MSConnection - Greater Delaware Valley - 2016, Issue 3 by Kevin Moffitt

2016 ISSUE 3 DELAWARE, SOUTHEASTERN PENNSYLVANIA & SOUTH JERSEY

MSCONNECTION NEWSLETTER A DIFFERENT KIND OF FAMILY On a June evening, a group of fifteen people gather around a makeshift conference table. The atmosphere is like a family dinner, with members swapping stories and catching up on each other’s lives. After a few minutes of lively conversation, Amy Taklif—the group’s leader—takes her seat at the head of the table. Everyone gradually quiets down and looks in Amy’s direction.

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INSIDE 12 16 THIS ISSUE PILATES AND MS

DELAWARE ACTIVISTS HELP PASS LAW

BRIGHT STUDENTS AWARDED SCHOLARSHIPS

HOW TO START YOUR OWN FUNDRAISER

FACE OF MS: DENISE FRANKLIN

MS CONNECTION: 2016 ISSUE 3

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 donâ&#x20AC;&#x2122;t have a valid email address on file for you, you are not able to receive this valuable information. Please call your chapter at 1-800-344-4867 or email pae@nmss.org today to be added to our electronic distribution lists.

PHILADELPHIA OFFICE

NEWARK OFFICE

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

National Multiple Sclerosis Society 200 Continental Drive, Suite 115 Newark, DE 19713 302-655-5610

ÂŠ2016 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

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. 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.

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PRESIDENT’S MESSAGE

ADVOCATING FOR YOURSELF Advocacy can take many forms. For Lisa and Dave Marchione, being an advocate means taking every opportunity to inform people of the issues that KEVIN MOFFITT, PRESIDENT Dave faces as a wheelchair user. They believe he should be able to do anything an able-bodied person can do. And to do that, you need to be an advocate for yourself. A few years ago, Lisa, Dave, and their children wanted to go to a community fair. When they arrived, they were directed to parking far away from the entrance and were told a bus would shuttle them to the fair. After they parked, the bus pulled up, and they realized it was not wheelchair accessible. They had to go home, and the family was understandably upset. To anyone who uses a wheelchair, this is most likely a familiar story. So Lisa took that negative experience and used it for good. She wrote the operators of the fair as well as her local news station. She received an apology and assurances that wheelchair accessible transportation would

be provided from then on. That’s how Lisa became an advocate. Advocating for yourself can also mean taking steps to live your best life. Nikki Kahn had been experiencing worsening symptoms for a while, including drop foot that made it nearly impossible to do any traditional exercises. So she took it upon herself to find an exercise that she could do and maintain with her symptoms. That’s when she started taking Pilates classes with the Reformer machine, which have significantly improved her symptoms. When we encourage people to advocate for themselves, it’s about more than any one person. In each of these examples, people enacted change based on their personal experience, which benefited the greater good. Now, people who attend that fair will have wheelchair accessible transportation, and now, because of Nikki’s determination, more people will know about a viable option for people who have difficulty exercising. Everyone can take their personal experiences and do something to help not only themselves, but everyone else. The more people take it upon themselves to do something, the stronger we will all become. Please feel free to email me with any feedback or questions at Kevin.Moffitt@nmss.org or call 267-765-5103. Sincerely,

Kevin Moffitt, President

MS CONNECTION: 2016 ISSUE 3

UPCOMING PROGRAMS Call 1-800-344-4867 or visit calendarMS. org for more information or to register for any of these upcoming programs for people living with MS.

HEALTH INSURANCE: WHAT EVERYONE NEEDS TO KNOW SEPTEMBER 13 • 8:00 - 9:15 PM TELELEARNING CALL

Most people – with or without MS – get health insurance from different sources as they grow from childhood to adulthood, through their working lives and beyond. Understanding how eligibility for health insurance from these different sources can impact you and your family, how and when to enroll and other key factors are especially important for people with MS to assure their continued access to care and financial security. This webinar will provide a basic overview of the different ways people with MS and their families can get and keep health insurance, how to plan for transitions (such as moving from employer-based coverage to Medicare), and what to expect as an enrollee in a private or public health insurance plan. Visit w w w.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot.

MULTIPLE SCLEROSIS RESEARCH UPDATE DIMMIG EDUCATION CENTER • ALLENTOWN, PA OCTOBER 6 • 5:30 - 8:00 PM

Join us for an informative presentation from a top neurologist on the latest news in MS research. The program will also include a 30 minute question-and-answer session. Light refreshments will be served. To register, call 1-800-344-4867 and choose option 1 or visit www.nationalMSsociety.org/ MSResearchUpdate.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

TOGETHER IN MS: SUPPORTING FAMILY AND FRIENDS OF PEOPLE WITH MS OCTOBER 11 â&#x20AC;˘ 8:00 - 9:15 PM TELELEARNING CALL

Multiple sclerosis not only affects the person with MS, but it also impacts all those who care about and provide support for the person living with the disease. Support partners may be spouses/partners, family members, or friends of someone with MS. Anyone in this important role experiences a variety of emotions and concerns when adapting to the challenges MS brings to their lives. Please join psychologist Rosalind Kalb, PhD and occupational therapist Juliann Hanson-Zlatev, OTR as they respond to your questions and concerns while sharing real life scenarios pertaining to the challenges and struggles of support partners and their loved ones. This webinar will provide a unique opportunity for support partners and the person living with MS to adopt skills, strategies, and tools needed to live together fully with this chronic, unpredictable disease. Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot. n

GO TO CALENDARMS.ORG TO FIND OUT MORE AND REGISTER IN MID-SEPTEMBER.

