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SUMMER 2014 Delaware, Southeastern Pennsylvania & South Jersey

MSConnection Newsletter Pediatric MS: Peanut’s Story

What are the chances that a 12-year-old would have MS? were That’s the question physicians and family members of Khalidah Harris MS asking after she suddenly became extremely ill. The overriding belief that ed only strikes people after the age of 20 is why, despite symptoms that includ dah problems with vision, hearing, and motor skills, doctors insisted that Khali must have the flu. 2011, However, her loved ones knew it had to be something more. In January ed an they took Khalidah to AI DuPont Children’s Hospital where they receiv l officia l diagnosis of MS. “Peanut,” as she is better known, spent the next severa speak, months in the hospital, mother at her side, as she relearned how to eat, hear and use her hands. duals While rare, Khalidah’s story is not unique. Up to 5 percent of all indivi diagnosed with MS experience disease onset before age 16.

CONti nued on Page 8

INSIDE 08 16 THIS ISSUE Learn to be Fall Free

Local Students receive society Scholarships

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Upcoming MS Service Day

Managing Symptoms on the Job

Face of MS: LuzSelenia Loeb


02 A MESSAGE from the Executive Vice president, East Region As the Executive Vice President for the East Region of the National MS Society, I work closely with staff and volunteer leadership in chapters that serve families affected by multiple sclerosis in Delaware, Pennsylvania, Craig Robertson South Jersey, Ohio, Maryland, Washington D.C., Virginia and West Virginia. One of the key responsibilities of my role is to provide interim leadership to a chapter during a transitional period. With the departure of Kate Cowperthwait, I assumed the role of Interim Chapter President, effective July 1. I look forward to working with the staff, key volunteers, donors, event participants and community leaders to continue the important work that is being done in Delaware. Kate has had a significant impact on the MS Society, its mission and those affected by multiple sclerosis. On behalf of every person whose life has been impacted by her creativity and commitment over the past

MS connection: SUMMER 2014 23 years, I want thank Kate for everything she has contributed to our shared cause. Her dedication and passion have improved the lives of Delawareans affected by MS. During my time at the National MS Society, I have served as the interim president in a number of chapters for varying lengths of time. My top priority in these situations is take a team approach and work as effectively as possible with everyone involved to make sure there is no disruption in the Society’s ability to raise essential funds while delivering critical programs and services and funding cutting edge research. It is in this spirit that I look forward to working through this transition period with the wonderful staff and volunteers that drive our mission forward in Delaware. With thanks, Craig Robertson


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Letter from the president

The Challenge of a Lifetime

Tami caesar, president Greater Delaware Valley Chapter

For most people diagnosed with MS, one of the toughest realities is the chronic nature of the disease. Knowing that you will live with MS for the rest of your life is incredibly difficult, especially given the unpredictability and inevitable progression that come with the disease.

It’s a lifetime condition that generates a lifetime commitment from the family and friends of those diagnosed, as it does for many of us who work at the National MS Society. I know that commitment is why my counterpart and friend at the Delaware Chapter, Kate Cowperthwait, dedicated her boundless energy and skill to the cause since joining the MS Society in 1990. I thank her for all that she has done for me during my four years here at the Greater Delaware Valley Chapter and for everything she has given to the MS movement.

For every challenge people affected by MS face, someone else is rising to the challenge of MS. LuzSelenia Loeb, featured on page 30, is a perfect example: after her brother was diagnosed with MS, she stepped forward to volunteer her services as a photographer at major fundraising events such as Walk MS and the Women Against MS Luncheon. It was just a little while later that she too was diagnosed. Now, her entire family is involved in our Philadelphia Walk MS event and her son Bryan (page 17) is a 2014 recipient of an MS Society scholarship. Volunteers like Luz get involved because they, like Kate Cowperthwait and the rest of the Society staff across the country, understand how MS impacts those diagnosed and their loved ones. It is what motivates them to rise to the challenge of MS. Our volunteers and staff, many of whom have made a lifelong commitment, make it possible for us to continue to provide meaningful support for people living with multiple sclerosis while fueling the search for more effective treatments and, ultimately, a cure for MS. With sincere appreciation, Tami Caesar


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Kate Cowperthwait: Making her mark against MS

Kate Cowperthwait

After 23 years of distinguished service to the National MS Society and families affected by MS, Kate Cowperthwait has announced her resignation as president of the Delaware Chapter.

