karen Sheppard at karen.sheppard@pae.nmss.org or 1-800-548-4611 by Friday, April 15. *Please note, individuals do not have to register for Walk MS to sign up for a gait and balance assessment.
n Provides a lifetime of consistent payments to you, your spouse, parent, caregiver, child or other loved one n Eligibility for an immediate charitable income tax deduction n Option to select an advantageous start date for the fixed lifetime payments n Membership in the Lawry Circle, a group of generous donors making legacy gifts Benefits to people living with MS and the National Multiple Sclerosis Society n The Society receives the remaining balance of your gift annuity to support MS research and programs and services critical to addressing the needs of those affected by MS. To receive personalized details on how a charitable gift annuity with the Society can work for you, contact us at 1-800-548-4611 or e-mail pae@nmss.org.
When you’re dealing with fatigue or mobility issues, the weekly trip to the grocery store can be daunting. The Internet now makes it possible to order groceries online. Some stores deliver or ship them to you, while others offer curbside pickup. Most sites will save a master grocery list for easy reorders in the future. Be aware: while the convenience can be a lifesaver, online shopping may cost more in terms of delivery or pickup fees or higher prices online.
apply, but you can save money by using the “Subscribe & Save” program, which gives 15% off and free shipping for setting automatic delivery of regularly occurring purchases such as diapers or detergent. n Schwan’s Home Service: Offers frozen prepared meals (entrees, sides, snacks, etc.) delivered to your door. Delivery time depends on whether you’re ordering for mail or personal delivery. Loyalty program can cut costs of future purchases. www.schwans.com n Netgrocer: Delivers refrigerated, frozen and non-perishable groceries for $9.99/ order in our region, up to a $200 grocery bill. Shipping prices increase significantly after that. www.netgrocer.com
Food card program
n Shoprite from Home: Many locations offer delivery, and all offer curbside pick-up. Pickup is $10, while delivery is $16.95. www.shoprite.com
The chapter’s food card program is designed to provide emergency help during unforeseen financial emergencies.
n Giant Shop from Home: Store pickup only for $4.95/order in Camp Hill and Willow Grove, Pa. www.giantfoodstores.com
The program provides cards valued at $50 to $250, depending on family size, for Acme, Shoprite and Giant stores. People living with MS may apply for this assistance twice a year.
n Genuardi’s (Safeway): Delivers throughout the greater Philadelphia area. Fees range from $6.95 to $12.95, and a $50 minimum purchase is required. shop.safeway.com n Amazon Grocery: Offers dry goods through Amazon’s regular site, www.amazon.com. Shipping charges
gadget corner
GADGET CORNER: Online grocery shopping
This program is only available to families earning less than three times the 2009 poverty guidelines. To apply for the program or learn more, contact Mollie Burns at 1-800-548-4611 or mollie.burns@pae.nmss.org. TOLL FREE NUMBER 1 800 548 4611 11
mud run ms
RESOLVE TO CREATE A WORLD FREE OF MS AT MUD RUN MS PHILLY! Three months of 2011 have already passed -have you stuck to your New Year’s resolutions to get fit this year and try new things? You can do both (plus help create a world free of MS) at Mud Run MS Philly on June 11 and 12.
“It was the first time I’d ever done anything like that. I don’t know if I’ve had that much fun since I was a little kid.”
No matter what your fitness level, you’re sure to have a great time sloshing through the mud to complete the 10K boot camp-style obstacle course. Peter Hopkins, a choir director and church musician from Philadelphia, said the 2010 event was the most fun he’d had in years.
“It was the first time I’d ever done anything like that,” he said. “I don’t know if I’ve had that much fun since I was a little kid.”
“Lots of people know my wife and her struggle with MS and how she perseveres over it,” he said. “They were very generous because of that.” Hopkins also saw the event as a great way to take care of himself. He was diagnosed with type 2 diabetes and decided it was time to get serious about fitness. Training for and participating in events like the Mud Run have dramatically improved his health, he said. Though Hopkins was not running competitively, he and his trainer Mike McLoughlin from Radius Fitness took training for the event seriously. They trained outdoors frequently from early spring to June, making their own muddy obstacles on bike trails in New Jersey. “We just practiced in it, jumping in and out of holes and carrying buckets around and climbing things,” Hopkins said. “That was pretty intense.” The training paid off. At 51 years old, he was able to pass many 20- and 30-somethings on the course.
Because it can be run competitively or as a chance to have fun playing in the mud, this event is perfect for people of different fitness levels, men and women, people with MS and those who have never heard of the disease. Hopkins thought participating in the Mud Run would be a great way to support his wife Paula, who was diagnosed with primaryprogressive MS seven years ago. In fact, he was the run’s top individual fundraiser in 2010, raising $1,980.
12 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Peter Hopkins at Mud Run MS Philly 2010
Participants at Mud Run MS Philly 2010 “Most of the people around me were half my age, and I liked beating them,” he said. Hopkins encourages everyone to give Mud Run a try this year. “You can be any speed or any level,” he said. “If a particular obstacle just looks like something you don’t want to do -- if you’re afraid of heights or something -- you can just go right around it. But if you’re like me, you’ll find you want to at least try them all, and you’ll probably be able to do it.” Hopkins and McLoughlin are welcoming all non-competitive DGAP runners to join their Radius Fitness team.
