MSConnection 2015 Issue 3 by Kevin Moffitt

2015 ISSUE 3 DELAWARE, SOUTHEASTERN PENNSYLVANIA & SOUTH JERSEY

MSCONNECTION NEWSLETTER LOCAL ACTIVISTS TAKE ACTION TO SUPPORT THE ADA Life for someone living with a disability was very different before the Americans with Disabilities Act (ADA) was signed into law in 1990. “A cab could refuse to pick you up if you were in a wheelchair. There were no automatic doors, no ramps or curb cuts. Employers didn’t have to provide reasonable accommodations for someone in the workplace,” says Mara Brough, the National MS Society’s Senior Manager of Advocacy for Pennsylvania and New Jersey. “That’s why the ADA is known as the civil rights act for people with disabilities.”

CONTINUED ON PAGE 09

INSIDE 16 18 THIS ISSUE DIY PROGRAM RECAP

LENDING A HELPING HAND TO A LONG TIME FUNDRAISER

20 22

A VIEW FROM THE TOP

FACE OF MS: JEAN GRISWOLD

QUESTIONS FOR A CONGRESSMAN

MS CONNECTION: 2015 ISSUE 3

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SPECIAL ANNOUNCEMENT A great deal of information is distributed electronically - research and advocacy updates, programs and events, and perhaps most importantly of all, an electronic client newsletter. If we don’t have a valid email address on file for you, you are not able to receive this valuable information. Please call your chapter at 1-800-FIGHT-MS or email pae@nmss.org today to be added to our electronic distribution lists.

TAMI CAESAR ACCEPTS POSITION OF CFO

PHILADELPHIA OFFICE

WILMINGTON OFFICE

National Multiple Sclerosis Society 30 South 17th Street, Suite 800 Philadelphia, PA 19103 215-271-1500

National Multiple Sclerosis Society 2 Mill Road, Suite 106 Wilmington, DE 19806 302-655-5610

The National MS Society is pleased to announce that Tami Caesar has accepted the position of Chief Financial Officer. Caesar began her career at the Society in 1991 as the Operations Director of the Greater Washington Chapter, and in 1999 became President of the Mid Florida Chapter. For the past six years, Caesar has led the Greater Delaware Valley Chapter to a 42% increase in revenue.

appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

“With 24 years of broad, diverse experience at the National MS Society, Tami is uniquely positioned to lead us during this vital time. Tami brings outstanding strategic vision and demonstrated skills of successfully leading large, diverse teams,”

©2015 National Multiple Sclerosis Society, Greater Delaware Valley Chapter Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names

MSConnection welcomes letters to the editor. Send letters to kevin.moffitt@nmss.org or one of the addresses above. Include your name and a phone number or email address where we can reach you, if necessary.

NOTE: We may edit your letter for length and content.

03 commented Paul Weiss, the Society’s Chief Operating Officer. “While Tami sees the ‘big picture’ she also has the discipline and focus necessary for excellence in operational execution, with a proven track record of developing and implementing systems and processes.” Long seen as a leader amongst her peers, Tami has served on several Society task forces and committees, including the: Charting our Future Task Force; FY2016-2018 Strategic Plan Metrics Advisory Committee; Audit Task Force; Individual Giving Campaign Strategy and Implementation teams; and the National Marketing and Branding Review Committee. Tami recently completed her MBA at Villanova University’s Executive Management program. The search for the new president of the Greater Delaware Valley Chapter will continue through the fall. In the meantime, John Scott, former chapter president and current Chief Field Services Officer, will serve as the interim president of the chapter.

UPCOMING PROGRAMS

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MS SERVICE DAY PHILADELPHIA COUNTY, PA AND NEW CASTLE COUNTY, DE • OCTOBER 24 If you are living with MS in Philadelphia, PA or New Castle County, DE and need some help with household chores or small projects, volunteers from the Greater Delaware Valley Chapter are here to lend a hand. Projects include yard work, cleaning gutters, assembling equipment, other small repairs and more. Find out what a difference a day can make! Volunteers are also needed for MS Service Day. Find out how you can help by calling 215-271-1500 or 302-655-5610. Download the application at nationalMSsociety.org/ serviceday.

Below is a list of some of our upcoming offerings for people living with MS. Call 1-800-FIGHT-MS or visit calendarMS.org for more information or to register.

ADAPTIVE SAILING ADVENTURE BALTIMORE, MD • OCTOBER 13

Join us for an adaptive sailing trip with Downtown Sailing Center in the beautiful Inner Harbor in Baltimore, Maryland. There will be a lunch, training on how to work the boats and what to expect, followed by a sailing trip! Bussing to Baltimore from the 273 Park and Ride in Newark, DE will be provided.

2015 ANNUAL MEETING AND TREATMENT UPDATES CENTER VALLEY, PA • NOVEMBER 14 NEWARK, DE • NOVEMBER 18 PHILADELPHIA, PA • NOVEMBER 19 Celebrate the accomplishments of the past year, congratulate the key volunteers in the MS movement and get the latest news in research. Come together with your local community to find out how we are helping people living with MS. Register for one of these convenient locations by visiting calendarMS.org.

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UPCOMING FUNDRAISING EVENTS

NATIONAL CAREGIVERS MONTH

Participate, donate, or volunteer in events that fuel solutions for everyone affected by MS. Call 1-800-FIGHT-MS or visit nationalMSsociety.org/pae to learn more.

November is National Family Caregivers Month. During this month, remember to thank your friends, family and neighbors who provide care to others.