06 RESEARCH

NEWS BRIEFS STUDIES UNCOVER POSSIBLE NEW FACTORS THAT ALTER A PERSON’S RISK FOR DEVELOPING MS Harvard researchers – including National MS Society-funded Dr. Cassandra Munger - reported that children whose mothers were deficient in vitamin D during pregnancy may have nearly twice the risk of developing MS. Additional research is needed to confirm and understand this finding. Research on risk factors is complicated, and cause and effect are difficult to establish. It’s important to note that not every mother with low levels of vitamin D will have a child who develops MS.

MS CONNECTION: 2016 ISSUE 3

MAJOR TRIAL OF A RE-PURPOSED THERAPY IN PROGRESSIVE MS RECEIVES FUNDING

ANTIHISTAMINE SHOWS EVIDENCE OF STIMULATING MYELIN REPAIR IN SMALL STUDY

Investigators at the Cleveland Clinic Foundation are launching a phase II clinical trial of ibudilast (MN-166, MediciNova, Inc.), an oral anti-inflammatory agent, in 250 people with progressive forms of MS. The study is principally funded by NeuroNEXT Network, a clinical trials initiative of the National Institutes of Health, with additional support by MediciNova, the company that will supply ibudilast. The National MS Society actively advocated for this uniquely collaborative trial, and is also providing funding support because it aligns with the Society’s strategic focus on progressive MS, and may answer important questions about the best ways to measure the benefits of therapies aimed at protecting the nervous system from MS.

In a small, phase II clinical trial, the oral antihistamine clemastine modestly improved the transmission of electrical signals in the optic nerve in participants with MS who had optic nerve damage. The improved transmission indicates that nerve-insulating myelin was repaired along the nerve pathways. Clemastine is an over-thecounter allergy medication. Doses in this trial exceeded the maximum recommended for over-the-counter use. Clemastine affects a range of targets in the body, and involves the risk for side effects, particularly at increased dosages. This team is planning an additional trial to further determine the safety and effectiveness of clemastine, as well as studies to identify compounds that may enhance myelin repair and cause fewer side effects.

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RESEARCHERS PROMOTE MYELIN REPAIR IN MOUSE MODELS Researchers at the University of California, Davis promoted the formation of new myelin – the nerveinsulating material damaged by multiple sclerosis – in mouse models. They also caused improvements in some cognitive functions. The team used a strategy that involved generating immature astrocytes (cells that support the structure of the brain) using “induced pluripotent stem cells,” which are produced by reprogramming adult skin cells. When transplanted into mice, the cells stimulated myelin repair, along with improvements in learning and memory. Studying this novel strategy further may yield a solution for restoring function in people with MS.

GERMAN STUDY SUGGESTS LEUKEMIA AND COLORECTAL CANCER RATES INCREASED WITH MITOXANTRONE USE FOR MS A study of 676 people with MS treated with the MS therapy mitoxantrone in Germany reveals that the rates of acute myeloid leukemia (a type of cancer) and colorectal cancer were significantly increased above what would be expected in the general population there. Rates of other cancers were not increased. The authors note that if the findings are confirmed, recommending colonoscopy after treatment may be advisable, since if found early enough, colorectal cancer is curable.

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

07 FDA APPROVES ZINBRYTA™ (DACLIZUMAB) FOR RELAPSING MS The FDA has approved Zinbryta™ (daclizumab, Biogen and AbbVie) as a disease-modifying therapy for adults with relapsing forms of MS. Zinbryta is an immunemodulating therapy taken by under-the-skin injection every 4 weeks. In a phase 3 trial, Zinbryta was shown after nearly 3 years to reduce annual relapse rates by 45% and to significantly reduce disease activity observed on MRI scans compared to Avonex® (interferon beta-1a, Biogen). Zinbryta was also shown to reduce the relapse rate by 54% compared to the placebo in a smaller, shorter phase 2 trial. Because of its safety profile, the prescribing information indicates that use of Zinbryta should generally be reserved for people who have had an inadequate response to two or more MS therapies.

08 GUT BACTERIA DIFFER IN PEOPLE WITH MS Harvard researchers found significant differences between the gut bacteria of people with MS and without MS, and also between treated and untreated people with MS. The differences included increases in bacteria associated with inflammation in people with MS, and suggestions that treatment may help “normalize” some of the MS-related changes seen in gut bacteria. This study adds to growing evidence of the possible influence of gut bacteria on immune activity. Further study is needed to determine whether alterations in the gut microbiome play a role in MS disease activity, or are a consequence of it.