REGISTER NOW! Visit MudRunMSPhilly.com or call Sheila Casey at 1-800-548-4611 to learn more and register.
mud run ms
GET FREE TRAINING SESSIONS AT RADIUS FITNESS For every $25 you donate to the Radius Fitness team, you’ll receive one free group workout session with Mike McLoughlin at Radius Fitness on 2nd Street in South Philadelphia. There is no limit to the number of free workouts you can earn. The donation workouts will be held every Saturday through June 5 at 12:30 p.m. A receipt or some proof of your donation will be required to attend the free workouts. If you’re not interested in joining a group workout, you may pass it along to a friend or family member to attend. Contact Mike directly at mmcloughlin2@me.com to reserve your place at any of the group workout sessions. Visit RadiusFitness.com to learn more about Mike and his studio.
VOLUNTEERS NEEDED! We need 250 volunteers to make this event happen. There are many jobs available that allow you to stay clean and dry. Others along the course put you in the middle of the action. If you’re interested in volunteering for one or both days, visit MudRunMSPhilly.com or call Sheila Casey at 1-800-548-4611.
TOLL FREE NUMBER 1 800 548 4611 13
fundraising
David Osmond keynotes WAMS Luncheon Just a few years ago, singer David Osmond was paralyzed in a wheelchair, afraid his performing days were behind him.
But due to circumstances he can only call miraculous, Osmond is on his feet and on stage again. He will perform and give the keynote speech at the Women Against MS Luncheon on May 3 David Osmond of the at the Sheraton – Osmond Family Philadelphia City Center, honoring Woman of Spirit Reneé Amoore. Osmond, part of the second generation of singers in the famous Osmond family – and a second generation living with MS – still must cope with symptoms including crushing pain in his legs. But his outlook is decidedly optimistic. “MS is one of the greatest things that has ever
Hear more of David Osmond’s story at the Women Against MS Luncheon. Buy your tickets or learn more at http://main. nationalmssociety.org/WAMS. 14 JOIN THE MOVEMENT: nationalMSsociety.org/pae
happened to me because it has given me a new perspective on life,” he said. “I feel very fortunate to be able to share my story.” Osmond’s experience with MS started 23 years ago when his dad, Alan, was diagnosed with the disease. His own diagnosis in 2006 at age 26 quickly put him in a wheelchair, as the crushing feeling made its way from his toes to his chest and arms. He could no longer sing or play the guitar. As his condition continued to worsen, Osmond changed his diet and lifestyle dramatically with detoxification, supplements and natural therapies. At the same time, his doctor put him on a five-day “steroid blast” to reduce the inflammation in his nervous system. The treatment allowed him to shuffle with a cane, but two months later, he was back in the chair. Desperate to walk on his fast-approaching wedding day, he asked the doctor to try again. The therapy worked, and this time, his condition continued to improve. “I do believe miracles happen every day, and I do believe I’m living one every day,” he said. Performing at WAMS events across the country nourishes his spirit and gives him energy to continue his fight against MS, he said. “I feel uplifted, empowered and blessed to meet so many people facing the same challenges I do – I feed on that,” he said. “That’s why we have these luncheons, to all get together and share that camaraderie and know we have that support as a family.”
fundraising
ARE YOU AN MS LEADER?
T
he MS Leaders Campaign is seeking upwardly mobile business professionals to embark on a fundraising campaign to benefit local people living with MS. We welcome nominations from South Jersey to the Lehigh Valley for this important program, which raises awareness and funds for the programs and services we provide. We’ll be holding networking kickoffs throughout the region this spring for confirmed and potential MS Leaders to learn about the campaign, meet past participants and chapter board members and get inspired about
this exciting and enriching way of helping create a world free of MS. Participants who meet our fundraising goals also will be honored at one of two award ceremonies featuring personalities such as former 76ers President Pat Croce and WFMZ Anchor Rob Vaughn.
Pat Croce (left) with top Philadelphia Leadership Campaign fundraiser Mike Spaeder
MS Leaders also benefit from networking opportunities with other community-minded professionals throughout the campaign, a profile in their local business journal and the chance to demonstrate their civic engagement and philanthropic commitment to their colleagues and clients.
Nominate yourself, a friend or a colleague at our website, http://main.nationalMSsociety.org/msleaders or contact Kristina Fransel at 215-271-1500 to find out about the networking kickoff near you.
Rob Vaughn (right) with top Lehigh Valley Leadership Campaign fundraiser Lou Vannicola
Annual report now online The Greater Delaware Valley Chapter’s 2010 Annual Report is now available online at nationalMSsociety.org/pae. (Click on the “About This Chapter” link on the left to find it.) The annual report recaps activity across our chapter in 2010, including a broad range of new initiatives designed to help people, engage volunteers and spread our message in as many ways as possible. TOLL FREE NUMBER 1 800 548 4611 15
awareness week
Get ready for Ms Awareness What does MS mean to you? What moments has it stolen? What abilities has it diminished? The Greater Delaware Valley Chapter is launching a groundbreaking MS awareness campaign aimed at presenting MS like it really is – an unpredictable disease that can be lifechanging for many of the people it affects, both directly and indirectly. We’re introducing the first phase of this campaign on billboards and radio in the Lehigh Valley in March to coincide with MS Awareness Week. We will be conducting
aggressive media outreach within the Philadelphia market, including appearances on WOGL, CBS3, KYW 1060 and Comcast Newsmakers.