TAKE A BITE OUT OF MS VOORHEES, NJ • OCTOBER 15 MSQUERADE WILMINGTON, DE • NOVEMBER 13 FINISH MS AT THE PHILADELPHIA MARATHON PHILADELPHIA, PA • NOVEMBER 20-22 PNC BANK THANKSGIVING DAY RUN/WALK FOR MS WILMINGTON, DE • NOVEMBER 26

The National MS Society has a guide SHOW YOUR CAREGIVERS aimed to provide education and support YOUR APPRECIATION to caregivers. Please visit our website www.nationalMSsociety.org and type “caregiver” in the search box.

DO YOU HAVE A CAREGIVER THAT YOU WANT TO RECOGNIZE FOR HIS OR HER OUTSTANDING COMMITMENT AND CARE? SEND US A ONE PAGE ESSAY ABOUT WHY YOUR CAREGIVER IS EXCEPTIONAL AND YOU COULD WIN A WEEKEND GETAWAY FOR YOUR CAREGIVER AND A GUEST! THIS CONTEST IS OPEN TO ALL CLIENTS IN THE GREATER DELAWARE VALLEY CHAPTER. FOR MORE INFORMATION, EMAIL STEPHANIE.BOYD@NMSS.ORG.

NEWS BRIEFS RESEARCHERS FUNDED BY THE NATIONAL MS SOCIETY BUILD ON COMMERCIAL PARTNERSHIP TO DEVELOP DIAGNOSTIC TEST FOR MS A team of researchers from around the country have published findings indicating the accuracy of MSPrecise® (Amarantus Bioscience Holdings, Inc.), a laboratory test under development for diagnosing MS. The study was funded by the Society, the National Institutes of Health, the Burroughs Wellcome Fund and DioGenix, Inc. (since acquired by Amarantus). Previous work on MSPrecise was funded by the National MS Society through its commercial research arm, Fast Forward. William Rounds and Nancy

Monson, PhD (University of Texas Southwestern Medical Center, Dallas) and colleagues report these findings in Gene (Early online publication, July 11, 2015). Further research will be needed to determine the value of MSPrecise as an aid to diagnosing MS.

SCIENTISTS DISCOVER IMMUNE SYSTEM NETWORK IN BRAIN University of Virginia scientists led by Dr. Jonathan Kipnis have uncovered evidence of a previously unrecognized network of vessels that facilitate immune system activity in the brain. The team showed evidence of this system, a network of “lymphatic vessels,” in both mice and people. This is a potentially groundbreaking discovery. Further research is needed to understand how and whether lymphatic vessels play a role in multiple sclerosis, and whether their existence presents new opportunities for stopping immune attacks involved in MS.

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THE EFFECT OF SALT ON MS MAY DEPEND ON GENES AND GENDER, SAY RESEARCHERS FUNDED BY THE NATIONAL MS SOCIETY

You can help by allowing your son or daughter to volunteer, or if you are over the age of 18, you can volunteer as an individual. This is a great opportunity to experience research priorities at CHOP and witness how your efforts directly improve the lives of those touched by MS. If you are interested, please email brainresearch@ email.chop.edu. n

Several reports have suggested that dietary salt can speed the development of the immune attack in an MS-like disease in mice. Now, National MS Societysupported researchers at the University of Vermont show that the mouse disease responded differently to a high salt diet, depending on their genetic makeup and gender. This study offers an important clue to teasing out whether reducing salt can inhibit MS immune attacks.

NEW RESEARCH BEING DONE AT CHOP The Clinical Research Team of the Neurology Division of CHOP is looking for control volunteers (individuals not living with MS or any other chronic condition).

VISIT US ONLINE AT NATIONALMSSOCIETY.ORG/ RESEARCH TO STAY ON TOP OF THE LATEST IN MS RESEARCH.

TAKE A READER SATISFACTION SURVEY TO WIN $100 TO KOHL’S INFLUENCE WHAT WE WRITE ABOUT IN MSCONNECTION! IT’S OUR GOAL TO PROVIDE YOU WITH THE MOST RELEVANT INFORMATION IN MSCONNECTION AND YOUR FEEDBACK WILL HELP US DO THAT. EVERYONE WHO COMPLETES THE SURVEY WILL HAVE THE OPTION TO ENTER INTO A DRAWING FOR A $100 GIFT CARD TO KOHL'S. CALL 215-271-1500 TO FILL OUT THE SURVEY OVER THE PHONE, GO TO SURVEYMONKEY.COM/R/ MSCONNECTIONSURVEY TO COMPLETE THE SURVEY ONLINE, OR COMPLETE THE SURVEY ON THE REVERSE PAGE AND MAIL IT BACK TO US AT NATIONAL MS SOCIETY, 30 S. 17 TH STREET, SUITE 800, PHILADELPHIA, PA 19103. SURVEY CLOSES OCTOBER 31. WINNER WILL BE NOTIFIED THE FOLLOWING WEEK.