Kate has worked tirelessly to improve the lives of people living with MS throughout her career, and the Delaware Chapter’s HomeAble program is a perfect example of the impact she has had on the MS movement. Developed in 1999, this program set out to reduce the number of younger Delawareans in nursing homes. Using community resources, grants and MS funds, the chapter works with each family to make homes more accessible. Later, during the economic downturn, the program was expanded to include rent/mortgage and utility costs.

Kate presenting the Corporation of the year Award at last year’s chapter Annual Meeting Kate has also had a significant impact on the development of the chapter’s fundraising events. In addition to growing the Walk MS, she is most proud of building Bike MS from a $350,000 event to an event that has raised in excess of $1 million. There is also the very successful Thanksgiving Day Run/Walk, which attracts over 3,000 participants each year. “Since the start of Kate’s National MS Society career, the body of knowledge about MS has expanded monumentally and the Society’s force is more powerful than ever,” explains National MS Society CEO Cyndi Zagieboylo. “I thank Kate for all of her hard work and look forward to the day when we get back together with her and others who have contributed so significantly to celebrate a world free of MS.”


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The Delaware and Greater Delaware Valley Chapters of the National MS Society are seeking nominations for new trustees. All members of the Society are eligible to nominate candidates for the board of trustees. Nominations must be mailed by September 1 to the addresses below. 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. For more information about the board nomination process or the chapters’ governance, please call 1-800-344-4867. For DE: Nominating Committee, National MS Society Two Mill Road, Suite 106 Wilmington, DE 19806

For NJ and PA: Nominating Committee, National MS Society 30 S. 17th Street, Suite 800 Philadelphia, PA 19103

September 6 & 7, 2014

CHALLENGEPHILLY.ORG

Challenge Walk MS is more than just a walk. It’s a commitment to the more than 14,000 local people living with MS that you will go the distance to fight this disease. Join us at the beautiful Eastern Shores of Maryland as we walk to find a cure.


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News BRIEFS MS Trial Alert: Investigators Recruiting 250 People with Primaryor SecondaryProgressive MS for Study of Oral Ibudilast Investigators are recruiting for a phase II clinical trial of ibudilast (MN-166, MediciNova, Inc.), an oral agent, in 250 people with progressive forms of MS. The study, called the SPRINT-MS trial, is principally funded by the National Institutes of Neurological Diseases and Stroke (NINDS), with additional support by MediciNova, the company that will supply ibudilast, and the National MS Society. The study will be conducted through the NeuroNEXT Network, a clinical trials initiative

MS connection: SUMMER 2014

of the National Institutes of Health. Robert Fox, MD (Cleveland Clinic Foundation) is the principal investigator. For the full article, visit www.nationalmssociety. org/About-the-Society/ News/MS-Trial-AlertInvestigators-Recruiting250-People

International Committee ReExamines Definitions of the Courses of MS Multiple sclerosis manifests itself in many different ways and different courses, and the path of an individual’s MS is usually defined by patterns of symptoms, such as whether they come and go or remain or get worse. Having more refined definitions of different types of MS would greatly facilitate research studies, communications between people with MS and their healthcare providers, and treatment decisions. For these reasons, a recent effort to fine-tune descriptions of MS was undertaken

by the International Advisory Committee on Clinical Trials in MS. This committee is comprised of international leaders in MS research and clinical care and is jointly supported by the National MS Society and the European Committee for Treatment and Research in MS (ECTRIMS). For the full article, visit www.nationalmssociety. org/About-the-Society/ News/InternationalCommittee-Re-ExaminesDefinitions-of

Genzyme Announces: FDA Accepts Its Resubmitted Application for Lemtrada Genzyme, a Sanofi company, announced that the U.S. Food and Drug Administration had accepted for review the company’s resubmission of an application seeking approval of Lemtrada™ (alemtuzumab) as a treatment for relapsing MS in the United States.


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The company’s previous application was denied approval in December 2013. According to a company press release, additional analyses and information have been provided to the agency, and the FDA’s review is expected to take about six months.