Join the conversation and let us know what MS means to you. Visit MSmeans.org to share with the world how the disease has affected your life.
The second phase will come in September, when we blanket the Philadelphia region with messages about what MS means. With our highest profile event, Bike MS: City to Shore Ride, at the end of the month, there’s no better time to raise MS awareness in our community. Let us know what you think of the campaign by e-mailing pae@nmss.org.
Raise awareness at special events We’re planning several ways you can get involved in MS awareness during March. n MS Employment Conference: Hundreds of people will gather in Mt. Laurel, N.J. on March 12 for our chapter’s first employment conference and mini job fair, made possible by 16 JOIN THE MOVEMENT: nationalMSsociety.org/pae
the Kessler Foundation. The conference is designed for people at every point in the employment spectrum, from those who are currently working to jobseekers. At press time, registration was expected to close on February 28; check online at MSworks.org to see if there’s still space available or to sign up as a volunteer. Podcasts of the workshops will be available online for people who aren’t able to attend. n Lobby Day in Trenton: N.J. residents can take advantage of this opportunity to learn about the legislative process, meet with their legislators, find out why advocacy is so important to effecting change and see how they can be more involved in creating a world free of MS. Lobby Day will be held March 14 with bus service provided from Glassboro and Marlton, N.J.; contact Ellen Mitchell at 1-800-548-4611 to register or learn more.
Turn it orange You hold the power to raise MS awareness in your community and at your company. Some ideas for turning it orange this month: n Hold a “wear orange” day at work and hold an MS awareness party with orange refreshments, an MS quiz and prizes n Update your Facebook status with what MS means to you and change your profile picture to an MS awareness image. Download them at http://main. nationalmssociety.org/awareness.
n Write a letter to the editor about what MS means to you and encourage the community to register for Walk MS n Organize a community fundraiser. See the article on page 20 to learn more.
awareness week
Week, March 14-20
Get active n Register to walk or volunteer at Walk MS at walk4MS.org and invite three friends or family members to participate with you n Save the date to run, volunteer or join the party at Mud Run MS Philly on June 11 & 12. Learn more at mudrunMSphilly.com n Call Volunteer Engagement Manager Kathie Cronk to talk about how you can contribute your professional and personal skills and expertise to help the Greater Delaware Valley chapter better serve local people living with MS
Congratulations! Congratulations to our essay contest winners, who will represent their states at the 2011 Public Policy Conference. Our New Jersey winner is Pamela Trosino, and our Pennsylvania winners are Sarah L. Gibbons, Robert Pfisterer and Diane Hanna.
We want to know Let us know how you celebrated MS Awareness Week 2011 by e-mailing pae@nmss.org. Be sure to include photos of your festivities! TOLL FREE NUMBER 1 800 548 4611 17
ADVOCACY
THE VIEW FROM WASHINGTON
T
he political climate in Washington, D.C. is a little chilly, but advocates are determined to continue making their voices heard on issues that affect people living with MS.
Accomplishing this year’s federal priorities is probably more difficult than it has been in the past, but Chiarello is optimistic that things will pick up in the second half of the year. The federal advocacy staff also looks at the new class of freshman representatives as a good opportunity to spread MS awareness.
A deeply divided Congress means a difficult environment for advancing the Society’s priority policies, said Lauren Chiarello, the Society’s director of federal affairs, and Laura Weidner, federal relations manager.
“Whatever political party they fall into, it gives the Society a lot of opportunities to educate them about MS and the needs in the community,” Weidner said.
In addition to ranking bills based on the needs of people living with MS, they also have prioritized potential issues to see which would have the greatest political viability, Chiarello said.
Still, the new Republican majority in the House is trying to slow or reverse the progress of the Health Care Reform Act, which offers many benefits for people living with MS.
Priorities at this month’s Public Policy Conference include:
Appropriations, or deciding which projects get funded, is the biggest way the House could affect health-care reform going forward, Chiarello said. Without money, programs such as the new CLASS long-term care initiative can’t be funded.
n Congressional Directed Medical Research Program: The Society has secured $10 million for MS research to date, and advocates will be lobbying for 2012 appropriations n Adult Day Enhancement Act: This act provides funding for day programs for a younger adult population. It could fund grants to provide MS-specific day programs or other add-ons at centers such as the MS Wellness program at Good Shepherd Rehabiliation Network in Allentown. n Medicare neurologist incentive: We are supporting neurologists in their push to receive the same reimbursement for coordinating care that geriatricians and primary care doctors receive 18 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Watch for hearings in the House and Senate regarding the health-care bill. “There will be a lot of back and forth and rhetoric, but we need to put this on the list of possible options to educate people,” Weidner said. Integral to education and awareness-building is sharing the stories of people who would benefit or be hurt by a bill, she said. “To hear firsthand how it would personally affect them, whether it’s pre-existing conditions or how much they pay out of pocket, is very important in translating how the Society’s priorities affect real people,” she said.
