MS Connection: 2015 Issue 2 by Kevin Moffitt

2015 ISSUE 2 DELAWARE, SOUTHEASTERN PENNSYLVANIA & SOUTH JERSEY

MSCONNECTION NEWSLETTER A NEW LEASH ON LIFE Over the last six years, Cassie has been to some amazing places. She’s been to some of the finest restaurants and some of the biggest dives. She’s been on a cruise. She’s even been to a rock concert. But Cassie’s life is not all fun and games. She’s a service dog, and when her harness goes on, she has a job to do. “Having a service dog is wonderful, but it’s a big commitment,” says Kathy Kimmel, who was diagnosed with multiple sclerosis in 1995 and was matched with Cassie in 2009. “However, the commitment is worth it.”

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INSIDE 13 THIS ISSUE

EMPLOYMENT DISCRIMINATION

16 21

24 30

I RIDE WITH MS: DANNY SILVERBERG

HEAT AND COGNITION

LOCAL STUDENTS RECEIVE SOCIETY SCHOLARSHIPS

FACE OF MS: MARI SHAW

MS CONNECTION: 2015 ISSUE 2

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-FIGHT-MS today to be added to our electronic distribution lists.

GREATER DELAWARE VALLEY CHAPTER PHILADELPHIA OFFICE

GREATER DELAWARE VALLEY CHAPTER WILMINGTON OFFICE

National Multiple Sclerosis Society 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611

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

ÂŠ2015 National Multiple Sclerosis Society, Greater Delaware Valley Chapter

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.

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.

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PRESIDENT’S MESSAGE

PARTNERSHIPS MAKE US STRONGER

TAMI CAESAR, PRESIDENT

This issue’s cover story highlights the role a service dog is playing in the life of Kathy Kimmel as she faces the e v e r- i n c r e a s i n g challenges of progressive MS.

But it’s more than the story of one woman and her trusty service dog. This article is also about how the National MS Society strives to work with other community groups such as Canine Partners for Life to have the greatest and most positive impact possible. As someone who has worked at the MS Society for more than two decades, I have witnessed the varied and sometimes overwhelming obstacles that MS symptoms can create. That’s why I, our staff and our leadership volunteers believe that we need to work with an ever-expanding selection of community organizations, agencies and corporate sponsors. Quite frankly, the problems caused by multiple sclerosis are much too big for

one organization to address. We must work collaboratively to develop and implement innovative solutions. Over the past four years the Greater Delaware Valley Chapter has focused on building partnerships with organizations across our area who can play a pivotal role in helping us assist people affected by MS. Some key examples you may be familiar with include Total Rehab and Fitness, Good Shepherd Rehab, Easter Seals Delaware, the Utility Emergency Services Fund and the U. S. Department of Veterans Affairs. In all, our local services team managed to leverage more than $260,000 in assistance from other organizations in 2014, and we are on track to be well over $300,000 this year. These leveraged funds go directly toward increasing the amount and availability of local services provided to people struggling with multiple sclerosis. We are proud of our community partnerships but know we can do more. That’s where you come in: if you know of a health care provider, community resource or another organization that may be able to help us move our mission forward, let us know. Send your suggestions to pae@nmss.org or call us at 1-800-FIGHT-MS, option 2. Sincerely, Tami Caesar, President

UPCOMING PROGRAMS 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.

MS CONNECTION: 2015 ISSUE 2

GENDER DIFFERENCES IN MS JULY 21 • 7 - 8 PM JULY 23 • 10 - 11 PM TELELEARNING OPPORTUNITY Men and women are affected by MS differently – join Dr. Barbara Giesser and Dr. Rhonda Voskuhl of UCLA to learn why and how those differences are important. Upon registration, you will receive the weblink and call-in number.

SSDI WORKSHOP LEHIGH VALLEY, PA • SEPTEMBER 15

TALK MS KING OF PRUSSIA, PA • JUNE 27

Learn the ins and outs of Social Security Disability benefits at a workshop featuring Jamie R. Hall, Esq., an attorney specializing in disability issues.

Dr. Suzanne Smeltzer, Professor and Director of Nursing Research at Villanova University, will give advice on how to communicate more effectively with your doctor.

PREPARING FOR MS DOCTOR VISITS SEPTEMBER 15 • 7 - 8 PM SEPTEMBER 17 • 10 - 11 PM TELELEARNING OPPORTUNITY

ASK THE EMPLOYMENT SPECIALIST CONSULTATION DAY WILMINGTON, DE • JULY 14 • 11 AM - 7 PM DOVER, DE • JULY 16 • 11 AM - 7 PM

Learn tips to prepare for successful visits with your doctor. Kathy Costello, MSCN, Associate Vice President of Clinical Care, National MS Society shares ideas on how to build a true partnership with your provider.

Do you have questions about employment and MS? Schedule an in-person or phone consultation with the National MS Society’s employment services manager, Christina L. Forster, MA, CRC.

Upon registration, you will receive the weblink and call-in number.

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UPCOMING FUNDRAISING EVENTS 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.

ANNUAL MEETINGS 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. Registration for the Annual Meetings is not yet open. Please check back in the Fall for more information.

BERTIE’S INN BELT SANDER RACE READING, PA • JULY 11 CHALLENGE WALK MS EASTON, MD • SEPTEMBER 12 & 13 BIKE MS: BIKE TO THE BAY REHOBOTH BEACH, DE • SEPTEMBER 26 & 27 BIKE MS: CITY TO SHORE OCEAN CITY, NJ • OCTOBER 3 & 4 LEADERS CIRCLE AWARDS PHILADELPHIA, PA • OCTOBER 6 THE RIGHT NOTES SOMERS POINT, NJ • OCTOBER 8 TAKE A BITE OUT OF MS VORHEES, NJ • OCTOBER 15

MS CONNECTION: 2015 ISSUE 2

NEWS BRIEFS

STUDY EXPLORES WHY IMMUNE THERAPIES DON’T WORK IN PROGRESSIVE MS

RESEARCHERS SHOW THAT “OLD” TREATMENTS CAN MAKE “NEW” MYELIN

FDA APPROVES A GENERIC FORM OF COPAXONE® FOR RELAPSING MS

Mika Komori, MD, PhD (NIH) and team examined spinal fluid samples from 386 people with progressive and relapsing MS and people without MS to determine the numbers and characteristics of various immune cells. They observed indicators of inflammation in the spinal fluid of people with progressive MS, and that their immune cells were more likely to be embedded in the brain and spinal cord, whereas the cells in relapsing MS were circulating in the blood and lymph system. They suggest that treatments for progressive MS need to penetrate the central nervous system in order to work.