Teams Report Success Enhancing Myelin Repair in Mice Using Stem Cells and Other Novel Approaches Two teams of researchers funded in part by the National MS Society report success in stimulating the repair of nerve-insulating myelin in mouse models of MS. Myelin is a major target of immune attacks in MS, and although these are early results and further work is needed, these findings show some promise for strategies to repair damage and restore function for people with multiple sclerosis. Achieving success in the Society’s priority area of nervous system repair would provide

life-changing advances for people with MS. For the full article, visit www.nationalmssociety. org/About-the-Society/ News/Teams-ReportSuccess-Enhancing-MyelinRepair-in-Mi

MS Trial Alert: Researchers Recruiting Women with Progressive or Relapsing MS for Study of Estriol to Improve Cognition Investigators in California, Colorado, New Mexico and Pennsylvania are recruiting 64 women with MS relapsing-remitting, secondary-progressive, or primary-progressive for a 12-month study in which the sex hormone estriol will be compared with inactive placebo for effects on cognitive function. Participants can remain on their prescribed MS medication throughout the study. Rhonda Voskuhl, MD (University of California at Los Angeles) is the principal

investigator of the trial. The study is funded by various private donors to the UCLA program. For the full article, visit www.nationalmssociety. org/About-the-Society/ News/MS-Trial-AlertResearchers-in-California,Colorado.

$10 million for MS research from Defense budget approved With support from MS activists, the House agreed to an amendment that would double MS research funding for Fiscal Year 2015 in the Congressionally Directed Medical Research Program (CDMRP). This amendment increased funding from $5 million to $10 million-the largest amount to date. n

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


08 Cover Story Continued

The Harris family faces MS Peanut lives in Dover, DE with her parents, older sister, Keisha, and two family pets – Brady, her dog and Socks, her cat. No one else in her family had a diagnosis of MS at the time she was diagnosed. However, two adult family members have since Khalidah Harris (Peanut), discovered that they diagnosed age 12 too have MS. The sudden prevalence of MS in their family prompted the creation of the Harris Team, which participates in Walk MS every year. The Harris’ are involved because they know that the money raised at Walk MS helps families deal with the many challenges that come with a diagnosis of MS. Bernadine Harris, Peanut’s mother, says the National MS Society’s commitment to using local funds to help local people is why she believes so strongly in the organization. “Few charities that raise money actually help people living in this state,” she says. Bernadine is thankful to have had the benefit of connecting with the National MS Society and receiving assistance at times when her daughter was struggling. Most recently, for example, the Delaware Chapter acquired an iPad to help Peanut complete writing assignments that would

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otherwise be impossible for her to manage due to her symptoms. Peanut also attended the regional Pediatric Camp in Maryland and is looking forward to going again in October. There she can interact with other young people living with MS, form friendships and, for a little while, leave her MS behind.

Making pediatric MS a priority Speeding diagnoses and improving treatment for children living with MS is a priority for the National MS Society. It’s why the Society convened an International Pediatric MS Study Group (2004) and established a nationwide network of six Pediatric MS Centers of Excellence (2006) to provide comprehensive evaluation and care to children and teens (up to age 18) with MS and related disorders. More recently, the Greater Delaware Valley Chapter board approved a grant worth nearly $600,000 to fund clinical fellowships at the Children’s Hospital of Philadelphia. These grants will provide hands-on experience to some of the best neurology students in the country, with the goal of encouraging them to make MS part of their careers as physicians and researchers. Although MS occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,000-10,000 children (up to 18 years old) in the United States have MS, and another 10,000-15,000 have experienced at least one symptom suggestive of MS.


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Diagnosing MS in children is more challenging than in adults due to other childhood disorders with similar symptoms and characteristics. Pediatricians may not be familiar with MS because they are not expecting to see it in children. Once diagnosed, almost all children are considered to have relapsing-remitting MS, with most symptoms of MS similar to those seen in adults. There are, however, symptoms experienced by children that are not typical in adults, such as seizures and mental status changes (lethargy). Children often experience more frequent relapses than adults with early MS and increasing evidence suggests a slower disease course in children with MS, but significant disability can accumulate at an earlier age compared to individuals with adult onset MS. Studies have shown that the U.S. Food and Drug Administration (FDA)-approved self-injectable disease-modifying therapies developed for adults are also safe and well tolerated in children. Large clinical trials are needed to assess treatment efficacy for the disease-modifying therapies in children, adolescents and teenagers. There are no current data available on safety or tolerability of the oral medications in the pediatric population.

Pediatric MS Support Psychosocial consequences of MS in children and adolescents may affect academic performance, family relations, and specific adolescent issues including self-image and relationships with peers. An evaluation by

09 a trained professional can help determine appropriate interventions, and resources are available to help you navigate the school system through the Pediatric MS Support Group. Details can be found by visiting NationalMSSociety.org or by calling 1-800488-5611. n

National Capital Chapter is organizing a family retreat for families affected by pediatric MS. This program will take place over Columbus Day Weekend (October 11-13, 2014) in Maryland. Families from PA, NJ and DE are also welcome. Those who are interested and have questions or would like to request an application can contact the National Capital Chapter at KidsandTeensDC@nmss.org or 202-375-5600.