The state budget includes a $4.5 billion budget gap, a new Republican governor intent on conservative spending and no tax increases, upcoming contract negotiations with state workers and major debts coming due in October. The end result is an uphill climb for MS advocates and issues. Priorities will include:
providing feedback for the Pa. Department of Public Welfare as it writes regulations modeled on a similar service for the elderly.
Advocacy
2011 PENNSYLVANIA ADVOCACY CHALLENGES AND PRIORITIES
n MS activists are part of a coalition of people hoping to crack down on contractors who are marketing themselves as certified aging in place specialists but do not actually have the experience or qualifications to correctly perform home modifications for people with disabilities. There also is an initiative under way to educate builders on home modifications and universal design. Continued on page 20
n Protecting the attendant care waiver, which provides important personal care options for Pennsylvanians with disabilities. n Lessening the impact of welfare cuts for people with disabilities, who make up 69% of Medicare waivers. A recent report showed rampant fraud in the welfare program, and it’s likely to be a target for spending cuts. n Finding new funding sources for AdultBasic, a state-run health insurance program for the working poor that covers 42,000 Pennsylvanians. At press time, AdultBasic was scheduled to close on Feb. 28 due to lack of funding. n Funding and implementing the Adult Protective Services Act. After many years of advocacy, the bill – now known as Act 70 – has been signed into law and will go into effect April 7. However, no funding has been attached to it, so MS advocates will be searching for $6 million in funding and TOLL FREE NUMBER 1 800 548 4611 19
ADVOCACY
Continued From PAGE 19 2011 NEW JERSEY ADVOCACY CHALLENGES AND PRIORITIES Local issues will be at the forefront of New Jersey advocacy in 2011. The chapter continues to build its County Captain program in the Garden State. Pam Trosino has volunteered to head up advocacy issues in Burlington County, Joyce Colding is the new Gloucester County Captain and Kristina Liwoch is representing Atlantic County. We are now seeking county liaisons to work with the captains. The volunteers who fill this role will keep their ears to the ground in their communities and bring potential advocacy issues to the captain’s attention. There will be an interest meeting on April 14 for Burlington County residents who might be interested in filling this role. Our South Jersey advocates also need people to share stories of what MS means to them and the people they care about. If you or someone you know has a compelling story to tell, contact Maria Soares at maria.soares@pae.nmss.org or 1-800-548-4611. The primary statewide priority this spring is supporting the implementation of federal funding to help non-elderly residents with disabilities move from nursing homes to independent living. U.S. Senators Frank Lautenberg and Robert Menendez have announced that the New Jersey Department of Community Affairs will receive $936,420 in federal Housing and Urban Development (HUD) funding to expand affordable housing options for Americans with disabilities and assist with their transition from nursing homes into independent living situations. 20 JOIN THE MOVEMENT: nationalMSsociety.org/pae
You were one of the first legislators to join the MS Caucus and you’ve been very supportive of issues concerning people living with MS. Why have these topics been important to you? When you sit and meet with constituents who have personal stories about MS, I don’t know how you can walk away untouched and without making a commitment to help and to make a difference. Fortunately I’m in a position to do both – to help and to make a difference. I’ve been very moved by the personal stories of constituents who have come in and met with me faceto-face, and I’m determined to do what I can to give them a better situation. What was your experience like at Walk MS in Ocean City last year? It was an awesome experience to have so many people who are
gathered together with a single purpose who each in their own way are making a positive difference. These are great events for the community. If you don’t walk away with a high level of energy and enthusiasm from that, you’re not going to get it. What do you think government can or should do to provide people with disabilities with the care they need? The most important thing we can do is to find a cure for MS and to make sure the research dollars continue to be there so we can be proactive and stop something bad from happening, rather than help out after the situation occurs. We’ll certainly continue to look at ideas presented by constituents as to what ideas make sense for us to be involved in. What are your other legislative interests? I’ve taken an interest in the health field with rehab hospital issues. There was a move by CMS a couple of years ago to change how rehabs did business, which essentially would be shutting them down. I took a point position on that and it took something like seven years, but we did get a solution.
Advocacy
MEET YOUR LEGISLATOR U.S. Representative Frank A. LoBiondo New Jersey District 2 What’s the best way for constituents to work with you? Call me, meet with me, approach me at events. I’m at numerous events in the district. I’m always anxious to hear personal stories and personal point of view, to let people know that as their federal representative, I’m very happy to advocate on their behalf, but I can’t do that if I don’t know they have an interest. Why is it important for people to get involved in advocacy? Legislation has a bill number. It’s pretty impersonal. It doesn’t speak to the human cost of someone hit by MS. If I have a personal story I can convey – if I have an image of the individual or the family in my mind who’s affected by this, it’s much easier to advocate for and convey the sense of personal tragedy. It really does make a tremendous impact for me and I’m very anxious to know more of their personal story. To share your personal story for MS advocacy, call 1-800-548-4611.