A team of researchers at Case Western Research University in Ohio funded by the National Institutes of Health have shown that topical therapies used to treat skin conditions can stimulate immature cells to make new myelin in mice with MS-like disease, and in human cells isolated in the laboratory. The team is working now to understand the mechanisms for this success, so that they can develop these treatments for safe clinical study in people with MS.

The U.S. Food and Drug Administration has approved a generic form of Copaxone® (glatiramer acetate), called “Glatopa”™ (Sandoz, a Novartis company, developed with Momenta) as a diseasemodifying therapy for people with relapsing forms of MS, including those who have experienced a first clinical episode and have MRI features consistent with MS. The generic medication is a 20mg dose injected under the skin every day. This approval means that the manufacturer provided evidence that this generic medication is equivalent to the brand-name drug (Copaxone®). There is no information yet on when Glatopa will be available by prescription in the United States, or what it might cost.

BLOOD PRESSURE MEDICATION PREVENTS MYELIN DAMAGE AND REDUCES MS-LIKE SYMPTOMS IN MICE Researchers at the University of Chicago report that the blood pressure medication guanabenz increases the

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survival of myelin-making cells and reduces symptoms in MS-like disease in mice. First author Sharon Way, PhD, was funded in this work by a postdoctoral fellowship from the National MS Society, supported in part by the Dave Tomlinson Research Fund. The medication is now being tested for its potential to treat people with MS.

IS COFFEE PROTECTIVE AGAINST MS? Previous studies suggest that caffeine may protect against Alzheimer’s and Parkinson’s disease, but there haven’t been definitive studies in MS. An international team led by Ellen Mowry, MD (Johns Hopkins University) looked at coffee consumption in two large data sets – a group of 1,629 Swedish people with MS and 2,807 people without MS, and 584 people with MS and 581 people without MS enrolled in the Kaiser Permanente health plan of Northern California. In the Swedish study, drinking 6 cups of coffee a day was associated with a

reduced risk of developing MS, and four cups a day did the same in the American study. Studies like this may help determine how to prevent MS in the future, but don’t speak to whether or how drinking coffee may impact MS in people who already have the disease.

MS TRIAL ALERT FOR PEOPLE LIVING WITH MS Do you have difficulty staying motivated to engage in physical activity on a regular basis because of fatigue and low motivation? Have you ever wished you received social support from peers and experts on how to engage in physical activity and manage your fatigue? If yes, a new research study is testing the effectiveness of three educational programs delivered entirely over the phone. Participating in the study will involve filling out questionnaires and engaging in several group and oneto-one phone calls over the course of 24 weeks. You will be given a $25 gift card or a telephone and headset to keep after the study.

07 To participate you must be between the age of 18 65, not regularly physically active, able to walk 25 feet with or without a cane, have no severe cardiopulmonary conditions and reside in one of the following states: Ohio, Pennsylvania, Michigan, Indiana, Illinois, Kentucky, or West Virginia. Dr. Matthew Plow from Case Western Reserve University is leading the study, with funding from the National Multiple Sclerosis Society. For more information, or to see if you are eligible, please call 216-368-0510 or 216368-4879. n

Visit us online at nationalMSsociety.org/ research to stay on top of the latest in MS research.

MS CONNECTION: 2015 ISSUE 2

CONTINUED FROM COVER BY KERRY MCKENZIE

Cassie has short, golden hair and deep brown eyes. When she is working, she is hyperfocused with a serious, but not stern look on her face. When she’s not working, she is playful and kind with a tireless smile. She is dependable, smart and loyal. Cassie has never left Kathy’s side, and their bond has grown strong. “I used to hesitate to go outside,” says Kathy. “When I’m outside, [Cassie] takes away the disability, in effect, because people are more curious about the dog than they are about me.” Cassie was raised and trained by Canine Partners for Life (CPL), a nonprofit organization that trains service dogs to assist people with a wide range of disabilities, and home companion dogs that provide companionship and emotional support. Their offices are located on a sprawling 45-acre plot of land in Cochranville, PA. Three main buildings dot the landscape: the kennel

CASSIE LISTENS INTENTLY FOR HER NEXT COMMAND FROM KATHY KIMMEL that holds up to 30 service dogs in-training, the office building for a staff of 28, and the dog training facility inside an old barn that came with the property. “It’s our job to take people who are often relying on society — they may be living off of disability, not working, not going to school — and turn them into people who can go to school, get a job, volunteer, pay taxes and make a difference,” says Darlene Sullivan, founder of CPL. “With a service dog, people can live feeling secure. They can feel confident and tackle life’s goals, and not let a disability completely dominate their lives.”

THE LIFE OF A SERVICE DOG Service dogs raised by Canine Partners for Life undergo two years of training before being matched. The dogs learn to pick up dropped objects, provide balance and momentum, assist with dressing and undressing, opening doors, turning on lights and much more. They are also desensitized to typical distractions like vacuum cleaners, cats and loud noises. Once dogs are matched with an applicant, they receive additional training to adapt to the specific needs of that person. A typical service dog works between eight and 10 years. When they retire, they are usually adopted as a pet by their human partner.