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Making connections in tandem A tandem bicycle is built to connect cyclists, doubling their pedaling power. For tandem cyclist Dick Nenno, these connections represent so much more than sharing a bike. Each year, Dick connects with more than 1,000 cyclists at Bike MS: Bike to the Bay, a two-day cycling adventure through scenic southern Delaware. At this event, cyclists of various skill levels come together in support of a world free of MS. This year will mark Dick’s seventeenth Bike to the Bay ride. Dick’s connection to Bike MS traces back to 1982. That’s when he met Rob Collins, his friend, colleague, and cycling partner. Dick and Rob both live in Swarthmore, PA and work at Wilmington Trust Company. The two began riding home from work together and became fast friends. In 1995, Rob bought a tandem bicycle, and Dick suggested that they ride it together. Dick, who is blind, began collaborating with Rob to pedal and navigate. Rob rides in front as the “captain,” and Dick rides in back as the “stoker.” “We make sure to communicate when he’s starting to pedal, when we’re stopping, or when we’re turning,” he says.

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Dick Nenno (left) and Rob Collins (right) celebrate after the ride in Dewey Beach By connecting with a sighted rider, Dick could do more than he ever thought possible as a cyclist. The two enjoyed riding together so much that they decided to register for Bike to the Bay. Dick’s mother had MS, and he wanted to help support MS research, programs, and services. By registering for this ride, Dick and Rob connected with other cyclists dedicated to the fight to end MS. Now, Dick’s year revolves around Bike to the Bay. He and Rob begin training each spring, typically at the end of March or the beginning of April. They start out riding short distances and gradually add to their route. Dick and Rob aim to ride one day each week over the summer and usually meet that goal. “One thing that Rob says is nice about [riding together] is that he always has company when it’s rainy or windy,” Dick explains. In addition to connecting with Rob and other cyclists, Dick has strong ties to his family, friends, and local community. He has been happily married for 36 years, has three grown children, and works as the Senior Managing Director and Trust Counsel at Wilmington Trust Company. He enjoys swimming at his local pool and singing in his church choir.


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Dick also connects to his community by raising funds for local people living with MS. For twelve years, he has been the number one fundraiser for Bike to Bay, raising more than $218,000 in total. Dick attributes his fundraising success to letters he distributes before and after each Bike to the Bay ride. In these letters, he writes candidly about his Bike to the Bay experience and what it means to him. Dick describes Bike to the Bay as “lots of fun.” “I like to be active, [and] I like the cause,” he explains. After each Bike to the Bay ride, Dick celebrates his accomplishments by swimming in the ocean and dining with family and friends at a nearby restaurant. For those considering signing up for this year’s ride, Dick emphatically says: “Try it.” He cautions, though, that interested participants should take the time to train. Each year, Dick and Rob bike 75 miles to Seashore State Park, just south of Dewey Beach, DE; and 75 miles on the return trip. However, there are route options for cyclists of every level, ranging from 17 to 175 miles. All participants travel through Delaware’s coastal towns and enjoy a lively celebration – including music, food, and massages – at the end of each day. To register to ride or volunteer at Bike MS: Bike to the Bay (September 20 & 21) or Bike MS: City to Shore (September 27 & 28) visit BikeMS.org or call 1-800-548-4611. n

VOlunteer at bike ms THIS SEPTEMBER For volunteer opportunities in NJ and PA, Call 215-271-1500 or visit MSCYCLING.ORG. For volunteer opportunities in DE, Call 302-655-5610, ext. 2 or visit biketothebay.ORG.


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CHOOSE Your RIDE BIKE MS: BIKE TO THE BAY

PRESENTED BY NRG INDIAN RIVER GENERATING STATION AND DISCOVER BANK SEPTEMBER 20 & 21, 2014 FROM DOVER TO DEWEY BEACH, DE 17-, 30-, 75-, 100-, 150-, AND 175- MILE ROUTE OPTIONS REGISTER TO RIDE OR VOLUNTEER BY VISITING BIKETOTHEBAY.ORG OR BY CALLING 302-655-5610, EXT. 2