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EVERYONE WHO COMPLETES THIS SURVEY WILL HAVE THE OPTION TO ENTER INTO A DRAWING FOR A $100 GIFT CARD TO KOHL'S. COMPLETE AND MAIL IT BACK TO NATIONAL MS SOCIETY, 30 S. 17TH STREET, SUITE 800, PHILADELPHIA, PA 19103. 1. RATE YOUR OVERALL SATISFACTION WITH MSCONNECTION NEWSLETTER. VERY SATISFIED SOMEWHAT SATISFIED UNDECIDED NOT TOO SATISFIED NOT SATISFIED AT ALL 2. HOW LONG HAVE YOU RECEIVED MSCONNECTION? <1 YEAR 1-2 YEARS 3-5 YEARS 5-10 YEARS >10 YEARS 3. DO YOU USUALLY SKIM THE NEWSLETTER FOR ARTICLES OF RELEVANCE TO YOU OR DO YOU READ THE ENTIRE ISSUE? SKIM FOR ARTICLES OF RELEVANCE READ ENTIRE ISSUE DON'T KNOW 4. HOW WOULD YOU RATE THE TIMELINESS OF ARTICLES PRESENTED IN THE MSCONNECTION? EXCELLENT GOOD FAIR POOR UNDECIDED 5. I FIND THESE MSCONNECTION FEATURES HELPFUL: GADGET CORNER CALENDAR OF EVENTS ASK THE EMPLOYMENT EXPERT NEWS BRIEFS

6. I AM MOST INTERESTED IN READING ABOUT THE FOLLOWING (MARK ALL THAT APPLY): PEOPLE MEETING WITH LOCAL AND STATE GOVERNMENT OFFICIALS TO ADVOCATE FOR THE NEEDS OF PEOPLE WITH MS PROGRAMS THAT HELP PEOPLE WITH MS CONNECT WITH OTHERS (SOCIAL, SUPPORT GROUPS, ETC.) RESEARCH INTO NEW TREATMENTS AND A CURE FOR MS INFORMATION ON TREATMENT OPTIONS LOCAL PEOPLE WHO HAVE OVERCOME THE CHALLENGES OF MS LOCAL PEOPLE WHO RAISE FUNDS OR ARE MAKING A DIFFERENCE IN THE FIGHT AGAINST MS UPCOMING FUNDRAISING EVENTS (WALK MS, BIKE MS) CELEBRITIES THAT HAVE MS OR ARE AFFECTED BY MS INFORMATION FOR FAMILY MEMBERS AND CARE PROVIDERS OF SOMEONE WITH MS NEWS ABOUT THE BOARD OF TRUSTEES AND CHAPTER STAFF PROGRAMS THAT HELP PEOPLE WITH MS DEAL WITH THE PSYCHOLOGICAL/COGNITIVE SYMPTOMS OF MS PROGRAMS THAT HELP PEOPLE WITH MS DEAL WITH THE PHYSICAL SYMPTOMS OF MS (VISION LOSS, SPASTICITY, ETC). INFORMATION ABOUT HEALTH INSURANCE CHANGES INFORMATION ABOUT DISABILITY ISSUES

7. MSCONNECTION IS EASY TO READ YES NO 8. MSCONNECTION IS WELL DESIGNED YES NO 9. MSCONNECTION IS THE APPROPRIATE PAGE LENGTH YES NO, IT SHOULD BE LONGER NO, IT SHOULD BE SHORTER 10. I AM A: PERSON WITH MS FRIEND/ FAMILY MEMBER OF SOMEONE WITH MS MS CAREGIVER HEALTHCARE PROFESSIONAL 11. COMMENTS/SUGGESTIONS:

CONTINUED FROM COVER The changes the ADA brought on were monumental. The law prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, state and local government services, public accommodations, commercial facilities and transportation. Carol Christ lives right outside of Philadelphia and has witnessed many of those changes. She was diagnosed with MS 20 years ago and now uses a wheelchair. “In the 25 years since the ADA was enacted, there have been a lot of improvements,” says Carol. “But there are many more things that need to be done.” It appears that the progress the ADA spurred in 1990 has stalled over the years. There are still doctors’ offices without automatic doors, polling places that aren’t accessible and entire towns without curb cuts. Accessible parking remains an obstacle for many people with disabilities. “The Department of Justice enforces the ADA, so you can always file a complaint,” says

WE’VE MADE A LOT OF PROGRESS, BUT WE NEED YOUR VOICE TO CONTINUE THE CONVERSATION. BECOME AN ADVOCATE TODAY. Mara Brough, an advocacy leader at the Society. Bill Payne, who lives near Rehoboth Beach in Delaware, has some experience with the Department of Justice. Sometimes, he feels like his efforts go unheeded. “It’s a continual battle to try to get people to understand,” says Bill, whose wife lives with MS and uses a walker. “They just hope I go away, I guess.” But Bill doesn’t plan on going away any time soon, and his persistence has paid off. He’s filed multiple lawsuits around accessibility issues,

and has been a driving force behind recent legislation in Delaware. This legislation aims to enhance accessible parking standards to better reflect the needs of persons with disabilities who live in Delaware. The legislation was introduced in June 2015 and will be revisited when the General Assembly reconvenes in January. “The legislation is a starting point for a conversation that is critically important,” says Debra Veenema, the Director of Programs and Delaware Advocacy at the Greater Delaware Valley Chapter. “It

10 will ensure that a person with a disability can have confidence in their ability to navigate their community and enjoy all the same pursuits that many of us take for granted.” Vickie George knows a thing or two about conversations. She’s been starting them since she was diagnosed with progressive MS in 1995. “Most of the changes that have started or occurred have been the result of having a conversation with somebody,” says Vickie, who is a member of the National MS Society’s Government Relations Committee. Before Vickie was diagnosed with MS, she was an exceptional athlete. Even though she is now quadriplegic, she continues to stay active. That’s why the lack of accessibility in state parks has been such an issue for her. Recently, she was invited to present to the entire Delaware State Park staff about accessibility. She showed them a video of what it was like to go through the park in a power chair. “It opened up their eyes,”

says Vickie. “As a result, they started to think about incorporating those changes into their overall physical plan for the state park.” Like Vickie, Carol Christ found out that just starting a conversation can work wonders. One of the first times Carol got involved with advocacy, it was to improve her local library. They had a ramp to enter the building, which complied with the ADA, but “the ramp wasn’t close to the handicap parking spots,” says Carol. After expressing her concerns to the library, they built a ramp directly from the parking spots to the entrance. It was a big win for Carol and set her off on the path of advocacy. During her many years of advocating for accessibility, Carol has learned that it might be in a business’s best interest to be more accommodating. She explains, “Better compliance can actually increase business for retailers, restaurants and hospitality. That’s a good thing for communities.” The U.S. Census Bureau

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confirms what Carol says. In the U.S., 50 million people are living with a disability. They have an aggregate annual income of more than $1 trillion and $220 billion in discretionary spending power.

have an expiration date on it, so people were keeping them…and using them.”