STEM CELL CLINICS IN THE U.S. NEED BETTER OVERSIGHT Researchers have published a paper describing the proliferation of stem cell clinics in the United States and ethical issues and regulatory concerns

MS CONNECTION: 2016 ISSUE 3

that come with marketing unproven treatments for many conditions. Their study shows that many different types of unproven stem cell treatments are being offered, and highlights concerns for the safety of people who undergo these treatments. There is exciting progress being made through innovative research related to the potential of many types of stem cells for slowing MS disease activity and for repairing damage to the nervous system. At present, there are no approved stem cell therapies for MS. People need the best available information to understand this exciting area of research and make decisions related to this complex issue.

POSITIVE RESULTS FROM STUDY OF BONE MARROW-DERIVED STEM CELLS IN PEOPLE WITH AGGRESSIVE, RELAPSING MS Researchers in Canada have published results of a long-term trial of an individual’s own

(autologous) hematopoietic (blood cell-producing) stem cell transplantation. The study involved 24 people with aggressive relapsing-remitting MS whose disease was not controlled with available therapies. Three years after the procedure, 70% remained free of disease activity, with no relapses, no new MRIdetected inflammatory brain lesions, and no signs of progression. None of the surviving participants, who were followed for 4 to 13 years after the procedure, experienced clinical relapses or required MS disease-modifying therapies to control their disease, and 40% experienced reductions in disability. One of the participants died and another required intensive hospital care for liver complications. All participants developed fevers, which were frequently associated with infections, and other toxicities. Additional research is focusing on figuring out who might benefit from this procedure and how to reduce its risks. n

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CONTINUED FROM COVER Since 2014, Amy has been leading the MS Connections Group in Trevose, PA. The group supports people living with MS as well as their family and caregivers. As a social worker and case manager, Amy has previous experience running small groups. The group in Trevose initially had three leaders, though Amy is now the sole moderator. She leads with a sense of humor and a quiet confidence, kindly encouraging members to minimize side conversations and stay on topic. At this particular meeting, Amy asks if anyone in the group has news to share. Some are eager to talk about the latest MS research, while others have personal news to discuss. One woman candidly shares her fears about undergoing a new treatment. Members sit in rapt attention, asking thoughtful questions without prying. Others have successes to share. One woman is close to tears when talking about the benefits of starting a new MS medication. Her cognitive issues and speech have improved significantly, despite some initial side effects. Amy points out the woman’s progress, and the group applauds. “That’s wonderful,” says the man next to her. While the tone of this conversation is positive, members sometimes confront difficult situations and negative emotions. In these cases, Amy tries not to offer a “silver lining” right away or allow the conversation to devolve into a “pity party.” Instead, she listens carefully and allows group members to take the lead. “If someone’s in a really hard place, I try to just be there with them, and the group tries to just be there with them. And someone else will

AMY TAKLIF, MS CONNECTIONS GROUP LEADER eventually share something that happened to them that was similar,” she says. Amy has long been an advocate for people living with disabilities, even before she received a diagnosis of MS. She emphasizes that “disabled” is not a dirty word or something to be ashamed of.

“IF SOMEONE’S IN A REALLY HARD PLACE, I TRY TO JUST BE THERE WITH THEM, AND THE GROUP TRIES TO JUST BE THERE WITH THEM.” CONTINUED ON NEXT PAGE

MS CONNECTION: 2016 ISSUE 3

“Having to use a cane or a wheelchair isn’t giving up – on the contrary, it’s fighting back. It’s saying, ‘I’m not allowing [MS] to change my mobility; I’m not allowing this to change my life and to limit me,’” Amy explains. This sort of attitude has helped group members find a new lease on life. “I have had people in my group say [attending meetings] is the best thing they’ve done for themselves, regarding MS, in a long time,” Amy says.

“HAVING TO USE A CANE OR A WHEELCHAIR ISN’T GIVING UP – ON THE CONTRARY, IT’S FIGHTING BACK.” One man, who started attending meetings about a year ago, spent his life caring for family members. After receiving a diagnosis of progressive MS, he started taking better care of his physical and mental health. He joined Amy’s group and befriended several members, some of whom showed him how to use Facebook. He then participated in an online MS support group, where he met his future wife. The two now live together in South Carolina. Christine Cunningham, who was diagnosed with MS in 2013, has also benefitted from attending support group meetings. For Christine, the group offers a place to share experiences with people who can relate to what she’s going through. “It gives me the opportunity to discuss MSspecific things with people who understand

what I’m saying. For example, if I say to the group, ‘I’m wiped out by 3 p.m.,’ they get that… If I were to say it to my sister who does not have MS, she likens it to just needing a rest,” Christine explains.