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THIS 8-WEEK OLD GOLDEN RETRIEVER PUPPY WILL ONE DAY BECOME A SERVICE DOG All of CPL’s service dogs are trained to wear a harness in their second year of training. Cassie, Kathy Kimmel’s service dog, wears a harness that helps Kathy balance when walking. The harness weighs five pounds and was designed by CPL, which worked with an engineer, chiropractor and

a veterinarian to design and build the harness. Cassie is in the harness for about 8 hours a day, so it’s almost like she works a 9-5 job. When her harness comes off, she becomes a regular, playful dog. She goes to dog parks and has friends in the neighborhood.

WITH A SERVICE DOG, PEOPLE CAN LIVE FEELING SECURE. THEY CAN FEEL CONFIDENT AND TACKLE LIFE’S GOALS, AND NOT LET A DISABILITY COMPLETELY DOMINATE THEIR LIVES.

09 “[Cassie] gives me a sense of independence,” says Kathy. “She also gives my caregiver [husband, Robert] a break. He doesn’t worry about me being alone.” Creating healthier relationships is a big part of what a service dog can do. “What happens when disability enters the family is all of the sudden, everything you do and all of your communication revolves around helping because of the disability,” says Darlene Sullivan, who has a service dog herself for her fibromyalgia and chronic fatigue syndrome. “Meaningful conversations that people normally have disappear because all of the conversation is about needing help and accommodating the disability. So if the dog can take some of that off, and some of the normalcy of a relationship can return, what an awesome gift that is.”

WHAT TO DO IF YOU’RE THINKING ABOUT GETTING A SERVICE DOG

DARLENE SULLIVAN WITH TWO PUPPIES IN TRAINING

If you are thinking about getting a service dog, Darlene urges you to go to an accredited service

MS CONNECTION: 2015 ISSUE 2

dog organization. Canine Partners for Life is accredited through Assistance Dogs International, a coalition of service dog providers that set the precedent for ethics and standards in the industry. “It may be a little more work to go to a quality organization,” she says. “But in the long run, it is definitely worth the effort.” At CPL, once someone applies, their application gets circulated through the entire training staff. The person is then called for an interview so the staff can get to know them better. After the interview, the applicant is placed on a waiting list and will usually wait for one to two years before being matched. CPL accepts applicants from all over the country, and they have placed dogs in nearly every state. They currently have 15 dogs working with people living with MS in seven different states. It costs about $30,000 to raise a service dog and provide lifetime support. However, the cost to an applicant is minimal. CPL suggests a

Just be sure you’re ready, because “it’s a really big commitment,” Darlene says. “Having a service dog is kind of like being married to a two year old forever. Training lasts forever. It’s not a robot — it’s a dog.”

CASSIE WAITS FOR HER NEXT COMMAND donation of $1,000-3,000, but it is not required. They are able to offset the cost by fundraising. “We truly are a public charity,” says Darlene. “All of our funding is coming from individuals, corporations and foundations, with a heavy majority coming from individuals.” One mistake people make with service dogs is thinking “they aren’t disabled enough to get one,” says Darlene. She encourages people to think about getting a dog sooner rather than later. They can keep you healthier longer and really improve the quality of your life — not just physically but mentally.

DARLENE ENCOURAGES EVERYONE TO THINK ABOUT GETTING A DOG SOONER RATHER THAN LATER. THEY CAN KEEP YOU HEALTHIER LONGER AND REALLY IMPROVE THE QUALITY OF YOUR LIFE — NOT JUST PHYSICALLY BUT MENTALLY. For more information on Canine Partners for Life, visit k94life.org. n PHOTOS BY KERRY MCKENZIE

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READER SUBMITTED ESSAY

TR ANSFORMATION THROUGH DISORDER BY MICHELLE BROWN

I observed, through the hospital window, the wind forcing the leaves to applause to a performance they wish they were not a part of; standing still and transforming the sun’s rays into hypnotic colors is their performance of choice. Like the leaves, my life has been forced into a performance that was not my choice. “Your diagnosis is multiple sclerosis” are the lyrics to my doctor’s song. “Everything will be fine, there have been tremendous breakthroughs in medicine towards finding a cure” my doctor chants as he lures me to dance to the melody of his song. I was emotionally paralyzed, for I received the lyrics as a death sentence. My mind could not formulate life beyond the doctor’s song. The disorder stripped away my mobility, income and some friends, but the stripping cannot be compared to what was added. Added to my character was a mental shift from selfishness to selflessness, which shaped my actions for a greater demonstration of compassion, generosity and love. Forced into a state of total dependence on others afforded me the ability to comprehend the dynamics between those who give and those who receive. I’ve learned to be still and listen to the innate spirit and allow it to revolutionize my way of thinking and viewing the world and its inhabitants. I continue to marvel at the amazing metamorphosis that has taken place in my character due to the invasion of multiple sclerosis. Embedded within, this so called debilitating disorder, laid a master guru. This ordinary guru taught me the precious movement of life. I never imagined that the disorder I viewed as my demise would propel me into a higher level of consciousness, a consciousness that has awakened me to the incredible beauty of life.

MS CONNECTION: 2015 ISSUE 2

ASK THE EMPLOYMENT EXPERT

To back up a little for those who may not be aware- private disability is a type of insurance that is often provided as a benefit of employment or can be purchased individually by people who are self-employed. Private disability insurance policies can vary significantly from carrier to carrier and not all employers offer it as a benefit. If you are currently receiving shortterm disability (STD) the conversion to longterm disability (LTD) generally involves an application for benefits. It’s important for you to obtain a copy of the policy to determine the exact procedure for applying for LTD benefits, how much the benefits will be and how long the benefits will last.

CHRISTINA L. FORSTER, MA, CRC EMPLOYMENT SERVICES MANAGER, PA AND DE

Before applying you will want to speak with your doctor to make sure you are on the same page. It’s a good idea to begin a diary of your MS symptoms that you can share with your doctor to show how your symptoms interfere with work. The support of your doctor and proper documentation are key elements in increasing your chances of having your claim approved.