BIKE MS: CITY TO SHORE

PRESENTED BY TEVA SEPTEMBER 27 & 28, 2014 FROM CHERRY HILL TO OCEAN CITY, NJ 25-, 45-, 75-, 100-, 150-, AND 175- MILE ROUTE OPTIONS REGISTER TO RIDE OR VOLUNTEER BY VISITING MSCYCLING.ORG OR BY CALLING 1-800-445-BIKE

BIKE MS: BIKE TO THE BAY

BIKE MS: CITY TO SHORE

Ride along scenic rural and coastal Delaware, with 1,400 cyclists while you enjoy a fully supported, fun, and truly inspirational experience. Nicknamed “Buffet to the Bay,” you will have a chance to experience the great food offered at all of our rest stops - from the famous scrapple sandwiches and apple cider to the chicken skewers and Margaritaville! There are three different start locations, depending on the length of your ride, all ending just south of Dewey Beach at the Towers at Delaware Seashore State Park. This exciting finish offers a scenic oceanfront view, where you can celebrate your accomplishments with your fellow riders in the MS Team Village.

Named by Philadelphia Magazine as the “Best Charity Event in the Area,” the Bike MS: City to Shore Ride is considered one of the best cycling events on the east coast. Ride with 7,000 cyclists of all ages and cycling abilities for the challenge of your choice with several different route options. Enjoy flat terrain as you travel through the quaint towns and back roads of Southern New Jersey. Pedal through the blueberry fields of Hammonton, experience the serene beauty of the Pine Barrens and listen to the waves as you roll into familyfriendly Ocean City.


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1. Preakness at the Piazza 2. Women Against MS Luncheon 3. Preakness at the Piazza 4. Women Against MS Luncheon 5. Walk MS 6. MuckFest MS 7. Muckfest MS 8. Crankin’ For A cure

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The mask of MS by Michelle Wall

I was first introduced to MS when I met my soon-to-be mother-in-law, Jane Wall. She experienced a very rapid severe onset of MS back in the mid-80s. Unfortunately, there were not a lot of advancements in research and many current treatments were not available at that time. I cannot even imagine how hard it was for her family to witness the deterioration of her body caused by MS. She was no longer physically able to participate in many activities that she loved, however, she never lost her optimistic outlook and sunny disposition. She was a remarkable woman who was able to find joy in all circumstances. Sadly, Jane died from complications of MS in 2012. In 2011 a friend told me about an event called MSquerade hosted by the Delaware Chapter of the MS Society’s Emerging Leaders Council (ELC). I thought it sounded like a unique and fun way to raise funds and awareness about MS. My husband and I attended the event, and the evening had a dramatic impact on me. I was moved by a group of posters that featured people who struggle with MS wearing masquerade masks. They were referred to as the faces of MS. I was reminded that there are two kinds of people who struggle with MS: those who struggle in plain sight with visible symptoms and those who struggle in secret, behind the mask of MS. I left the event knowing

Michelle and Jason Wall At MSquerade that I wanted to become involved with the MS Society and future MSquerade events. I immediately joined the Emerging Leaders Council and have been a part of planning MSquerade for the last three years. MSquerade is not your typical fundraiser. I often tell people that MSquerade is like attending a really fun wedding. However, instead of buying a wedding a gift you are supporting a gift of hope for many who struggle with MS. I am proud to see this event be successful because the night is a celebration. It is a reminder to me of my mother-in-law’s outlook on life that despite an MS diagnosis you should still live your life to the fullest. Eat, drink and be merry! MSquerade is a tangible way to have a night outside the trappings of the disease. Together,


nationalmssociety.org | 1-800-FIGHT-MS

we celebrate with friends and family that advancements in treatments are being made and that a search for a cure is ongoing. MSquerade will be held on Friday, November 14, 2014, at the World Café Live at the Queen in Wilmington, DE. It is a Mardi Grasinspired masquerade event featuring live music, an extensive silent auction, a photo booth, face painting, heavy hors d’oeuvres, and complimentary drinks. Proceeds from the event will support programs and services that help the 1,550 Delawareans living with MS as well as funding for national research.

Adaptive Sailing Adventure The Delaware Chapter hosted an adaptive sailing adventure at the Inner Harbor in Baltimore, MD on Monday, May the 12th. Everyone had a chance to steer or ride in a sailboat on the waters of the harbor following a luncheon in the picnic pavilion. We all had a great time and hope to repeat this trip in years to come! Activities like the Adaptive Sailing Adventure are made possible through the Adventure Fund.