“IT GIVES ME THE OPPORTUNITY TO DISCUSS MS-SPECIFIC THINGS WITH PEOPLE WHO UNDERSTAND WHAT I’M SAYING.” For Amy, the group is like having “a whole new family.” Members spend time together outside of the group and frequently go out for dinner after meetings. They also have an

NATIONALMSSOCIETY.ORG | 1-800-344-4867

ongoing Facebook conversation, which Amy says is crucial to maintaining the group’s close bond. Through Facebook, members often discuss MS treatments and get support if they’re having a bad day. Amy also emails group members before each meeting, suggesting a topic for discussion and letting them know about any guest speakers. “There’s never any substitute for a support group of any kind, not just for MS,” Amy says. She explains that the kind of support offered by peers can’t be matched by any other form of therapy, and no other population knows MS like those who live with the disease. For anyone hesitant to join an MS support group, Amy recommends contacting the leader in advance to learn more and talk about any concerns. She also encourages people to try out a group, even if they’re feeling nervous. “It’s only going to take an hour out of your life – see if you like it,” she says.

11 Christine Cunningham agrees. “Just do it– figure out a way to get there if you don’t drive, but just do it. You will be happy to have a sounding board and friends that understand you like no one else can,” she says.

“JUST DO IT— FIGURE OUT A WAY TO GET THERE IF YOU DON’T DRIVE, BUT JUST DO IT. YOU WILL BE HAPPY TO HAVE A SOUNDING BOARD AND FRIENDS THAT UNDERSTAND YOU LIKE NO ONE ELSE CAN.” Amy’s group meets on the second Tuesday of each month, from 6:00 p.m. to 7:30 p.m. at the LIFE St. Mary Center. There are more than 40 groups across the Greater Delaware Valley, which meet at various times and locations. For information, visit nationalMSsociety.org/PAEgroups. n

THERE ARE MORE THAN 40 SELF-HELP GROUPS FOR PEOPLE LIVING WITH MS IN THE GREATER DELAWARE VALLEY. THE GROUPS MEET MONTHLY AND ARE WONDERFUL SOURCES OF FRIENDSHIP, UNDERSTANDING, COMPASSION, AND INFORMATION. THE GROUPS ARE DIVERSE, WELCOMING, AND OPEN TO PEOPLE LIVING WITH MS AS WELL AS THEIR LOVED ONES. IF YOU ARE NOT CURRENTLY A MEMBER OF A GROUP, PLEASE CONSIDER JOINING ONE. TO FIND A GROUP NEAR YOU, VISIT WWW.NATIONALMSSOCIETY.ORG/PAEGROUPS OR CONTACT CYNTHIA TEHAN AT 267-765-5126 OR CYNTHIA.TEHAN@NMSS.ORG. IF THERE ISN’T A GROUP IN YOUR AREA, PLEASE LET US KNOW.

MS CONNECTION: 2016 ISSUE 3

PILATES AND MS None of the MS treatments were working, and Nikki Kahn was running out of options. “I noticed my MS getting worse,” said Nikki, who was diagnosed in 2009. “The drop foot started happening. I was slurring my words. Remembering things was more difficult for me, and I was more tired.” So Nikki turned to the Pilates Reformer. As a dancer in college, Nikki had taken a Pilates Reformer class, and she thought that would be just the thing she needed to begin her recovery. Alexis Frankel is Nikki’s Pilates Reformer instructor at Twisters Wellness Center in Ambler, PA. “Pilates is really great for everyone, but there are some particular elements that have proven really helpful for people who are challenged with MS,” said Alexis, who has taught Pilates Reformer for three years. “Everything is repetitive, and there’s an intense amount of focus on very small movements that is incredibly helpful for rehabilitating and training the body.” The Reformer is a machine with a moving surface, and the user lays flat on top of it. The surface is connected to springs that cause resistance. There are also straps and a foot bar that allow you to do foot and leg work, as well as upper body exercise.

NIKKI KAHN USING THE PILATES REFORMER Sylvia Byrd-Leitner opened the Pilates Core Center 11 years ago. She’s passionate about getting people excited about exercising especially people who have had a difficult time with exercise in the past. During training sessions, Sylvia maintains an enthusiastic attitude and is hyper-aware of any restrictions or injuries. She checks in throughout the session to make sure you’re doing okay, and makes you feel comfortable at all times. “Joseph Pilates developed his equipment to be assistive, because he started working with people who needed rehab in a hospital,” explained Sylvia, who co-owns the studio with partner Diane Grossman. “We organize the equipment so you can be successful and it makes you feel good because you can accomplish it.”

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Sylvia suggests starting out with a private session, so an instructor can personally evaluate you and come up with a plan for your training. One of the main advantages of the Pilates Reformer is that it’s good for people at all levels of fitness. “You don’t have to be an athlete to do it,” said Alexis. “You can begin at any level of strength and you’ll only get stronger.” Nikki explained, “Let’s say you are having trouble with your right arm, and you can’t use it. You don’t have to use it with the Reformer. It’s exactly what someone who has MS [needs], who has a specific area of their body that they need to focus on and help retrain. And you can do that so accurately by doing the Reformer.” After getting into an exercise routine, Nikki found herself slowly getting better. Her walking got better and her foot wasn’t dropping. The Reformer was working, and now Nikki wants to make sure everyone with MS knows about the machine. “I think anyone with MS can go to any Pilates Reformer class,” she said. “A lot of the classes are small, and you can tell your teacher about whatever your ailment may be. As long as you can communicate what you want to work on, like drop foot, they can teach you movements on the Reformer to help improve that specific issue.” n

LOCAL PILATES CLASSES Be sure to mention this article to the following Pilates Studios to receive a discount.