I AM CURRENTLY ON FAMILY MEDICAL LEAVE ACT (FMLA) AS WELL AS SHORT-TERM DISABILITY (STD). I AM LOOKING INTO LONG-TERM DISABILITY (LTD) AND WAS WONDERING HOW HARD IT IS TO APPLY FOR AND WHAT HAPPENS IF I AM DENIED. I HAVE ALSO HEARD THAT YOU ARE REQUIRED TO APPLY FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI) BY YOUR LTD CARRIER. IS THIS TRUE?

Once you submit your application, your insurer will acknowledge receipt of your claim, and it will generally take about 4-6 weeks for your insurer to make a determination about your claim. Sometimes people’s claims are denied. If this happens, do not lose hope. If you are denied you will have the opportunity to appeal your case; make sure you do so in the timelines provided. You may have to provide additional documentation. The National MS Society encourages people with MS whose initial claim

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is denied to consult an attorney with expertise in disability law. Many LTD policies only provide benefits for a few years while others may last longer. Often a LTD carrier will require that an individual apply for Social Security Disability Insurance (SSDI) within a certain time frame. SSDI is a federal disability retirement program that is funded by taxes from employees and employers. When a person is awarded SSDI benefits, the private

disability insurance carrier may offset the individualâ&#x20AC;&#x2122;s payment by what the individual is receiving in SSDI. For example, if an individual is approved for $2,000 per month in LTD and is approved $1,000 a month in SSDI, the private disability insurance carrier may reduce its payment by $1,000 a month. The individual will continue to receive the same amount per month but from two sources instead of one. n

EMPLOYMENT DISCRIMINATION: WHERE TO TURN FOR ASSISTANCE BY STEVEN W. NISSEN, M.S., CRC SENIOR DIRECTOR, EMPLOYMENT AND COMMUNITY PROGRAMS

Research shows that the majority of people with MS have worked. But several years after diagnosis, many people have left the workforce. Reasons for leaving can include difficulties managing symptoms on the job, concerns over disclosure, transportation barriers, and even others in your life saying work is too stressful. We also know that some people leave work because they have experienced discrimination on the job. Laws, including the Americans with Disabilities Act (ADA) and the Rehabilitation Act of 1973, are designed to prevent against discrimination of people with disabilities in the workplace.

The ADA applies to private employers with 15 or more employees, state and local government employers, and the legislative branch of the federal government. Other federal government agencies adhere to the Rehabilitation Act of 1973. Unfortunately, discrimination can still occur. How would you know if you have been discriminated against? Perhaps you were treated differently once you disclosed your MS to your employer. Possibly you were overlooked for promotions. Perhaps you were blatantly terminated after you disclosed you have MS. Harassment on the job with reference to your MS may occur as well.

MS CONNECTION: 2015 ISSUE 2

If you have or are experiencing any of these scenarios, be sure to keep a record of activities. Keep a log, not on your work computer, but instead on your personal computer or in a notebook. Keep track of dates, individuals involved, and what was said or what occurred. If you feel you have experienced discrimination, get connected to resources that can help you navigate the process. Even if your employer is not large enough to abide by the ADA, there oftentimes are state laws that offer broader protection. In some instances, you only have 180 days to file a complaint so be careful not to wait too long. Resources include the following: ■■

■■

U.S. Equal Employment Opportunity Commission (EEOC), http://www. eeoc.gov, 1-800-669-4000 State Fair Employment Practice Agencies, http://askjan.org/cgi-win/ TypeQuery.exe?037 National Employment Lawyers Association (NELA) lawyer referral service, http://exchange.nela.org/ findalawyer

Also, call an MS Navigator at 1-800-3444867 as there may be additional resources and legal professionals in your area to help. According to data from the U.S. Equal Employment Opportunity Commission (EEOC), the enforcement agency of title I (the employment section) of the ADA, approximately half of all ADA title I allegations filed by people with MS involve claims of failure to provide reasonable

accommodations or unlawful discharge. If you do decide to pursue filing a complaint or pursuing legal action, think about what you hope for as an outcome. Are you looking to get your job back or a monetary settlement? Are you looking to have your employer make changes to their policies so as to minimize the likelihood that others will be discriminated in the future? Filing a claim can be time consuming, challenging, and sometimes costly, so it’s important to know what you hope the outcome will be. The National MS Society has several publications dealing with employment issues and your legal rights. Relevant titles include the following: ■■

ADA and People with MS

■■

The Win-Win Approach to Reasonable Accommodations

■■

Know Your Rights: A Legal Guide for People Living with MS

All of these brochures can be downloaded from the National MS Society website at http://www.nationalmssociety.org/ Resources-Support/Library-EducationPrograms/Brochures/Employment-Issues. You can also request them to be sent by mail by calling an MS Navigator at 1-800-3444867. Get informed and connected so you can stay productive in the workplace. n

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Enrolling Now Transcorneal Electrical Stimulation Research Study ■■ Have you been diagnosed with Multiple Sclerosis? ■■ Do you have vision changes? ■■ Are you 18 or order? You may be eligible for a clinical trial at Wills Eye Hospital. Call Today: 215-928-3937 Please mention: TES Study

SAVE THE DATE SAVE THE DATE SAVE THE DATE SAVE THE DATE SAVE THE DATE

MS CONNECTION: 2015 ISSUE 2

I RIDE WITH MS: DANNY SILVERBERG Danny Silverberg was never a cyclist. But everything changed after he was diagnosed with MS in 2009 at the age of 45. “For the first two years, functionality wise, I couldn’t ride,” says Danny. “But you’re motivated to help the cause you’re afflicted with.” Danny just so happened to be good friends with Sid and Jeff Brown, two cyclists on Bike MS: City to Shore’s Team NFI. Throughout Team NFI’s 15 years of riding, they have raised over $380,000, in addition to handling logistics for the ride.