15 Together, we celebrate with friends and family that advancements in treatments are being made and that a search for a cure is ongoing. Hope you can join us. Get your mask on. www.msquerade.org. n

In addition to group activities such as this adaptive sailing trip, these funds are available on an individual basis and are intended to help people living with MS participate in activities that enrich life through an extraordinary experience. Any members in the East Region who want to experience a once-in-a-lifetime adventure or activity are eligible to apply. Awards are granted up to a maximum of $600. For more information or to apply, visit our website at www.msdelaware.org or call the Delaware chapter at 302-655-5610. The Arthur Stapler Memorial Adventure Fund honors the memory of Art Stapler, the vibrant, intense skydiver known as “the rebel,” who did so much after his diagnosis of MS. If you want to donate to the fund in his honor, please contact Debra Veenema at 302-655-7659 or debra.veenema@nmss.org. n


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Local students receive Society scholarships The National MS Society has awarded scholarships to 12 local students through its annual scholarship program. The program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent who does; or anybody living with MS who has net been to a post-secondary school. Scholarships range from $1,000 to $3,000 and typically cover one year. Information about scholarships for 2014-15 can be found on the National MS Society website, nationalMSsociety.org. Congratulations to this year’s outstanding scholarship recipients and best wishes as you pursue your academic dreams this fall! n

SCHOLARSHIP MANUAL

We all know the financial strain that an MS diagnosis can put on a family. With tuition costs and living expenses rising every year, it’s becoming harder for families to fund their child’s college education. These days, more and more families are turning to financial aid to help make the process a little easier to swallow. But that’s often not enough. That’s why we have created a scholarship manual. The information you’ll find in this 22-page guide will help you identify scholarships, avoid scams and navigate your way through the complex financial aid process. Available online only at nationalMSsociety.org/pae.


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Allison Bagshaw, Seaford, DE Sussex Technical Elementary Education, University of Delaware

Olivia Crass, Ocean View, DE Indian River High School Music Education, University of Delaware

Derek Hueske, Leesport, PA Schuylkill Valley High School Computer Science, Columbia University

Neena Oli, Dagsboro, DE Indian River High School Equine & Enviro. Sciences, Delaware Valley College

Alexander Payne, West Chester, PA Delaware Co. Christian School Biology, North Carolina State

Carin Prechtl, Wilmington, DE St. Marks High School Architecture, VA Polytechnic Institute & State College

Bryan Rodriguez, Philadelphia, PA The Haverford School International Relations/Pre-Law, University of Pennsylvania

Zoe Shute, Deptford, NJ Deptford High School Marketing and English, Fordham University

Jessical Stull, Lansdowne, PA (National scholarship) Upper Darby High School Neuroscience, University of Miami

Kieanna Smack, Laurel, DE Laurel Senior High School Early Education, Delaware Tech and Community College

Nyesha Smith, New Castle, DE (Renewal scholarship) Psychology, Morgan State University

Sean Taylor, Cherry Hill, NJ Cherry Hill High School East Accounting, The College of New Jersey


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MEAL DELIVERY Service in the works

in place to help eradicate these barriers.

In May 2014, the National MS Society partnered with Philabundance, a local hunger relief organization, to launch a Homebound Meal Delivery Initiative. Through a five-week pilot program, volunteers delivered free meals to local people living with MS.

Andrea Rosenthal and Jack Gordon pack out food AT Philabundance. To gauge the impact of this

Homebound people living with MS can face barriers to food access, such as financial difficulties and mobility issues. The Homebound Meal Delivery Initiative was put

The five-week pilot was a true collaboration. Philabundance donated the food, while the MS Society handled recruitment efforts and logistics coordination. Six volunteers delivered four meals per week to the homes of eighteen Philadelphia County residents.

initiative, Society staff are collecting feedback from pilot program participants. The Chapter hopes to continue their partnership with Philabundance and expand this program in the future. n

We want to thank everyone who participated in and volunteered at MuckFest MS Philly on May 31 and June 1. More than 7,000 brave souls gathered in Newtown Square, PA to take on our five mile mucky obstacle course. They ran, swam, jumped and sloshed through heaving pits of pure muck and raised over $550,000. These funds will support vital programs and services for people living with MS in our area and cutting-edge research into the cause, treatments and cure for MS. Thank you for making a difference.


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LOCAL CHILDREN participate IN MS READATHON

Top Fundraiser, Elli RunnerDraper raised $850 through Tutor Time Childcare & Learning Center

Readathon is an educational and fundraising program created by the National Multiple Sclerosis Society to encourage reading, promote community involvement, raise disability awareness, and aid in the fight against multiple sclerosis. Children are asked to read books at their own reading level for one month and obtain pledges for each book that they read from family and friends.