TOLL FREE NUMBER 1 800 548 4611 21
services
STAY AT HOME AND STAY ABLE WITH HOMEABLE HomeABLE is a new financial assistance program designed to keep you safe and independent in your home. The program provides grants from $2,500 -$8,500 for accessibility modifications including: n Outdoor ramps/elevators n Doorway widening n Bathroom modifications n Kitchen modifications To apply, visit http://main. nationalMSsociety.org/homeABLE or contact Na’Tasha Sanders at 1-800-548-4611. “My new bathroom is heaven-sent. I absolutely love it. I was an independent person, and I feel that I’m pretty independent again.” ~ Pamela Trosino HomeABLE recipient
22 JOIN THE MOVEMENT: nationalMSsociety.org/pae
TECHNOLOGY BRINGS
W
hile the Greater Delaware Valley Chapter is focused on providing in-person programming in smaller, local venues that allow us to reach deep into the communities we serve, we also are placing an increased emphasis on delivering news and education via teleconferences and online webinars. These new programs are designed to be more convenient for you to attend. While it may be difficult for someone in the suburbs to make it to the city or for someone in Allentown to make it to a program in South Jersey, just about everyone can get on a phone and call in to a toll-free number to listen to the program. What’s more, webinars and teleconferences allow us to serve more people. Programs in hotel conference rooms may accommodate 100 guests, but teleconferences and webinars can accommodate a virtually unlimited number of people. Additionally, these programs give our guests privacy. People living with MS who are not ready to go public with their diagnosis can remain anonymous and still get the important information they need. And shy people who don’t want to ask a question in front of a crowded room might feel less intimidated over a phone line or in an online chat room. Finally, both program types allow us to record the content and post it on our website so that it can be accessible at any time for people who want to review a certain topic or who were not able to attend at the time it was held.
These changes strengthen our overall chapter strategy of reaching out to as many people as possible and becoming even more interwoven into the communities we serve.
Programs
EDUCATIONAL PROGRAMS TO YOU
Frequently Asked Questions What is a teleconference? Teleconferences are programs that are held between callers in more than one location. A landline or cell phone is all you need to access the program content. What is a webinar? A webinar is a seminar held over the Web. These programs require an Internet connection to view the online content. What if I can’t connect to the Internet? People who don’t have access to the Internet can still call in to the teleconference portion of a webinar to hear the presentation, but they will miss out on the documents or presentation files shared by the presenters. What if the presenter or I encounter a technical difficulty? If you encounter a technical difficulty, you can hang up or log off, then try to reconnect. If that doesn’t work, you can listen to the program recording on our website in the following days. If the presenter has a technical difficulty, we will do everything we can to get the program started in a timely manner and e-mail all registered attendees to make them aware of the problem. If we cannot fix the issue, we will try to reschedule the program. In
some cases, we may have to cancel it. Will the program materials be available ahead of time? Yes. In most cases we will e-mail the program materials to our registered guests a few days before the program date. If you require a hard copy to be mailed to you, please call the chapter office. I prefer face to face contact with chapter staff and others living with MS. What’s available for me? We are committed to meeting the needs of as many clients as possible. To that end, we will still hold local programs throughout the chapter area and feature many more community-sponsored programs and self-help groups. Call the chapter at 1-800-548-4611 or visit nationalMSsociety.org/pae for more information about upcoming programs and self-help group meetings. TOLL FREE NUMBER 1 800 548 4611 23
Research
THE WORLD OF MS RESEARCH In October, more than 5,500 neurologists and other investigators from around the world covered almost every aspect of current MS research in some 900 scientific presentations and posters at the annual ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) conference in Gothenberg, Sweden.
Some research highlights A newly completed two-year, phase III trial of teriflunomide, an oral compound that inhibits specific immune cells, in 1,088 people with relapsing MS, found positive results. Dr. Paul O’Connor of the University of Toronto reported that two different doses of teriflunomide significantly reduced the rate of MS relapses by up to 31.5% compared to placebo, and that the higher dose reduced the risk of disability progression by 29.8%. It also reduced the risk of new MS lesions and reduced disease activity. Additional clinical trials are under way. Other medications also show promise at various trial stages. An oral compound called firategrast caused a significant decrease in the rate of new MRI-detected lesions in a six-month trial in relapsing-remitting MS. Ocrelizumab, which targets and kills immune B cells, reduced new lesions by at least 89% over placebo in a 24-week trial. In a separate session, Dr. Antonio Uccelli of the University of Genoa described attempts to stop MS progression using infusions of an individual’s own bone marrow or blood stem cells (mesenchymal cells). Dr. Uccelli is now 24 JOIN THE MOVEMENT: nationalMSsociety.org/pae
collaborating on a study that he hopes will show that these cells are beneficial.
Restoring function Several research teams reported progress in improving quality of life and specific symptoms, including fatigue and mobility issues, through group physical therapy, and supervised aerobics, yoga and resistance training classes. Another study suggested that memory training can improve brain function. Many reports focused on CCSVI (chronic cerebrospinal venous insufficiency), with mixed or conflicting results. Lab studies identified additional molecules that may block the ability of myelin-making cells to repair damage caused by MS; selectively turning them off could be useful for encouraging myelin repair in people with MS.