DANNY SILVERBERG, CITY TO SHORE 2014

Two years after Danny’s diagnosis, he was feeling much better from treatment and he

This will be Danny’s fourth year riding. He still loses feeling in his legs pretty quickly on

decided he was going to ride. He thought, “If I can do this, there’s nothing else I can’t do.”

Anyone living with MS who is interested in cycling to support the MS movement can join the program, enjoy special day-of-event benefits and receive a complimentary “I Ride with MS” jersey. Genzyme and MS One to One, and Primal Wear are proud supporters of the I Ride with MS program, available through all 100 Bike MS events nationwide. I Ride with MS participants are not only committed to cycling to create a world free of MS, but to increasing awareness. FOR MORE INFORMATION OR TO REGISTER FOR THE PROGRAM, VISIT BIKEMS.ORG AND CLICK ON “I RIDE WITH MS.”

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a bike, but he says he won’t stop riding until he has a situation where he can’t. This year, his personal goal is to raise $25,000 — a far cry from his first year’s goal of $4,000. “The ride does more than just challenge people. It gives everyone who has MS, or some connection, the opportunity to get involved in something that is going to move research ahead and change where we will be five, 10, and 20 years from now.”

Danny may not have been a cyclist before, but he certainly is now. And he has over 20 family and friends who ride with him every year. He says most of them would have never done something like this. “My goal is to increase awareness and to show people that it’s okay to do something that’s outside of your comfort zone, especially if you’re doing it for a good cause.” n

BIKE THE US FOR MS FUNDS HOMEABLE PROJECTS Phil Cooper, a Top 250 VIP City to Shore cyclist and sponsor, deepened his commitment to the National MS Society by making connections. Phil connected the MS Society to Don Fraser, executive director of Bike the US for MS. Bike the US for MS organizes cross country bike trips that raise awareness for multiple sclerosis research and volunteerism. Phil rode across the country with this group to help raise money for people affected by MS. Don and his organization have since funded home modification projects for local people living with MS who are facing financial difficulties. In total, Bike the US for MS has donated $14,400, completing a bathroom modification, installing a handicap accessible ramp and funding other essential home projects. With the help of Phil, Don and his colleagues at Bike the US for MS, local people affected by MS are able to live safely in their homes. We thank them for their support and dedication to the Society’s mission. Visit biketheusforms.org to learn more. n

18 WHY WE WALK Nicole Quigley’s reason for participating in Walk MS is simple. “I got involved for my mom because she is my world,” says Nicole. “I would do absolutely anything for her."

MS CONNECTION: 2015 ISSUE 2

grown quite savvy at fundraising. She holds three main fundraising events, writes letters to family and friends asking for support, and even raffles off signed apparel from Philadelphia sports teams. This year, she auctioned off a ball signed by Phillies’ left fielder, Cody Asche.

Denise, Nicole’s mom, was diagnosed with MS in 2003. Nicole was 16 at the time and initially had a hard time dealing with her mom’s diagnosis. She didn’t know anything about MS and she was scared. But when she reached out to the National MS Society, things got a lot less scary.

THIS DISEASE REALLY BROUGHT OUR FAMILY TOGETHER. MY MOM, DAD AND I ARE LIKE THE THREE AMIGOS. WE’RE ALL BEST FRIENDS, AND I REALLY CREDIT THAT TO WHEN MY MOM GOT DIAGNOSED.

“I made a couple calls and they explained everything," says Nicole. “This disease really brought our family together. My mom, dad and I are like the Three Amigos. We’re all best friends, and I really credit that to when my mom got diagnosed."

Even though this year was more stressful than others — Nicole was working two jobs and studying to get her black belt — her commitment never wavered.

Four years after Denise’s diagnosis, Nicole and 10 other family and friends formed their walk team, Denise’s Diamonds. Just nine years later, Nicole is expecting to walk at Tyler State Park with 52 people. Over the years, Nicole has

"I don't plan on ever stopping fundraising,” says Nicole. “I plan on passing this on to my children, and my children's children — until we can find a cure. This is my passion and I'm not ever going to stop." n

LEFT TO RIGHT: NICOLE WITH HER MOM, DENISE, AND DAD, DAVID; NICOLE AND DENISE; DENISE’S DIAMONDS AT WALK MS: TYLER STATE PARK

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WALK MS 2015 RECAP Walk MS 2015 was a resounding success! This year we had walk sites at 20 locations throughout our chapter area, and we were excited to host events in three new locations, such as Cooper River Park in Camden County. Walk MS is a time to celebrate all the progress we’ve made and connect with others in the community. But it is also a fundraising event. Our goal is to raise $2 million, and even though the walks are over, there’s still time to raise vital funds in support of MS research, programs and services. The deadline to give is June 30. n

1 2

3 5

1. 2. 3. 4.

RIDLEY CREEK STATE PARK: MEDIA, PA BUFFALO WILD WINGS: NEWARK, DE NORTH PENN HIGH SCHOOL: LANSDALE, PA SMITHVILLE PARK: BURLINGTON COUNTY, NJ 5. TATNALL BUILDING: HISTORIC DOVER, DE 6. WASHINGTON LAKE PARK: SEWELL, NJ

MS CONNECTION: 2015 ISSUE 2

MISS DELAWARE WORLD RAISES MONEY FOR THE NATIONAL MS SOCIETY In January 2015, Taylor DeMario was crowned Miss Delaware World 2015. Taylor has been competing in pageants for over four years, and she’s been involved with the National MS Society for more than six. She first connected with the Society when a close family member was diagnosed with MS at the age of 18. It’s rare, but not unheard of, for someone to be diagnosed so early in life. Up to five percent of people living with MS experience disease onset before age 16. After her family member’s diagnosis, Taylor wanted to learn everything she could about MS. She decided to form a Walk MS team and start raising money. Over the last six years, she and her family have raised more than $24,000 for the cause. “The MS Society is really accessible,” Taylor says. “I’m always meeting people that have a connection [to MS], and I tell them to make sure to call the MS Society if you have any questions or if you need to talk to somebody.”