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ROCKFORDPILATES.WORDPRESS.COM

MS CONNECTION: 2016 ISSUE 3

EMPLOYMENT

8 WAYS TO MANAGE AFTER LOSING YOUR JOB ADAPTED FROM STEPHEN VISCUSI’S BOOK “BULLETPROOF YOUR JOB.”

Our last article focused on steps to take if you are afraid you might lose your job; but what can you do if you did actually lose your job? Whether you were laid off, fired, or even decided to leave a position on your own, the loss of a job can be overwhelming. To help ease you through the process we offer the following tips to assist you in moving forward.

1. Before you go, offer to your employer

to work part time or per-diem as a consultant for needed projects.

2. Find out about your benefits and

compensation options. Are you entitled to severance? Try to negotiate a package including paid medical costs for several months.

3. Don’t burn bridges! Be sure to take with

you written references from supervisors, copies of past performance evaluations, any letters and/or e-mails from clients expressing positive feedback and a copy of your job description.

4. Once you have left, register with

unemployment and your local OneStop office. Also, register with your local Vocational Rehabilitation office for possible training in another field or assistance with placement.

5. Enroll at temporary agencies to get

work on an as-needed basis. There may be jobs available that are not your ideal but they can get you through tough financial times. Also, it’s important to remember, you are always more marketable when you have a job than when you are unemployed. Keep your resume up to date!

6. Seek help if you are feeling down.

Work is a large part of our identity. When someone has just been through a layoff, loss of this identity along with loss of income can cause some people to lose hope. The MS Society can connect you with counselors that you can talk to and help you through this difficult time.

NATIONALMSSOCIETY.ORG | 1-800-344-4867 7. Join a work support group. There is

strength in numbers. Sometimes knowing youâ&#x20AC;&#x2122;re not alone and talking to others experiencing the same frustrations you are facing can give you the necessary support to help get you through this difficult time. There are groups out there that meet who are actively seeking employment. The group can provide support and job leads to members who have recently become unemployed. You can also check with your local MS chapter for a listing of MS support groups in your area.

If you have an employment related question you would like answered, such as workplace disclosure, social security benefits, reasonable accommodations or you are thinking about returning to work and not sure where to start, we can help. Contact Christina L. Forster, MA, CRC at christina.forster@nmss.org or by calling 215-271-1500. Information is also available at www.nationalMSsociety.org/ResourcesSupport/Employment. n

8. Remember, whether or not you lose

your job, being able to deal with any challenges that you encounter now will increase your self-confidence and help you face the next challenge, whatever it may be.

SEPTEMBER 10-11, 2016. REGISTER NOW.

MS CONNECTION: 2016 ISSUE 3

ADVOCACY

DELAWARE ACTIVISTS HELP PASS LAW The doctor told Dave Marchione he had three options to treat his MS. They asked him which one he wanted to try. It was 1999, and Dave had some questions. “What is MS? Where’d it come from?” Dave remembers asking his doctor. “No one in my family ever had it. The doctor said possibly in 10 years it may affect the way I walk.” Dave was a printer, and his job required him to stand all day. A few years after his diagnosis, he just couldn’t do it anymore. These days, Dave and his wife, Lisa, confront the challenges of MS every day. “We’ve been together 33 years,” says Dave. “And now it’s more than half the time we’ve been living with MS.” Lisa adds, “We’ve had a third partner in our marriage for 17 years.” That third partner in their marriage has led to a lot of changes. Dave now uses a power wheelchair, and Lisa has become his full time caregiver. Routine activities have now become very difficult. Just to go upstairs, Lisa has to transfer Dave from his power wheelchair to the stair lift. Once upstairs, she helps transfer him to a wheelchair. After that, another

LISA AND DAVE MARCHIONE transfer to the toilet, from the toilet back to the wheelchair, then to the bed. If that sounds exhausting, that’s because it is. Their nighttime routine takes about 45 minutes if everything is going smoothly. “We were never taught how to transfer. We just figured it out ourselves,” says Lisa. Lisa and Dave recognized that a lack of training for caregivers was a problem that needed to be addressed, so Lisa took the fight to the Delaware House of Representatives. On June 22, 2016, she testified on behalf of the CARE Act, legislation that will ensure a designated caregiver is provided basic training before a patient is discharged from the hospital. “If things don’t change, it’s not good for us,” explains Lisa. “But it’s also not good for a lot of people.” After passing in the House, the CARE Act was sent to the Senate for a vote. On June 30, it passed, 20-1, and will become law in Delaware.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

But Lisa isn’t stopping there. Dave says that she’s stubborn, and Lisa agrees. She now has her sights set on making a real difference in how people with disabilities are treated. But she doesn’t want to do it alone. She makes an impassioned plea to anyone who has ever noticed a problem with the way things are. “If we don’t speak up and tell people what obstacles there are, or what problems we face – whether they’re with not getting training on how to use equipment, or not being able to afford medication – if we don’t make people aware that there are issues, they won’t know that we’re struggling.”