Risk factors Dr. Trond Riise of the University of Bergen reviewed the growing list of factors that may contribute to an individual’s susceptibility to developing MS, and pointed to current studies that may lead to a better understanding of the interactions and variations of these multiple risk factors. For a complete report on the conference, search “ECTRIMS” at nationalmssociety.org.
You can find conversations with MS researchers and public leaders, as well as recordings of presentations from annual conferences, research updates and more on our podcast page at http://pae.podbean. com. If you use Google Reader or a similar program, you can also sign up for an RSS feed to send you new content as it’s posted. Our podcasts are also now available for free in the iTunes store (search for “Greater Delaware Valley Chapter” to subscribe to our feed). Subscribing to our feed will allow iTunes to automatically download any new podcasts to your library and sync them to your iPod, iPad or other mobile device.
Recent podcasts: n Pollutant may trigger MS, hypertension drug may treat it: Dr. Riyi Shi, professor of neuroscience and biomedical engineering at Purdue University, discusses his latest study that found the pollutant acrolein may cause symptoms of MS and that hydralazine, which is FDA-approved to treat high blood pressure, may be able to treat MS. n Two potential new MS therapies on the horizon: Dr. Linda R. Watkins, distinguished professor in the Department of Psychology & Neuroscience and Center for Neuroscience
at the University of Colorado at Boulder, discusses the promising results of her studies involving anti-inflammatory drug compounds to reverse the symptoms of MS in mice.
Research
LISTEN TO THE LATEST MS RESEARCH NEWS ON YOUR MOBILE DEVICES
n 2010 Annual Meeting and MS Treatment Update: Learn about the successes and challenges of the past year and the latest treatment news, including the potential impact of oral treatments and other therapies in the drug pipeline, CCSVI and other treatment issues that interest people living with MS and their families. n Progressive MS: An Overview Increase your knowledge of progressive MS symptoms, symptom management, emotional issues, coping strategies, family issues and resources for when family help is not enough. n An X-rated Guide to Living With MS: Living and living well with progressive MS are two different things. Learn how you can make creative compromises to make life more manageable and more enjoyable. Using words like “explore,” “execute” and “expand” has never been so sexy! Listen to our podcasts at http://pae.podbean.com or subscribe to our feed on iTunes (search for “Greater Delaware Valley Chapter). TOLL FREE NUMBER 1 800 548 4611 25
FUNDRAISING
Create a fundraiser to remember Did you know there are literally thousands of ways you can help? People who want to contribute to the mission to end MS are invited to dream up and produce original events that raise money for research and care. Every year, all over the country, volunteers organize and host golf, billiards and bowling tournaments, auctions and raffles, dinners, concerts, rummage sales, wine tastings, barbecues, motorcycle fun rides, skiing days and dances. Other events include a trap and skeet fun shoot, a bratwurst and bake sale, a boat show and a car show. A sailing party in Minnesota and the 7th Annual Bell Family Rabbit Hunt in Wisconsin each raised thousands of dollars. Holiday themes are also popular, such as Easter egg hunts or Halloween parties with a pay-to-enter costume contest. The types of benefits to create are limited only by the imagination. “The idea is to turn someone’s passion into a fundraiser,” said Betty Ross, the Society’s associate vice president for campaign development.
26 JOIN THE MOVEMENT: nationalMSsociety.org/pae
These events may raise anything from a few hundred to tens of thousands of dollars. There’s no minimum required and certainly no maximum, Ross said. And you don’t even have to create a brand-new event, she added. You can add a fundraising element to pretty much any existing occasion. How much time it takes to prepare depends on how elaborate the plans are. They can be as simple as asking friends to pay a few dollars at the door to attend a private party. On the other hand, a large-scale gala might take four to six months, or even longer, to plan. “We have a lot of cool Society events, but people have their own interests,” said Ross. “Community events reflect how you want to be involved.”
Have a great idea? Call Kristin Marnie at 1-800-548-4611, ext. 161 and ask for the Community Event Organizer Guidelines and the Community Event Information Form, or visit http://nationalMSsociety. org/community. Upcoming Community Fundraisers Cici’s Pizza Buffet Days To benefit Walk MS, Walk This Way March 17 Cici’s Pizza Buffet 818 Haddonfield Rd., Cherry Hill, N.J. 08002
Many thanks to all of our volunteer fundraisers who are helping create a world free of MS. Lisa and Barry Steinman revived their annual “Get Masked for MS” gala fundraiser in 2010, raising a tremendous $71,771 to help create a world free of MS. The Steinmans, honored in 2009 with induction into the Society’s Volunteer Hall of Fame, hold the annual event in honor of Lisa’s sister, who’s living with MS. Since 2004, they have raised more than $300,000 for the Greater Delaware Valley Chapter’s programs, services and research for local people living with MS. This year’s fundraiser featured a hippie theme, “Peace, Love and a World Free of MS.” In addition to dinner with dancing, the Steinmans held an silent auction and a costume contest to make the night festive.
Beth Malikowski and her daughters, Kristen and Megan, raised $1,050 by making Christmas wreaths for their neighbors in and around Downingtown, Pa. “It feels great to be able to send such an amount that I know will benefit many,” she said. The family will be making wreaths again in 2011. You can add your name to the interest list by e-mailing Beth at beth.malikowski@siemens.com. The Newton Rotary Club in New Jersey donated $100 to the chapter as part of the proceeds from its Winter Golf Outing Fundraiser with the United Way of Sussex County. Rowan University’s hockey team raised more than $600 playing in the second-annual New Jersey Outdoor Pond Classic. This year’s opponent was Monmouth University. Both teams have connections to MS.