MISS DELAWARE PROUDLY SUPPORTS THE NATIONAL MS SOCIETY This year she was the guest speaker at Walk MS: Newark at Buffalo Wild Wings. For Taylor, the advances in research are what keep her energized. She explains, “It’s these huge, huge steps that are being made by the MS Society — it just shows that a cure could be on the horizon.” Looking forward, Taylor will be competing for the title of Miss World America at the end of June. The winner goes on to the Miss World Competition to compete against 120 contestants from around the world. If she makes it to that global stage, Taylor hopes to bring even more attention to the MS cause. n

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LOCAL STUDENTS RECEIVE SOCIETY SCHOLARSHIPS The National MS Society has awarded scholarships to 22 local students through its annual scholarship program. One of those students, Gabrielle Bennetti of Dover, Delaware, was recognized by the National MS Society as a 2015 Top 10 Scholar. Gabrielle was chosen from among 160 applicants to receive this honor. 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.

Jacqueline Ashman Ashland, PA Wilkes University Pharmacy

Mariah Ball Dover, DE Delaware State University Special Education

Ronise Ball Dover, DE Delaware State University Movement Science

Gabrielle Bennetti Dover, DE University of Richmond Biology

Information about scholarships for 2015-16 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

MS CONNECTION: 2015 ISSUE 2

Brittany Dobson Oreland, PA University of Pennsylvania Biology (Pre-Med)

Lindsey Goodchild Langhorne, PA Gwynedd Mercy University Nursing

Derek Hueske* Leesport, PA Kutztown University of PA Computer Science

Briana Jones Philadelphia, PA Penn State University Biochemistry

Janai Keita Philadelphia, PA Behrend College Psychology

Jacqueline McDevitt* Mohrsville, PA Ithaca College Communication Management & Design

Madeline McDevitt Mohrsville, PA Marywood University Nutrition

Siobhan McGirl Turnersville, NJ Seton Hall University Broadcast Journalism

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

Carin Prechtl Wilmington, DE University of Delaware Landscape Design

Bryan Rodriguez* Philadelphia, PA University of Pennsylvania

Lauren Sirianni* Lansdale, PA Temple University MGMT Information System

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

GADGET CORNER

COOLTURE COOLING VEST Julia Ann Scullion East Stroudsburg, PA, Northampton Community College, Electronic Technology

Zoe Shute*, Deptford, NJ George Washington University Pre Business Administration

Lauren Sontupe Bordentown, NJ Stockton College Communications

Blake Tucker Newark, DE Syracuse University Mechanical Engineering

Harry Wagenheim* King of Prussia, PA North Eastern University Music Major

* Renewal Scholarship Recipients

The Coolture signature cooling vest is available in four flexible sizes. The vest is cooled by cooling sheets that activate when you soak them in water and plump up when agitated. After they are activated, the user freezes the sheets and places them in the vest. Expect about three hours of cooling per charge. These vests are perfect for the summer months when heat can exacerbate MS symptoms. Visit coolture.net for details. Members of ActiveMSers - a worldwide community of people living with MS who want information on staying active - can save up to 20% on select cooling vests with reserved coupon codes. To get your discount go to activemsers.org and sign up for their newsletter.

HEAT AND COGNITION BY JULIE STACHOWIAK, PHD

Results from a new study show a link between heat and impaired cognitive function in people with multiple sclerosis. I bet that many, if not most, of you reading this will think, â&#x20AC;&#x153;This is news? I could have told anyone that my thinking (along with other things) is impaired in hot weather.â&#x20AC;? However, this study actually is a big deal, because it is the first time that such a link has been formally demonstrated.

MS CONNECTION: 2015 ISSUE 2

This is important information for many reasons. The study scientists pointed out that this type of seasonality could affect clinical trial results. For instance, if people enrolled in a trial in the summer and were followed for six months through fall and into the winter, a drug to treat cognitive dysfunction (or many other MS symptoms, really) could seem like it was working, when in fact, some of the improvement might simply be due to temperatures dropping.

WHAT YOU CAN DO That is interesting from a scientific perspective, but what does this information about heat and cognition mean for people with MS? There are no treatments that are effective

THE NUMBERS Researchers from the Kessler Foundation, with funding from the National MS Society and the National Institutes of Health, compared cognitive functioning under different temperature conditions in 40 people with MS and 40 people without MS. The data showed that cognitive functioning in people with MS was more affected by hot weather than cognitive functioning in people without MS. On cognitive testing, people with MS performed significantly better on cooler days than they did on warmer days, while people without MS performed the same regardless of the outside temperature. For more information on the study, which was published in Neurology, visit www.nationalMSsociety.org/heatcognition.

COOL LIQUIDS CAN HELP BEAT THE HEAT

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

for cognitive dysfunction, but there are some things we might be able to do to help ourselves. Many of us have strategies we use to stay cool and avoid overheating. Here are a few additional tips you may want to consider:

for only doing one thing at a time – trust me, you will get more done and it will be done better if you don’t try to do it all at once.

ASK FOR ACCOMMODATIONS AT WORK

Treat yourself kindly. Yes, I get mad at my brain for slowing down in the summer and I have gotten frustrated that my work doesn’t get done and I forget things and on top of it, I feel lousy for a good chunk of the year. Guess what? That hasn’t helped me one bit. In fact, it makes everything worse when I let myself get flustered. When I feel these emotions coming on, I try to slow down my reactions and figure out how to make my immediate situation better. Sometimes, dropping everything and having a big cold glass of iced tea is enough to derail the negativity. Other times, it may take a little more effort, like taking a cool shower or making a phone call to a friend. n

You may want to explain to your employer that the hot weather makes things a little harder for you and that you want to do a good job, but need a little help. Be specific in what you want, such as asking for a fan or cooler working area, and why you need it. You could also ask for people to communicate with you in writing, so that you wouldn’t miss anything that might be mentioned in passing – document requests in email or using a shared online calendar might help. For more information about accommodations at work, visit www. nationalMSsociety.org/accommodations or call an MS Navigator® at 1-800-344-4867.