“IF WE DON’T SPEAK UP AND TELL PEOPLE WHAT OBSTACLES THERE ARE, OR WHAT PROBLEMS WE FACE – IF WE DON’T MAKE PEOPLE AWARE THAT THERE ARE ISSUES, THEY WON’T KNOW THAT WE’RE STRUGGLING.” If you want to take action like Lisa has, you can join our network of MS Activists who are committed to making the world a better place for everyone living with a disability. n

LISA AND DAVE MARCHIONE IN THEIR NEWARK, DE HOME

To learn more about our advocacy efforts or how you can help, please visit www. nationalMSsociety.org/becomeanactivist or contact takeaction@nmss.org or 215-271-1500.

PEOPLE OF ALL AGES, ABILITIES AND BACKGROUNDS ARE WELCOME TO PARTICIPATE IN OUR EVENTS OR LEND THEIR PROFESSIONAL TALENTS TO SPECIAL PROJECTS IN OUR OFFICE. THE CHAPTER WELCOMES THE DIVERSITY THAT VOLUNTEERS BRING TO OUR VISION OF CREATING A WORLD FREE OF MS. WE CAN’T FULFILL THE PROMISE OF OUR MISSION WITHOUT YOU.

OPPORTUNTIES INCLUDE: CHALLENGE WALK MS SEPT. 10 & 11 • BIKE MS: BIKE TO THE BAY SEPT. 10 & 11 BIKE MS: CITY TO SHORE SEPT. 24 & 25 • THANKSGIVING DAY MS RUN NOV. 24

BRIGHT STUDENTS RECEIVE SOCIETY SCHOLARSHIPS The National MS Society has awarded scholarships to 26 local students through its annual scholarship program. Top scholars may be given future awards, up to four years, for their undergraduate program as long as they are in good academic standing and reapply to the program each year. The program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent who does; or anybody living with MS who has not been to a post-secondary school. Scholarships range from $1,000 to $3,000 and typically cover one year.

MS CONNECTION: 2016 ISSUE 3

PHOTO NOT PROVIDED Olivia Ciabattoni-Gausch Sinking Spring, PA York College of Pennsylvania Sociology

Maredyth Daily East Fallowfield, PA Millersville University Education

Jesse Dubrow Cherry Hill, NJ Temple University Finance

Kaitlyn Ferreri Limerick, PA Drexel University Elementary Education

Victor Flamini Medford, NJ Johns Hopkins University Biomedical Engineering

Maggie Hennelly Warminster, PA West Chester University Early Education

Information about scholarships for 2016-17 can be found on the National MS Society website, nationalMSsociety.org/scholarship. Congratulations to this yearâ&#x20AC;&#x2122;s outstanding scholarship recipients and best wishes as you pursue your academic dreams this fall! n

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Tahira Islam Philadelphia, PA University of Pennsylvania

Briana Jones * Philadelphia, PA Pennsylvania State University Biochemistry

Miranda Mangano Cape May Court House, NJ Univ. of Massachusetts, Amherst Horticulture/Sciences

Chloe McCormick East Stroudsburg, PA Indiana University Bloomington Marketing

Jacqueline McDevitt * Mohrsville, PA Ithaca College Communications

Madeline McDevitt * Mohrsville, PA West Chester University Nutrition and Dietetics

Sara Mithani Cresco, PA University of Scranton Biology

John Ost-Prisco Downingtown, PA University of Pittsburgh Mechanical Engineering

Eleanor Parks Philadelphia, PA Colorado Christian University Biblical Studies/ Communications

Alexander Payne * West Chester, PA University of North Carolina at Chapel Hill Biology

Bryan Rodriguez * Philadelphia, PA University of Pennsylvania International Relations

Joshua Rodriguez Philadelphia, PA Drexel University Entrepreneurship

MS CONNECTION: 2016 ISSUE 3

Zoe Shute * Deptford, NJ George Washington University Business Administration

Anthony Smentkowski Wilmington, DE University of Delaware Finance

Gianna Tucker Ridley Park, PA Pace University Business

Timothy Walters Bethlehem, PA University of Michigan Computer Science

Rachel Weber Berwyn, PA Boston College Risk Management

Amanda Williams Millsboro, DE Eastern Mennonite University Biology

* Renewal Scholarship Recipients

LOCAL SCHOLARSHIP RECIPIENT’S GOALS ARE OUT OF THIS WORLD Amanda Williams has some lofty goals, and she’s not about to let MS stand in her way. The 20 year old junior at Eastern Mennonite University is double majoring in Biology and Environmental Sciences, all while playing soccer for her school’s team. This year, she was one of over 800 students across the country to receive a scholarship from the MS Society.