“BETTER COMPLIANCE CAN ACTUALLY INCREASE BUSINESS FOR RETAILERS, RESTAURANTS AND HOSPITALITY. THAT’S A GOOD THING FOR COMMUNITIES.” With such a large group of people, there will inevitably be some who try and take advantage of the system. Nancy Hartwick, a New Jersey resident, found this out after her father passed away. Before he passed away, her father had a handicap parking placard for his car. “You’re supposed to turn them in after your loved one passes away,” says Nancy, who was diagnosed with MS in 2000. “However, [the placard] didn’t

That didn’t sit right with her. Due to her MS, Nancy uses a wheelchair. She often has a difficult time finding handicap parking and was convinced that part of the problem was that people were using handicapped placards who weren’t supposed to be. Since she was involved with her town’s political club, she had the opportunity to talk about the issue to a state assemblyman during a meeting. “Right on the spot, he texted his chief of staff and said ‘look into how the law is’,” recalls Nancy. She kept the dialogue open, and eventually the assemblyman helped introduce legislation that would require handicap parking placards to have an expiration date, and for the date to be prominently printed and displayed on them. The legislation was signed into law by New Jersey Governor Chris Christie in January 2013. While it might seem unusual

for one person to initiate a law like this, Mara Brough explains that the legislator was just doing his job. “Legislators are our employees,” says Mara. “They are there to hear from us, and we need to make them aware that there are still issues.” Still, the question remains: if the ADA was signed into law in 1990, why has making businesses and public spaces accessible been such a challenge? It’s a simple question, but there’s no easy answer. There is the cost – it can be expensive to make a building and the grounds fully accessible. There’s also the awareness – many people don’t ever need to think about these issues and may not even realize there is a problem. And, finally, there’s the fact that while it may be apparent that change is needed, it is often difficult know where to start. It’s clear that in order to enact change, people need to speak up. That’s what Carol, Vickie, Bill and Nancy have all done. But while people can accomplish a lot on their

11 own, together, their voices are more powerful. The signing of the ADA in 1990 was the result of the efforts of those who began a revolution for their civil rights long before the legislation was passed. Mara and Debra urge everyone to contact the National MS Society and join our activist network. By working together and harnessing our collective power, we can make the world a more inclusive place.

IT’S CLEAR THAT IN ORDER TO ENACT CHANGE, PEOPLE NEED TO SPEAK UP. We are looking for MS Activists and District Activist Leaders to lead MS advocacy initiatives in the communities we serve. Go to www.nationalMSsociety. org/becomeanactivist or contact takeaction@nmss. org to sign up today. n

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NBC 10 ANCHOR JOINS MS LEADERS CIRCLE Chris Cato, an anchor for NBC 10, has joined the MS Leaders Circle. He’s fairly new to Philadelphia – he’s lived here for three years – but he’s not new to MS. Chris’s uncle, Jim Walker, was diagnosed with MS when he was in his 20s. “He is so special to me,” Chris says. “I talk about him in the present tense because he still has a great influence on my life.”

PLEASE JOIN US AT A LOCATION NEAR YOU AS WE CELEBRATE A YEAR OF ACCOMPLISHMENTS. VOLUNTEER, SERVICE AND FUNDRAISING AWARDS WILL BE PRESENTED TO THE 2015 HONOREES. ENJOY GREAT FOOD AND A CHANCE TO CONNECT WITH THE MS COMMUNITY WHILE LEARNING ABOUT THE LATEST DEVELOPMENTS IN THE WORLD OF MS RESEARCH. REGISTER BY VISITING CALENDARMS.ORG.

NOVEMBER 14

NOVEMBER 18

NOVEMBER 19

DESALES UNIVERSITY 2755 STATION AVENUE, CENTER VALLEY, PA

EMBASSY SUITES 654 S COLLEGE AVENUE, NEWARK, DE

HILTON PHILADELPHIA CITY AVENUE 4200 CITY AVE, PHILADELPHIA, PA

KEYNOTE ADDRESS BY TWO-TIME STANLEY CUP CHAMPION, BILL CLEMENT

KEYNOTE ADDRESS BY ZOE KOPLOWITZ, THE WORLD’S SLOWEST MARATHON RUNNER

KEYNOTE ADDRESS BY DR. MARY HUGHES, LEADING NEUROLOGIST, AND HER SISTER DR. DORA HUGHES, FORMER HEALTH POLICY ADVISOR TO PRESIDENT OBAMA AND WOMAN LIVING WITH MS

Chris explains how his uncle was outgoing, relentlessly positive and that his love for life was so strong. Chris says, “[In] my clearest memories of him, he’s walking with a cane and whistling. It was such a contrast.” Eventually, MS led to complications that took Jim’s life. “He really set a great example for me and those around him, and how you should go about facing life’s challenges,” Chris says. Because of the impact Chris’s uncle had on him, he jumped on the opportunity to accept his nomination for the MS Leaders Circle. Leaders Circle is an MS Society program that helps business professionals in the Greater Delaware Valley make a difference in the community by undertaking a fundraising campaign to benefit local people living with MS.