Chili’s Give Back Night To benefit Walk MS, Pathfinders
MS Night at the Phillies To benefit Challenge Walk MS, Irish Steppers
March 22, 11 a.m. - close Chili’s 2601 Street Road Bensalem, Pa., 19020
May 25, 7:05 p.m. Citizen’s Bank Park Philadelphia, Pa.
*Please e-mail roberts@temple.edu for a voucher.
FUNDRAISING
Community fundraising all-stars
Visit phillies.com/irishsteppers to purchase your tickets. TOLL FREE NUMBER 1 800 548 4611 27
FACE OF MS
Face of MS: Stacy Palmer Barton
Stacy Palmer Barton
When freshman Congressman Jon Runyan (R-NJ) selected Stacy Palmer Barton as his new chief of staff, for the second time in her career Barton became one of a few AfricanAmerican female chiefs of staff for a Republican member of Congress. Making her second appointment to chief of staff even more groundbreaking is the fact that Barton is living with MS. A veteran Capitol Hill staffer, Barton was diagnosed with MS in 2005 when she was chief of staff for Rep. Michael Turner (R-OH). Now as the top staffer in Congressman Runyan’s Washington, DC office, she is responsible for building and managing the staff and serving as an advisor to the Congressman and his team.
As someone living with MS, how do you cope with the stress of your daily life as a Capitol Hill staffer? I manage stress by practicing yoga and Pilates. I also see an acupuncturist and a chiropractor on a weekly basis, and do my best to eat properly. Like everyone else, it’s a constant struggle and I’m certainly guilty of overdoing it! And on the really stressful days a cheeseburger is more appealing than a salad. Learning how to manage the stress is an ongoing process and I’m always exploring ways to do it better. I also have a tremendous support system to help balance work and family. My husband is a great support, and both of my parents are an active part of my life and the lives of my two children – which really helps.
28 JOIN THE MOVEMENT: nationalMSsociety.org/pae
How were you diagnosed with MS? Even after initial symptoms emerged prior to 2005, subsequent visits to several neurologists and numerous MRIs, I never anticipated MS. But in 2005, I become severely ill and had difficulty walking. I couldn’t walk up and down the stairs at home without holding onto the railing, and I even had difficulty making the trek from the House of Representatives parking garage to my office. I also experienced a level of fatigue that was almost unbearable. At that point, I started to suspect MS and decided to see a specialist who I had been referred to by a colleague, whose father had been a researcher in the field of MS for quite some time. I walked into the appointment and the doctor said to me, “I’m not sure how you’re still functioning. You clearly have MS, and you have clearly had these symptoms for a very long time.
What was your reaction? I knew that if I was able to walk into the doctor’s office after having lived with MS for so long undetected, MS would not get the best of me. Although the diagnosis caused tremendous anxiety about my future, I had to make an immediate decision to fight and do everything within my control to continue to live a productive life. I have two young children, including a daughter with autism. There was simply no way that I could handle this in any way – other than to fight and keep moving forward. What symptoms do you have now? I have a lot of numbness in my limbs and hands, and my balance is not incredibly stable. I sometimes have difficulty with walking and controlling the pace of my walking. Like many people living with MS, fatigue is always a significant problem. Like others, fatigue is often a reliable sign that I need to slow down. How and why did you decide to be public about your diagnosis? I think it’s important for people who have benefited from all that we know about this disease and the resources that are now available to help manage it - to be public and open about sharing our experiences. MS remains a very frightening diagnosis for many people, and I hope that I can help in some small way to perhaps ease those anxieties for the newly diagnosed. This is especially true for mothers of young children who also work outside of the home in high-stress jobs.
Did you have any reservations about taking the job as Rep. Runyan’s chief of staff? I never doubted my ability to perform the duties of the job. However, there is no question that concern about long-term health was a significant factor in my leaving the Hill last year. The bottom line is that I love what I do. I’m very fortunate to be able to do something that I absolutely enjoy! It’s a great opportunity, a tremendous honor to serve in this capacity and well worth the effort!
FACE OF MS
Why were you even at work today?” He sent me directly to the emergency room. I was admitted to the hospital where I remained for a week.
What message does your success send to other young women diagnosed with MS? Although MS impacts people in different ways, for many people some symptoms can be managed. The most important component of managing this disease is maintaining a sound and positive outlook. The physical symptoms will come and go – but the key to coping with the worst of it is doing all that you can to maintain a sound mental outlook.
Share your opinion, shape this newsletter The Greater Delaware Valley Chapter is seeking volunteers to serve on our new MSConnection editorial board. Participants will meet quarterly with chapter staff to help shape the content of the newsletter by brainstorming article topics and suggesting resources. Members also will have the opportunity to provide feedback on each finished issue. To apply, e-mail Editor Anne Krishnan at anne.krishnan@pae.nmss.org. Be sure to explain why you’re interested in taking on this role and what you can contribute to the team. TOLL FREE NUMBER 1 800 548 4611 29
Make your mark in 2011! We need participants, volunteers and donors to join the movement.