This year, seventeen schools participated in the MS Readathon and raised nearly $28,000. We also expect to generously receive at least $16,000 in grants from DuPont and the Laffey-McHugh Foundation. The Top Fundraising School was Mount Pleasant Elementary, whose students read a total of 2,904 books and 62,436 pages, while raising $6,000! We are pleased to announce that nine Readathon students raised over $500 and were invited to Readathon MVP Night at the Phillies game on Saturday, June 28th. We are so proud of all the students for their fundraising efforts this year! n

TO LEARN MORE ABOUT THE MS READATHON PROGRAM OR TO GET YOUR SCHOOL SIGNED UP FOR NEXT YEAR, PLEASE CONTACT: AINSLEY HERTRICH 302-655-5610, EXT. 86129 AINSLEY.HERTRICH@NMSS.ORG


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MS Service Day to Take place In The FALL If you are living with MS and need a helping hand, MS Service Day volunteers are here to help. The MS Service Day or Caring Hands, as it is known by the Delaware Chapter, will take place this Fall. We understand how people living with MS may be easily fatigued and unable to undertake routine maintenance projects, so we’ve helped organize volunteers to help families with this challenge. We welcome projects to help families upkeep the exterior of their home. Projects can include yard work, gutter cleaning, power-washing, painting, deck cleaning and sealing, handyman chores and small repairs. Volunteers are also needed to complete these home projects. Consider volunteering as an individual or recruiting your own team of volunteers from work, school, church or the neighborhood. Volunteers will work in teams and receive orientation and a celebratory meal at the end of the day. Participating in this event provides volunteers with a unique perspective of the day-to-day struggles of those living with MS as they work alongside these families. By the end of the project it will be evident to everyone involved what a difference a day really can make! To receive your volunteer

Day of service Volunteer helps Landscape A Yard or application packet or ask questions: Call 1-800-FIGHT-MS. Questions can be directed to Pat Thieringer at the Greater Delaware Valley Chapter at 215-271-1500 or pat.thieringer@nmss.org or to Carol Cave at the Delaware Chapter at 302-655-5610 or carolyn.cave@nmss.org. The Caring Hands program services all areas of Delaware, while the MS Day of Service at the Greater Delaware Valley Chapter is focusing on Lehigh and Northampton Counties this year. n

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


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MORE PROGRAMS Third Annual Girls Night Out Join women from across the state of Delaware for the third annual Girls Night Out to Fight MS event at The Point at Noble’s Pond located at 13 Noble’s Pond Crossing, Dover, DE 19904. The Casino inspired event will be Saturday, September 20, 2014 from 6:30pm9:30 pm. Girls Night Out, organized by Colleen Ostafy, Lifestyle Director at Noble’s Pond, will be fun-filled with heavy hors d’oeuvres from local restaurants and a cash martini bar, wine bar, and beer. Guests may enjoy an extensive silent auction featuring premier items and services from Delaware businesses as well as a beach getaway! Also, guests can enjoy a trendy fashion show, music, shopping, raffle, chair massages and much more! Tickets are $20 and may be purchased by calling 302-7365000 or messaging us on Facebook at www. facebook.com/GirlsNightOutToFightMS. Tickets are also available at the door. After last year’s huge turn-out, this is an event you don’t want to miss! n

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.

A Day at the Ballgame: Jul 20 and 26 Join us on July 20 at Purdue Stadium in Salisburg, MD for a a Shore Birds game or on July 26 at Frawley Stadium in Wilmington for a Blue Rocks game.

Carepartner Teleconference Series: Strengthening Family Resilience: Aug 5 | 7pm Listen to this call and learn about coping strategies to help individuals and families handle the challenges associated with daily care giving.

All About CAMs: The news on complementary and alternative medicine for MS: Aug 7 | 6pm Join us at Crowne Plaza Valley Forge for this program featuring Dr. Allen Bowling, one of the leading experts on alternative therapies for MS.

Carepartner Teleconference Series: How to Make Your Life Easier: Aug 19 | 7pm Join us for this call as we discuss the array of mobility aids, tools, technology, adaptive strategies, and environmental modifications available to help carepartners.