CHRIS CATO, NBC 10 NEWS ANCHOR AND MS LEADERS CIRCLE HONOREE “My fundraising isn’t off to the greatest start ever,” Chris admits. “But I know if I’m just half as determined as Uncle Jim was, it will be a big success.” Chris plans to reach out to the viewers of NBC 10 through social media and is going to mention his efforts on air in the near future. To see Chris’s campaign and learn more about MS Leaders Circle, visit MSleaderscircle.org. You can catch Chris anchoring the 4-6 AM news, weekdays on NBC 10. n

BENEFITS OF PHYSICAL ACTIVITY It was once recommended that people with multiple sclerosis (MS) should not engage in physical activity because it could exacerbate the disease process. This recommendation was based on the fact that people with MS often experience a temporary worsening of symptoms, such as fatigue, after a single bout of physical activity. However, increases in symptoms usually subside after rest, and there is no evidence to suggest that it is unsafe for people with MS to engage in physical activity. In fact, the cumulative evidence now indicates that physical activity has beneficial effects on mobility, fatigue, and quality of life among adults with mild to moderate MS symptoms. However, trying to stay physically active while coping with MS symptoms can be difficult. Mobility limitations, heat sensitivity, chronic fatigue and pain, as well as lack of motivation can all present challenges when trying to engage in a physical activity program. In spite of these challenges, you can overcome your symptoms to engage in physical activity. You can learn selfmanagement strategies to reduce the negative impact of symptoms and learn strategies to stay motivated to engage in physical activity. For example, fatigue management strategies can

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help you conserve energy, which might make it easier to engage in physical activity. You can learn strategies that can improve balance and help prevent falls. Whatever your MS symptoms are, there are strategies that can be used to help you be more active. Exercises can be changed to meet your needs. For additional guidance, ask your physician for a referral to a physical or occupational therapist. It is always a good idea to talk to your physician when first starting to engage in a physical activity program. Many people with MS think they donâ&#x20AC;&#x2122;t have enough energy to be more active. Nonetheless, being inactive may add to your MS fatigue. Regular physical activity can make you healthier and stronger. This might give you more energy for daily activities. Physical activity may result in short-term (such as 2 to 3 weeks) increases in fatigue. However, in the long-term (such as 6 to 8 weeks), physical activity may improve your fatigue levels. Walking problems can make it harder to be active. However, there are safe and fun options for you. You can ride a stationary bike or take a swimming or yoga class. You may decide that you like to walk. Just remember to use your mobility aide (brace, cane, walker) consistently and as instructed. Even if you do use a mobility aide, it is never too late to become active to receive health benefits. It is a common belief that people who use a mobility aide should not engage in physical activity. Actually, people who use a mobility aide can improve or preserve their walking ability by routinely engaging in physical activity.

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15 the time you spend watching television. Many forms of physical activity can be done while watching TV. You can stretch, ride a stationary bike, or use elastic bands in your living room.

ROBERT, DIAGNOSED IN 1990, STAYS ACTIVE BY SWIMMING EVERY DAY IN ORDER TO STAY FIT, STRONG, AND HEALTHY. Making physical activity a priority does mean making time to do it. With so much to do at work and home, it can seem nearly impossible. However, even 10 minutes of activity done a few times a day can provide important health benefits and help you live longer. Maybe finding a little time to be active would not be that difficult. Consider

If you are interested in learning more strategies about engaging in physical activity and managing your MS symptoms call the research office of Case Western Reserve University at 216-368-0643 or 216-368-1200. They are currently conducting a study, funded by the National MS Society, evaluating an over the phone physical activity and fatigue management program for people with MS. All education sessions are being conducted over the telephone. Thus, there will be no requirements for face-to-face meeting. We have almost completed the study so if you are interested call soon to help ensure your participation in this important study. n

The 2016 Scholarship Program launched on October 1, 2015. Applications will be accepted through January 15, 2016. If you are, or have, a collegebound student who is interested in pursuing a scholarship from the National MS Society, please visit www.nationalMSsociety.org/Scholarship for details and eligibility criteria or contact your local chapter directly.

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MUCKFEST MS RAISES $600,000 FOR MS ®

MIK EY C. & FRIENDS ROCK 4 MS Michael Conelias organized a benefit night in Bethlehem, PA. Guests enjoyed music from three popular local bands: The Aardvarks, The Boogie Stew and The Trophy Husbands. The event raised more than $21,000.

Muckfest® MS took place over two sun soaked and muck filled days in Newtown Square, PA. Over 7,000 people came out, running, swinging and sliding their way to raising over $600,000 for MS research, programs and services. This fun mud run proved again why so many people come back year after year to raise money in a unique and challenging way. n DODGE FOR THE CUR E Brandon Chudnoff, a student and football player at Temple University, organized a dodgeball tournament at Temple. The event raised $660.

COSMETOLOGY CLINIC Students at Eastern Technology Center in Willow Grove, PA organized a Cosmetology Clinic for MS. Clients made donations for beauty services, raising $506 in one day.

MCCRAY’S 5K FOR MS Gillian Klein organized a 5K run/walk at Cooper River Park in NJ in honor of her best friend who has MS. More than 100 people came out to run or walk. The event raised $2,900.

ATION NIGHT Z AV INO DON and pizzeria, ar b e in w a o, in av Z pril eir total sales on A th f o % 10 ed at don eir Philadelphia th f o th o b m o fr 26th t raised $1,335. locations. The even

CRUISE FOR A C UR

Brandon Radich or ganized a cruise/car meet at Wildwood, NJ to honor his mom, who lives with MS. Mor e than 50 cars joined in the event, and they raised $808.