AMANDA WILLIAMS

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“I want to be an astronaut,” Amanda, a native of Millsboro, Delaware, said. “My hope would be to do biological or environmental science type of research in the International Space Station.” Amanda has come a long way since she first started noticing the symptoms of MS during her freshman year of college, in the middle of soccer season. At first she just thought it was the stress of schoolwork and playing soccer. But when she started having trouble focusing and speaking, she decided to go to the hospital where she was diagnosed with MS. Sitting in the hospital, Amanda said, “I was in a state of denial, thinking there’s no way; this must just be a mistake.” Now she knows that she will have to work with, and sometimes work around, her MS. “It’s something that I’m going to have to overcome, not only in soccer but in other things,” she said. “I can’t let the fact that I have MS be a reason why I don’t give my hardest.” Less than two years after being diagnosed, Amanda has learned a lot about the disease and how to listen to her body. She’s committed to staying physically active, even though it’s difficult at times. “I feel like when I’m more active I have less symptoms,” she explained. “I realized that

AMANDA WILLIAMS once I stop [exercising], my dizziness comes back and it’s a lot harder to do things.”

“I CAN’T LET THE FACT THAT I HAVE MS BE A REASON WHY I DON’T GIVE MY HARDEST.” Amanda is taking an internship at the University of Delaware this summer and is looking forward to her junior year. But she already has her sights set on graduate school. And after that, it’s to the stars. n

MS CONNECTION: 2016 ISSUE 3

I RIDE WITH MS: CHRIS ATKINS In September, Chris Atkins will get on his bike and ride 180 miles over two days, traveling from Cherry Hill to Ocean City, NJ in the Bike MS: City to Shore Ride. This accomplishment will be made all the more impressive because Chris, a physical education teacher in West Virginia, is living with multiple sclerosis. “To be a part of something this big will be really neat,” Chris said. “Knowing that a lot of those people are riding to help cure MS, and to see all those people there for that cause really means a lot to me.”

CHRIS ATKINS, DETERMINED TO HELP END MS

Chris got involved with the MS Society soon after he was diagnosed in 2008. He started out by doing local Walk MS events with his family, friends and co-workers. One year, he was able to raise thousands of dollars at his elementary school by selling MS Society paper feet. They put the feet up all around school, and Chris still remembers how amazed he was that all of the students rallied around him and the cause.

THEY PUT THE FEET UP ALL AROUND SCHOOL, AND CHRIS STILL REMEMBERS HOW AMAZED HE WAS THAT ALL OF THE STUDENTS RALLIED AROUND HIM AND THE CAUSE.

CHRIS AND HIS TRAINING PARTNER, GREG (LEFT) CROSS THE FINISH LINE AT BIKE MS: BREAKAWAY TO THE BEACH IN THE CAROLINAS

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23 because he didn’t feel like he had trained enough. This year, after doing extensive research, Chris settled on coming to New Jersey to take part in City to Shore.

“I SET THE GOAL TO DO AS MANY BIKE MS RIDES AS I COULD DO.” CHRIS ATKINS (TOP LEFT) WITH MEMBERS OF THE I RIDE WITH MS PROGRAM In 2013, Chris completed his first Bike MS ride in North Carolina. “After doing that first ride,” Chris explained, “I set the goal to do as many Bike MS rides as I could do.”

Even though training can be difficult with his symptoms, Chris’s training partner, Greg, stays with him every step of the way. They’ve done both rides together, and they are committed to riding as many rides as possible. Chris said, triumphantly, “We have a lot more rides in our future. n

The following year he did the Chesapeake Challenge in Maryland. He skipped last year

BIKE TO THE BAY SEPT. 10 & 11 CITY TO SHORE SEPT. 24 & 25

MS CONNECTION: 2016 ISSUE 3

HOW TO START YOUR OWN FUNDRAISER The MS Societyâ&#x20AC;&#x2122;s Do It Yourself (DIY) fundraising campaign is a way for you to raise awareness and funds for MS any way you want. There are endless ways to get involved. Host a fundraising event, start a fundraising campaign with email or social media, or take on a personal challenge of your choice. Take your fundraising viral with social media and get everyone involved. Michael Conelias took his love of music and created Mikey C & Friends Rock 4 MS. Hosted at The Clubhouse Grille and The Bethlehem Golf Club, the event featured bands The Aardvarks, 3AM and The Boogie Stew, all rocking out for MS. In his first year of the event, Michael raised more

than $20,000, much more than expected. Michael hopes to grow the event and raise more funds and MS awareness this year. If youâ&#x20AC;&#x2122;re interested in starting your own DIY fundraising campaign, contact Maria C. Oberst, Special Events Coordinator, at (267) 765-5107 or maria.oberst@nmss.org. n

NOVEMBER 18

World Cafe Live at The Queen, Wilmington, DE MSquerade.org

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GADGET CORNER

TRANSFER BOARDS Transferring from a wheelchair is an important aspect of caring for someone living with a disability, yet it is not often talked about. Transfer boards can make moving in and out of a wheelchair much easier. Susan Kane, MS, OTR/L, CAPS, an Occupational Therapist and Owner of OT Solutions recommends two transfer boards: The Beasy Board Transfer System and the Drive Transfer Board. The Beasy Board has a disk that helps for pivoting and sliding on top of the board. The Drive Transfer Board is less expensive and has two slotted openings for your hands. Both are good options for people looking to make transfers easier and safer. You can find the transfer boards on Amazon and other online retailers.