R EGISTE R TO D AY AT MoveforMS.org
Walk MS
April 17 & May 1
Mud Run MS Philly
June 11 & 12
Women Against MS Luncheon
Bike MS: City to Shore Ride
May 3
September 24 & 25
MS Leaders Campaign
Challenge Walk MS
Summer and fall
30 JOIN THE MOVEMENT: nationalMSsociety.org/pae
October 22-23
Victory scooter: Red body, very comfortable seat. In good condition. Comes with a basket, power cord, lock and tires that don’t go flat. Needs new battery. FREE. Located in Phila. Call Tish at 215-563-9505. Jazzy 1120 motorized wheelchair: Purchased in 2001. Only used three times for about two hours each time. In excellent condition, looks like brand new. Has a champagne chassis with a two-tone tan seat and high back. Has two brand new batteries. Asking $1,200. Located in Nazareth, Pa. Call Kathy at 610-837-7210 or 610-597-7968 and leave a message.
Roho cushion: Like new. 18” X 20” available to fit most wheelchairs. Asking $100. Located in Elkins Park, Pa. Contact Trish at 215-635-5893 or cookiemother@hotmail.com. Theracycle 100 motorized exercise bike: Used only three times. Still brand new. For able bodied or people in wheelchairs. Asking $2,000 or best offer ($3,000 new). Located in South Jersey. Call Mike at 215-378-4712. Rascal 318 power wheelchair: Never used. Right-hand operation. Asking $750. Located in Chesterfield, N.J. Call Bill at 609-291-9198.
Bruno Power Lift Gate: Couple of years old, used, works great. Can hold up to 350 lbs. Exterior platform. Need a van or large SUV with a hitch on the back to carry it. FREE. Located in Levittown, Pa. Call Charles at 215-486-5055.
1995 Dodge Caravan: Handicappedaccessible. Great for local commuting, doctor visits, shopping, etc. 86,000 miles. Asking $3,800 OBO. Located in Chesterfield, N.J. Call Bill at 609-291-9198.
Quickie 18” wheelchair: Swing away removable footrests, rear anti-tippers, seat belt, removable desk arms and brake extensions. Seat is 19.5” deep and 21” high. Excellent condition. Jay foam cushion included. Asking $200. Located in Elkins Park, Pa. Contact Trish at 215-635-5893 or cookiemother@hotmail.com.
Electric HOYER lift: Comes with sling. Battery backup. Asking $750. Located in Chesterfield, N.J. Call Bill at 609-291-9198.
Blue Invacare 18” Tracer SX5 high back reclining wheelchair: Swing away removable elevating leg rests, rear antitippers, seat belt and brake extensions. Seat is 17.5” deep and 19.5” high. Excellent condition. Jay foam cushion included. Asking $400. Located in Elkins Park, Pa. Contact Trish at 215-635-5893 or cookiemother@hotmail.com.
CLASSIFIEDS
Classifieds
BRUNO Electra-Ride Elite stairlift: 400 lb. weight capacity. Direct drive motor/ gear box. Has battery charger and two remote controls. Extends 14 steps. Asking $750. Located in Chesterfield, N.J. Call Bill at 609-291-9198. Permobil Chair-man Entra: Seat tilts and raises, back also tilts. Right-hand controls. Two seat cushions included for best fit. Vinyl on headrest and back slightly worn but no cracks or tears. Chair works great, strong battery. Separate battery charger included. Asking $500. Located in Pottstown area. Call Sue at 610-495-7117. TOLL FREE NUMBER 1 800 548 4611 31
. ave money
Help upase@snmss.org to reclyeiv. e
Free Matter for the Blind or Handicapped
Contact y e-mail on with b r e t t le s w dress this ne ame and ad
Our community. Our commitment. Come together at Walk MS 2011 to celebrate your friends, neighbors and loved ones living with MS. This fun family event supports local services, programs and research and makes a powerful statement: we want to do something about MS now.
05.01
Pocono Raceway SNITEW NEW E START Long Pond, Pa. Ridley Creek State Park Media, Pa. (5k run) Tyler State Park Newtown, Pa. Elmwood Park Zoo Norristown, Pa. Radnor Corporate Center SNITEW NEW E START Radnor, Pa. Lenape Park Sellersville, Pa. Moorestown High School Moorestown, N.J. Washington Lake Park Washington Township, N.J.
register today! walk4MS.org or call 1-800-883-WALK
SUNDAY
to create a world free of MS
SUNDAY
walk
04.17
r full n . Include you ly” in the subject line n “e-mail o
Coca-Cola Park (Home of the IronPigs) Allentown, Pa. North Penn High School Lansdale, Pa. Philadelphia Museum of Art Phila., Pa. (5k & 10k Run) Gring’s Mill Rec. Area Reading, Pa. Valley Forge Area Valley Forge, Pa. East Goshen Twp. Park West Chester, Pa. (5k run) Ocean City Board WALK Ocean City, N.J. Medford Lakes Medford Lakes, N.J. Parvin State Park Vineland, N.J. Eastern High School Voorhees, N.J.