GADGET CORNER

A HANDY BAR FOR YOUR CAR The Handy Bar makes it easy to get in-and-out of the car. Simply slide the handle into the striker/doorlatch for extra support while sitting or standing. It fits any door striker – so you can have support anywhere in the car for stress-free traveling. When you’re done, simply place the handle in your car and you’re ready to go. You can find Handy Bar online at Amazon and other online retailers.

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LENDING A HELPING HAND TO A LONG TIME FUNDRAISER Craig Dundon visited his wife Leslie in the hospital nearly every day while she recovered from an MS exacerbation. But as he waited for more than 100 days for her to return home, they realized their house would need a makeover. The house they built nearly twenty years ago was not handicap accessible, and Leslie would now be using a motorized wheelchair. “Craig emailed me and explained that Leslie was in rehab and she was getting released soon,” recalled Mollie Burns, an MS Navigator with the National MS Society. “They were extremely worried about her getting in and out of the bathroom.” When a client like Craig calls and says they need a modification done to their home, they are sent a HomeABLE application. The HomeABLE program was developed in 2007. At that time, Mollie explained, “We realized there was a need for people who couldn’t get out of their homes. And it just evolved from there.” Leslie and Craig Dundon have been married for 22 years. They finish each other’s sentences and are quick to poke fun at each other. Behind it all, the love they share is obvious.

CRAIG AND LESLIE DUNDON Leslie’s symptoms first started in 2007. She and Craig were out to dinner, sitting across from each other, when Leslie started winking. After a while, Craig asked if she was trying to tell him something. Only Leslie hadn’t realized she’d been winking. They went to see her doctor the next day. When a neurologist confirmed Leslie’s diagnosis, Craig said, “We went back to work and were just kind of numb.” He added, “For the first three years, there were very little in the way of symptoms.” One of the first things they did after Leslie was diagnosed was buy two bikes. Very early on, Craig recalled how the guys at their local bike shop said, “You’re going to get hooked, we can tell.” He wasn’t so sure, but he enjoyed biking enough that he signed up for the 2007 Bike MS: City to Shore Ride. That first year, Craig had his sights set on becoming a VIP fundraiser. Once he achieved that, he redoubled his efforts in 2008 and made it into the Top 250 — that’s where he’s stayed

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ever since. Now in his ninth year, Craig has raised over $25,000 for people living with MS.

that the MS Society was going to take care of the bathroom.

“It’s an incredible event, and everyone I know that’s ridden says so,” Craig said. He paused, and added, “It’s about Les. It’s not about me.”

“I was absolutely speechless. I just never saw it coming,” Craig said. “It just wouldn’t have been affordable for us. We wouldn’t have been able to pull it off.”

Leslie continued to work after her diagnosis for six years. “I was using a cane at work, and I fell, twice. One time I went down on the corner of a cabinet,” Leslie said, laughing nervously. “It wasn’t very pleasant – or graceful either.” Eventually, Leslie’s neurologist advised her to stop working. Two years later in April 2015, Leslie was in rehab recovering, and Craig had sent in his HomeABLE application. He was waiting to hear back from Mollie Burns of the MS Society. Craig had just pulled into his driveway and was sitting in his car when he got the call. He got choked up remembering when Mollie told him

Mollie was equally ecstatic about being able to fund their bathroom modification. “Being a part of this process, and seeing how we were able to…sustain them as a family and as a couple,” Mollie said. “We were able to sustain their home. And that’s what HomeABLE does.” Three days before Leslie returned home, the Dundons’ bathroom modification was complete, and Leslie was able to come home knowing she could move safely in her house. For more information on HomeABLE, visit nationalmssociety.org/homeable or call 1-800-FIGHT-MS. n

TECHNOLOGY AND ACCESSIBILITY AXS Map (access map) is a crowd-sourced tool for sharing reviews on the wheelchair accessibility of businesses and places. It’s available online or via mobile web, as well as Android and iPhone applications. To learn more and start mapping, visit www.axsmap.com.

A VIEW FROM THE TOP

MS CONNECTION: 2015 ISSUE 3

Shirley travelled for two hours to United States Hot Air Balloon Team, who say they are the only hot air balloon company on the East Coast to offer flights that are wheelchair accessible.

“I TRY NOT TO LET MY DISABILITY HOLD ME BACK FROM ANYTHING.”

Shirley received a grant from the Arthur Stapler Memorial Adventure Fund to pay for the ride. The fund was established in 2007 to honor the memory of Arthur Stapler, a skydiver who lived with MS. This program also encourages those with MS to overcome physical limitations to experience life through Arthur’s example.

“I don’t know of any others,” said Stan Hess, the owner of United States Hot Air Balloon Team. “It’s very gratifying for us.”

SHIRLEY SPENCER ENJOYING THE VIEWS A red and blue hot air balloon ascended over Lancaster County carrying Shirley Spencer and her 87 year old parents. “I try not to let my disability hold me back from anything,” said Shirley, who was diagnosed with MS in 1997. Shirley and her parents cruised along at 1,000 feet over the green fields and rolling hills of rural Pennsylvania. They landed in a clearing on a farmer’s field, and afterwards, celebrated with non-alcoholic mimosas. While others who take hot air balloon rides have similar experiences, this trip was special for Shirley. Because of her MS, Shirley uses a walker. Traditional hot air balloons are not accessible; to enter the basket, people must climb over the side to get in. That’s why

SHIRLEY AND HER PARENTS “It was a once in a lifetime thing to do,” said Shirley. “But I would have never been able to pay for it myself.”