FIX YOUR WORLD I think many of us are our own enemy when it comes to cognitive dysfunction. We try to multitask while living in a world with constant noise and clutter, which leads to stress and frustration when we can’t get everything done or we forget things. Try this: Clean up your house. Turn off the television. Focus on one thing at a time. When you talk on the phone, just concentrate on the conversation – don’t simultaneously fix dinner, surf the Internet and keep an eye on your toddler. You may think you have no time

BE PATIENT

Diagnosed with MS in 2004, Julie Stachowiak is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally published at blog.nationalMSsociety. org.

MS CONNECTION: 2015 ISSUE 2

MS AWARENESS RECAP MS Awareness Week 2015 took place March 2-8. It was unforgettable, with thousands of people liking, sharing and commenting on social media, and hundreds coming to our Walk MS Pep Rallies, Open Houses and Managing Your MS programs. Thank you to everyone who filled out your I Connect posters and uploaded them! We loved seeing all the pictures and your reasons for connecting. MS Awareness Week might be over, but that doesn’t mean we’ll stop raising awareness — and neither should you! Make your voice heard and let people know why you connect. You have the power to make a difference, drive change and create a world free of MS. Here are some pictures of people in the community taking part in MS Awareness Week.

1. PHILADELPHIA MAYOR MICHAEL NUTTER 2. YOUNG MEMBERS OF WALK MS TEAM CANDEE M&MS

3. VLADIMIR MAYER 4. MIKE ALTMANN 5. BAYADA HOME HEALTH CARE 6. BARBARA CLARKE

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

ADVOCACY DURING MS AWARENESS WEEK As part of our ongoing efforts to raise awareness, MS Activists requested that their state and local government officials proclaim March 2-8 as MS Awareness Week. Proclamations recognize the importance of finding the cause and cure of MS and encourage residents to learn more about multiple sclerosis and what they can do to support individuals with MS and their families.

THANK YOU TO THE FOLLOWING STATE AND LOCAL GOVERNMENTS FOR SPREADING MS AWARENESS: ■■

Delaware County (PA) Council

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Pennsylvania State Senate

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Chester County Council

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Borough of Pottstown

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City of Philadelphia

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State of New Jersey

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Pennsylvania House of Representatives

The National Multiple Sclerosis Society depends on the commitment of volunteers at every level of the organization. As one of the nation’s best volunteer-led health agencies, the Society embraces, values and recognizes the work of our volunteers. We can’t fulfill the promise of our mission without you. Women, men and children of all ages 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.

SOME OPPORTUNTIES INCLUDE: CHALLENGE WALK MS EASTON, MD • 9/12 & 9/13 BIKE MS: BIKE TO THE BAY REHOBOTH BEACH, DE • 9/26 & 9/27 BIKE MS: CITY TO SHORE OCEAN CITY, NJ • 10/3 & 10/4 MS SERVICE DAY NEW CASTLE, DE AND PHILADELPHIA, PA • 10/24

28 MS ACTIVISTS AT THE PUBLIC POLICY CONFERENCE BY MARA BROUGH, SENIOR MANAGER OF ADVOCACY, PA & NJ & DEBRA VEENEMA, DIRECTOR OF PROGRAMS AND DELAWARE ADVOCACY

Every year hundreds of MS Activists and Society staff from across the country travel to Washington, D.C. to attend the Society’s annual Public Policy Conference (PPC). The conference took place over three days in March with two days of educational programing and one day on Capitol Hill. This year the Greater Delaware Valley Chapter had eight dedicated volunteer activists join advocacy staff at PPC. Activists heard from experts on how to tell their stories to win the hearts, minds and votes of lawmakers. They also learned about the political climate in Washington. Four federal advocacy priorities were discussed and activists took to Capitol Hill on March 11th to spread our message. Activists held nearly 400 meetings with members of Congress and their staff, including 19 with Pennsylvania representatives, 13 with New Jersey representatives and all three Delaware representatives. Activists asked members to cosponsor and pass the Advancing Research for Neurological Diseases Act of 2015 (H.R 292/ S.849). The

MS CONNECTION: 2015 ISSUE 2

bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases, including multiple sclerosis. By capturing and compiling this data, we will be able to identify pockets of prevalence, demographic data and target funding to these areas for further research and analysis. This new data system could one day lead to a cure for diseases like MS by identifying factors related to environment, medical practices, lifestyle variances and others. Activists also asked members to cosponsor and pass the Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act (H.R 1516/ S1013). This bill creates a separate benefit category under Medicare for CRT, protecting and improving access to these customized products so that people can remain independent and be active members of their communities. It also removes the “in-home” restriction so that products used outside the walls of one’s home will be covered. In addition for asking support on these two pieces of legislation, MS activists were also asking for additional funding for MS research. We asked Congress to fund the National Institutes of Health (NIH) at least $32 billion in fiscal year (FY) 2016. The NIH led to advancements in MS detection and treatment, but MS funding in particular has seen a significant decline in NIH funding over the last four years. We asked Congress to fund the MS Congressionally Directed Medical Research Programs (CDRMP) at $10 million in FY 2016. The CDMRP funds studies that increase knowledge about the cause of MS, improve assessment of the disease and will lead to expanded treatment options. These dedicated

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

29 including Senator Casey from Pennsylvania. In addition, we gained numerous supporters for the Ensuring Access to Quality Complex Rehabilitation Technology Act and signatures on the NIH Dear Colleague funding request letter. We had a record high number of members of Congress show their support for the MS CDRMP letter by signing the Dear Colleague letter and submitting programmatic funding requests.