The National MS Society, Greater Delaware Valley Chapter is seeking nominations for new trustees. All members of the Society are eligible to nominate candidates for the board of trustees. Please provide the name, address, phone number, e-mail address and a brief background of the nominee, in addition to your own name, address, phone number and e-mail address. Nominations must be received by September 1. Please send nominations to: Nominating Committee, National MS Society 30 S. 17th Street, Suite 800 Philadelphia, PA 19103 For more information about the board nomination process or the chapterâ&#x20AC;&#x2122;s governance, please call 1-800-344-4867.

MS CONNECTION: 2016 ISSUE 3

FACE OF MS: DENISE FRANKLIN DENISE FRANKLIN OF PERASIE, PA WAS DIAGNOSED WITH MS IN 2000. SINCE THEN, SHE HAS BEEN AN INCREDIBLE RESOURCE FOR THE NATIONAL MS SOCIETY BY FUNDRAISING, STARTING A SUPPORT GROUP, AND BECOMING A DISTRICT ACTIVIST LEADER. THIS YEAR, SHE WAS NOMINATED AND NAMED AN MS CHAMPION TO RECOGNIZE ALL SHE HAS ACCOMPLISHED. WHAT WAS HAPPENING LEADING UP TO YOUR DIAGNOSIS? I was a healthcare worker. My kids were younger and I was working and doing a million different extracurricular activities. And I was sitting at my desk one day and I had this weird thing happen where I thought I was going to faint and I didn’t faint. I was working with a bunch of nurses and they said “we think you had a seizure”. Even when I was getting my MRI I thought, “this is nuts, there’s nothing wrong with me.” So basically, there was something wrong with me. They thought the little seizure thing I had was related to a lesion I had. That’s how I got diagnosed.

DENISE FRANKLIN, DIAGNOSED 2000 HAS YOUR MS CHANGED OVER THE LAST 16 YEARS? I worked until four years ago. I would have kept working but I was in nursing and my cognitive issues were getting too hard to manage with everyday life. And my doctors kept saying you should really think about stopping working. So I cut back my hours, cut back my workload, and it just wasn’t working. I am very lucky. Honestly, no one would even know looking at me. I can still get around. This doesn’t mean that things are great every day. I still need steroids a couple times a year. But I’ve had worse times. The first couple years after I was diagnosed I was on steroids all the time. Until I changed therapies and it seemed to get better.

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It’s a struggle to get to the right medication. It’s not like I can jog a mile or anything. And there are times that are bad and I have a lot of thinking issues. I’ve gone to conferences with the MS Society. And the cognitive thing is this huge invisible symptom that people don’t understand. And when I get lost and confused, I just shut down.

WHAT WAS IT LIKE RAISING CHILDREN WITH YOUR MS? My daughter is 24, my son is 21. So they were elementary school age. It was hard to tell them because you don’t know what’s going to happen. I’m a pretty positive person and I always felt like wallowing isn’t going to help anything anyway. I didn’t even tell them at first. You don’t want to tell them until you’re sure and that takes a while. I really tried to make sure that they were not affected as much as possible. I tried to keep doing things. I was coaching cheerleading when my daughter was younger. My doctor used to say, you have this candle every day. And when it starts out, you’re burning it and you’ll only have so much left at the end of the day. You have to spend that wisely.

HOW DID YOU GET STARTED FUNDRAISING FOR THE MS SOCIETY? In the beginning – obviously my husband, kids and family knew – but they and my friends wanted me to start this team. The last few years were when I really got going with the fundraising. I’m on the [Walk MS] planning committee.

27 It was only the first couple years that I was really timid about letting people know, and then I just kind of morphed into it. And then I just started really pushing to raise money. We’ve really pushed the focus to getting a good Walk MS team fundraising. I started fundraising because I know where the money goes. I know that so many things wouldn’t be happening without the MS Society. And I’m not just talking about drugs getting approved. I’m talking about programs that help people and services that pay for doctor visits and MRI costs.

YOU STARTED A SUPPORT GROUP IN 2013. WHY WAS THAT IMPORTANT TO YOU? It made me feel good to help people. We have a really fun group. It’s very positive. When we decided to start this group we said we need to keep it educational but positive. We have speakers 90% of the time. Sometimes we’ll do an offsite craft day. We try to make it a friendship support group. Providing the support - but it’s not just 20 people that show up once a month. We have connections to each other, even though we didn’t know each other for the most part before. Honestly, it’s the best thing I’ve ever done as far as the MS Society goes. I get more out of it than I put into it. Running the support group is a support thing for me. It’s like therapy. n

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EXIT STAGE NEVER. TOGETHER WE ARE STRONGER

Amy Meisner was diagnosed with MS in 1997. For someone who has always danced, MS would seem like the end. But for Amy, it means the start of a new chapter. She’ll never leave the floor, still dances from her wheelchair, and is a great choreographer. Embracing Amy’s undying passion, the National MS Society teamed up with LaTonya Swann to create an entirely new and inspired dance experience through virtual reality. See their experience and find out how you can share yours at WeAreStrongerThanMS.org.