To find out more or apply for an Arthur Stapler Adventure Fund grant, visit nationalmssociety.org/ArthurStapler. The United States Hot Air Balloon Team takes off from Lancaster, Chester, and Bucks Counties in PA. For more information on how you can take a trip like Shirley’s, visit ushotairballoon.com or call 800-763-5987. n

Enrolling Now

Stan said since they got the accessible gondola (the basket below the balloon) nine months ago, the demand has been huge. They even have plans to order another one. Shirley explained how her experience proves that people can be adventurous no matter how old or disabled they are.

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

Transcorneal Electrical Stimulation Research Study

Cognitive changes are common in people with MS — approximately half of all people with MS will develop problems with cognition. If you are experiencing these symptoms, cognitive rehabilitation may be able to help. Main Line Rehabilitation Associates is providing 10-15 individuals with MS up to 26 sessions of Cognitive Rehabilitation Therapy over 3-5 months, free of charge, starting in October. Visit www.mainline-rehab.com for more information

■■ Have you been diagnosed with multiple sclerosis? ■■ Do you have vision changes? ■■ Are you 18 or older? You may be eligible for a clinical trial at Wills Eye Hospital. Call Today: 215-928-3937 Please mention: TES Study

MS CONNECTION: 2015 ISSUE 3

QUESTIONS FOR A CONGRESSMAN: TH ON THE 25 ANNIVERSARY OF THE ADA Congressman Ryan Costello of PA’s 6th district answers some questions on the significance of the ADA, and how he is planning to further his commitment to it.

WHY IS THE ADA IMPORTANT? The signing of the Americans with Disabilities Act, on July 26, 1990, was a historic day. This groundbreaking legislation has provided hope, broken down barriers, banned discrimination, and assured millions of Americans that no matter your limitations you can live a meaningful and fulfilling life. Prior to this legislation, far too many faced daily judgment based

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

CONGRESSMAN RYAN COSTELLO AND HIS SON SHARE HOW THEY’RE CONNECTED. society that welcomes and encourages, not one that discriminates or lacks accommodation. During my first seven months in Congress, I have had the opportunity to meet with several groups who have benefitted from the ADA and their stories are inspiring.

CONGRESSMAN RYAN COSTELLO WITH HIS WIFE AND SON SUPPORT WALK MS: EAST GOSHEN IN MAY 2015. solely on physical or mental limitations. Public transportation, workspaces, and homes made few accommodations for individuals with disabilities.

WHAT IMPACT HAVE YOU SEEN THE ADA HAVE ON YOUR CONSTITUENTS? To see the impact of this legislation we don’t have to look far – just look at our younger Americans – those born after 1990. All they know is life with the ADA. Since the enactment of the ADA, we have created a

Recently, disability advocates from my Congressional District in Pennsylvania were able to travel to Washington, DC to talk with me about their experiences living with disabilities and their policy priorities. This alone is a wonderful testament to the fact that the ADA has made Congress more accessible to individuals with disabilities.

23 THE ADA HAS MADE A SIGNIFICANT IMPACT, YET THERE IS STILL WORK TO DO. DO YOU HAVE ANY PLANS TO FURTHER YOUR COMMITMENT TO THE ADA BY MAKING OUR COMMUNITIES MORE ACCESSIBLE? Congress needs to continue to set forth and advance good policy – like the ABLE Act from last Congress – which will encourage individuals and families to save tax-free dollars to help finance the costs associated with disabilities. We must continue our efforts, in a bipartisan manner, to advance policy that keeps us a step ahead – that meets the needs of disabled Americans today and tomorrow. There’s no substitute to the concerns, perspective and suggestions of those with a disability, and their loved ones. So I really encourage all of my affected constituents to provide me ongoing input on these issues. It’s the surest way to enabling me to be as effective as I can possibly be. n

Each of us has a story that can drive change. MS Activists and the National MS Society are currently working on creating a home modification tax credit in Delaware, Pennsylvania and New Jersey. If you have experienced difficulties paying for home modifications to make your home more accessible and would like to share your story, please email takeaction@nmss.org.

MS CONNECTION: 2015 ISSUE 3

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

READER SUBMITTED ESSAY

MISTRESS OF MY BR AIN BY SUZANNE FABRICANT

Soon after my MS diagnosis, I wondered what was going on inside me. During a visit with the neurologist, he pointed to the brain lesions on the MRI. I became curious about their location. I asked the doctor if my being left-handed had anything to do with where the lesions appeared. The location of the MS lesions was always random, without reason or pattern. Lesions eliminate or reduce the ability of my brain to use cognitive processes in the way that I want. I can only focus on one thing at a time. When I am interrupted and my concentration is broken I become irritable and snap. Demyelination is the aberration that makes it hard to use my brain in the most efficient manner. It removes the protective coating of the nerves. Lesions are potholes on the roads in the brain. Lesions cause thoughts to take a circuitous route through my brain. Learning the effects of the lesions gave rise to my fantasy. In my fantasy, there is a userfriendly, GPS system set up to direct my brain to run with perfect efficiency and to avoid the unwanted detours caused by MS. With this system, I would have the power to reprogram the journey that my thoughts take. It would be great if I could control my brain with point and click technology. I would have a way to banish the thoughts I don’t want and activate thoughts that would be useful. Worrisome thoughts would bypass the part of brain that interferes with multitasking and instead head into the abyss. Anxious thoughts about earning money within the allowable limit, or becoming a crazy coupon clipper to reduce my monthly living expenses would no longer race through my mind. No more veering off the path. Unfavorable detours would be eliminated and my brain’s journey would always follow the proper direction. There are problems dividing my attention for successful multi-tasking. Switching between tasks and thoughts has become a major roadblock to problem solving. In my fantasy world, my GPS System would allow me to have the power and establish the rules. My choices would dominate my brain activity, taking control back from MS.