GINA LISELLA - MS ACTIVIST AND DISTRICT ACTIVIST LEADER FROM PENNSYLVANIA streams of federal funding for biomedical research provides resources to attract new scientists to the field and moves both science and research forward at a faster pace. We had a great impact on the Hill! We gained dozens of cosponsors on the Advancing Research for Neurological Disease Act of 2015 and secured lead sponsors of the Senate version of the bill â&#x20AC;&#x201C;

STATE ACTION DAYS

Overall, the 2015 Public Policy Conference was an amazing experience for all involved â&#x20AC;&#x201C; but there is still work that needs to be done! We are continuing to advocate for policies and programs that benefit people with MS and their families. If you are interested in learning more about our legislative priorities or becoming an MS Activist please contact 215-271-1500 or takeaction@ nmss.org. n

www.nationalMSsociety.org/Chapters/ PAE/Advocate-for-Change

JULY 20 - 24 IN NEW JERSEY AND SEPTEMBER IN PENNSYLVANIA

MS activists, Government Relations Committee members, District Activist Leaders, and other volunteers convene annually to learn about MS advocacy priorities. Through coordinated in-person visits, they share those priorities with State Senators, Representatives, Assembly members, and other policy makers. Volunteers can also participate from the comfort

of their own home or office as a Virtual MS Activist. We will provide you sample messaging and more information about all of the ways you can take action. State Action Days are a great way to get involved as an MS activist! We need YOU to reinforce our advocacy message. Contact Mara Brough at mara.brough@nmss.org for more information.

FACE OF MS: MARI SHAW

MARI SHAW WAS DIAGNOSED WITH MS MORE THAN 30 YEARS AGO, BUT NEVER WENT PUBLIC WITH HER DIAGNOSIS UNTIL NOW. FOLLOWING A SUCCESSFUL CAREER AS A LAWYER IN PHILADELPHIA, SHE HAS WRITTEN A BOOK TITLED PAINTER AND PATAPHYSICIAN THOMAS CHIMES. A LOT OF PEOPLE TALK ABOUT WRITING A BOOK. WHY DID YOU DO IT? A very long time ago I was on an airplane ride with this woman. This woman had an abusive father. She said she’d been in therapy — her father had been emotionally abusive. Her psychiatrist told her to write a book about her father. She didn’t have to publish

MS CONNECTION: 2015 ISSUE 2

it, but just write it. And that made sense to me because the Greeks believed that the only way to get rid of trauma was through playing it out. That’s the source of Greek tragedy. Later, I had a very bad MS experience. I was completely paralyzed and I couldn’t talk for four days. And then I happened to be able to meet this artist whose work I always loved. His name was Thomas Chimes, and he was very famous in New York. He was 71, in his final stage of life. I was in my early 40’s, a lawyer, and ready for an awakening. He was a good father, but he also had a little bit of narcissism, which most artists have. We had this friendship. We met regularly until two days before he died. He told me his most intimate things about the creative process and managing his depression. He also had a father that was overbearing. So he wanted me to write this book when he died.

WHAT IS THE BOOK ABOUT? It’s a combination of our conversations interspersed with chapters about the artist. It’s almost like a play. But it’s really more about friendship and the healing powers of friendship, which were critically important to me.

YOU KEPT YOUR DIAGNOSIS TO YOURSELF FOR A LONG TIME. WHY? My husband didn’t want me to tell anyone that I had MS. Not even my step-children. I just want people not to do that, because

NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

it’s too hard. It did permanent damage to relationships that might have otherwise not been damaged. Because you are depressed, and you’re exhausted, and you can’t do everything. I gave up my partnership in a very big law firm when I was 52. And I could have told them then. But I didn’t. To tell you is a very big step. It’s not exactly going public. But for me it’s a very big step; I was in silence. I also have hesitation because, I’m doing very well, but I don’t want people to have the expectation that they don’t have to take medicine. Just because I got lucky and I’m a very disciplined person, I don’t want people to think that’s the way they’re supposed to be. But I do want them to tell people, and have a friend through it. And I absolutely think meditation is important. I spend a lot of time helping people who have autoimmune diseases and other diseases. I tell them that I have MS. And I see that if they have no mindfulness at all, it doesn’t matter. No matter what they take or do, they’re crippled. Not in the sense they can’t move, but as far as their ability to live.

DID HAVING A CHRONIC ILLNESS, AND THOMAS CHIMES HAVING CANCER CHANGE THE WAY YOU PERCEIVED YOUR ILLNESS? There was an urgency in Tom to really tell me everything. For me, it was just amazing in teaching me how to face death in a thoughtful, accepting way. He believed very

31 much in Homer, and that we have to die so the song remains for the next generation. And that really helped me to see someone who did that. The genuine courage and acceptance of death — which doesn’t mean there weren’t scary parts or pain — but it was just an awesome way to die. I don’t know if I’ll be able to do it the way he did. But it really did impress upon me that I’m so lucky to have these 67 years. I’ve got more things wrong with me than anyone one I know, but I’m still so healthy. I have a great family. I live most of the year here and four months a year in Berlin. I know people all around the world I’ve made so many friends and have learned so much. If I go tomorrow I will have lived well.

DID YOU FIND THAT PEOPLE’S PERCEPTIONS OF YOU CHANGED WHEN THEY LEARNED YOU HAD MS? I didn’t find that at all. In my case, people were just wowed that I managed. I found nobody at all who thought less of me because of it. n

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

LET US HELP WITH YOUR EMPLOYMENT CONCERNS.

DO YOU HAVE AN EMPLOYMENT QUESTION OR CONCERN THAT YOU’D LIKE TO DISCUSS?

If so, schedule an in-person or phone consultation with the National MS Society’s employment services manager, Christina L. Forster, MA, CRC by calling 1-800-FIGHT-MS. CHOOSE YOUR LOCATION AND DATE:

WILMINGTON • JULY 14

DOVER • JULY 16