KEVIN MOFFITT, EXECUTIVE VICE PRESIDENT OF THE GREATER DELAWARE VALLEY CHAPTER, PRESENTS THE PARTNERS IN MS CARE - NEUROLOGY PLAQUE TO DR. JOAN SWEENEY OF THE ST. LUKE’S MULTIPLE SCLEROSIS CENTER IN ALLENTOWN, PA. FOUNDED IN 2007, ST. LUKE’S IS ONE OF THE LEADING PROVIDERS OF MS CARE IN OUR AREA, SERVING NEARLY 700 PEOPLE LIVING WITH MS. FROM LEFT TO RIGHT: KRIS LEVINE, RIA LOUKAS, MELISSA BRUNO, LAURA HETRICK, KEVIN MOFFITT, DON NORDER, DR. JOAN SWEENEY, BETH DELIN, MONICA JOHNSON, TRACY GROLLER, AND KATHRYN HEINZ.

Volunteers will complete household chores and small projects for people living with MS in Philadelphia, PA and New Castle County, DE on Saturday, October 24. Consider volunteering as an individual or recruiting your own group of volunteers from work, school, church or the neighborhood. Volunteers will work in teams and receive orientation and a celebratory meal at the end of the day. By the end of the project, it will be evident to everyone involved what a difference a day really can make! Download the volunteer application at nationalMSSociety.org/serviceday or call 215-271-1500 or 302-655-5610 for more information. Volunteer registration closes on October 9, so act soon!

MS CONNECTION: 2015 ISSUE 3

FACE OF MS: JEAN GRISWOLD JEAN GRISWOLD HAS MADE A MAJOR MARK ON MS AND ON THE QUALITY OF LIFE OF PEOPLE WITH DISABILITIES IN GENERAL. IN 1982, SHE FOUNDED GRISWOLD HOME CARE, THE WORLD’S OLDEST MULTI-NATIONAL NON-MEDICAL HOME CARE COMPANY. GRISWOLD HOME CARE HAS GROWN TO OVER 200 FRANCHISES AND HAS SERVED NEARLY 100,000 INDIVIDUALS. ALTHOUGH THE GRISWOLD FAMILY SOLD THE COMPANY IN 2009, JEAN REMAINS ACTIVE THROUGH SPEAKING ENGAGEMENTS AND BY PUBLISHING A BOOK TITLED, “FEARS OF THE ELDERLY.”

HOW DID YOU COME TO START YOUR HOME CARE BUSINESS? It was the natural thing for me to do. I lived in an area of Pennsylvania where there just weren’t any home care services. I wasn’t at all surprised by how quickly the company grew because there was so much demand for this type of service.

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

AFTER LIVING WITH MS FOR MORE THAN 45 YEARS, WHAT ADVICE WOULD YOU HAVE FOR SOMEONE WHO IS NEWLY DIAGNOSED WITH MS? Talk to other people living with MS so you can discuss what you are going through. You are not alone and you shouldn’t feel alone.

HOW HAS MS AFFECTED YOUR LIFE? It really hasn’t been a major factor in my life because I’ve worked very hard to minimize its impact on my life. I don’t think of myself as being handicapped or disabled. It just means I sometimes need support from either my husband Lincoln, who is my shadow, or my son, Kent. I’m making it sound easy, but it’s not.

YOU’VE HAD MANY SUCCESSES: YOU’VE BUILT A WORLD-LEADING COMPANY, WRITTEN A BOOK AND SPOKEN TO THOUSANDS OF PEOPLE. HOW DO YOU FEEL ABOUT ALL YOUR ACCOMPLISHMENTS? I don’t think about them. What makes me feel successful is hearing the applause when I speak to audiences – and I get so many requests I can’t fulfill all of them! n

JEAN GRISWOLD, FOUNDER OF GRISWOLD HOME CARE, AND AUTHOR OF “FEARS OF THE ELDERLY,” PICTURED WITH HUSBAND, LINCOLN.

WHY DID YOU WRITE YOUR BOOK, “FEARS OF THE ELDERLY”? I am constantly being bombarded by people wanting advice about aging. They want to know what comes next. Unfortunately, the needs of the elderly aren’t discussed much and many older people want to hide their fears or simply don’t feel comfortable discussing them.

Our chapter is recruiting volunteers for our Friendly Visitor Program. Volunteers will have the opportunity to meet on a regular basis with residents of Long Term Care facilities who have multiple sclerosis. Visits will be in-person or could be over the phone if that is the best option. The chapter requires volunteers to attend a one-hour emotional support training by phone and spend at least one hour per month with their match, providing company and emotional support. All volunteers are welcome, with or without a personal connection to MS. FOR MORE INFORMATION, PLEASE CONTACT EVAN MARCUS AT 215-271-1500.

Free Matter for the Blind or Handicapped

30 South 17th Street, Suite 800 Philadelphia, PA 19103 ADDRESS SERVICE REQUESTED

1-800-FIGHT-MS n nationalMSsociety.org

As the end of year approaches, please consider making a gift to the National MS Society. Donations from people like you help support and grow our local programs, services, and ongoing research initiatives. Your gift, no matter large or small, can make a big difference in the lives of the thousands of local families living with MS. To make a donation, visit nationalMSsociety.org/givegreaterdel or call 215-271-1500.