Young with MS at Brauhaus Schmitz: Aug 26 | 6pm If you’re living with MS and in your 20s or 30s, connect with people your age for an authentic German bierhall experience at this Philadelphia hot spot. n


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MS connection: SUMMER 2014

Living with ms

Choosing wisely By Katie Jennings

When it comes to doctors, I always follow instructions. When I’m sick, I take the medicine they give me. If I have a pain, I rely on them to tell me how to get rid of it. When I was pregnant, I didn’t even bother with prenatal classes. My entire plan was just to do whatever the doctors told me to do. But when it comes to multiple sclerosis, my usual modus operandi is letting me down. I’ve been very surprised about how much has been left up to me, particularly since the “me” in question is a fairly uninformed rookie when it comes to serious medical issues. What drugs do I want to take? Do I want to modify my diet? Is physical therapy the right choice for me? Do I want to take vitamins or supplements? There’s a big part of me that’s still waiting for the instructions. I want to be handed an MS manual that will tell me exactly what to do and promise me specific results. However, sadly, there’s no manual. I get to choose my own path, and my choices will have an impact on the quality of my life. It’s a lot of responsibility, and sometimes that can feel overwhelming. The bright side is that even with a disease that none of us would choose to live with, it’s kind of nice to have some measure of control. And that’s what choices represent. Choose to eat better to keep your body strong.

As a person living with MS, Katie Jennings faces many choices. Choose to try yoga to keep your balance steady. Choose to learn a language or do a crossword to keep your mind sharp. Choose to accept support. Choose to live well. We’re all at different stages of this journey, but within that framework, maybe all the choices are a blessing. Let’s make good ones! n Katie Jennings, diagnosed with MS in 2012, writes a blog at www.steadyshegoes.com. To connect with others with MS about the choices they’ve made in their own lives, visit www.MSconnection.org. Call an MS Navigator at 1-800-344-4867 for additional area support and resources.


nationalmssociety.org | 1-800-FIGHT-MS

Ask the Employment Expert Christina Forster is the employment services manager for Pennsylvania and Delaware.

Many times during the work day, I have burning pain in my fingers; it gets worse as it travels up my arms, neck, and face. I have tried breathing exercises and chair yoga but they no longer help. Any suggestions?

Symptom management is crucial to being successful on the job and having good work/life balance. It’s important to work with your doctor to determine any medications or therapies that may help treat the pain. Be honest with your doctor and explain as clearly as you can the severity of symptoms you are experiencing. She may suggest physical or occupational therapy, where you can learn exercises and stretches

23 to help alleviate the pain. Sometimes a pressure stocking, glove, or warm compress are prescribed to treat the pain. Accommodations on the job may be another option, such as a split keyboard, track ball (instead of a regular mouse), taking frequent breaks, having a flexible work schedule, reducing or eliminating physical exertion and workplace stress, implementing an ergonomic workstation design, and reducing repetitive tasks. Also, talk with your doctor about proper nutrition and self-care. Relaxation techniques, such as massages, breathing, meditation, visualization, humor, music, and acupuncture, may be helpful. Getting the sleep you need, managing your medications, keeping a positive attitude, and staying active can help with managing pain. Be sure to talk to your doctor before starting anything new. One person living with MS mentioned she worked with a personal trainer to help ease her pain and keep her muscles strong; another person stated that taking daily naps helped her with her pain. There are many resources available to help, so take advantage of them! (See the article “Managing Symptoms on the Job� on the next page for resources). n


24 EMPLOYMENT

Managing Symptoms on the Job By Christina L. Forster, MA, CRC

Multiple sclerosis is a complex and unpredictable disease causing varying effects on a person’s ability to work. Experiencing new symptoms might make you question whether you can continue working and, when those symptoms diminish, you might wonder why you were worried about work at all. People living with MS often continue working long after their diagnosis. Other individuals with MS decide to leave their jobs when they are first diagnosed or experience their first major exacerbation, often at the suggestion of a loved one or their doctor. This decision is often made too hastily and at a time when symptoms can cloud their judgment. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you make an informed decision about work and remain in the workforce longer. Because MS presents itself differently from person to person, day to day, and even hour to hour, it can be a challenge for some individuals to perform optimally at their jobs. That is

MS connection: SUMMER 2014

why it is critical to get to know yourself and your limits. Practical tips for helping with this include keeping a symptom journal or marking on your calendar each day how you felt. This gives you the ability to go back and notice if there are any patterns, possibly identify triggers and make adaptions to help you perform better. Symptoms of MS that may impact a person on the job can include fatigue, cognitive challenges, fine motor symptoms, vision problems, depression, balance issues, numbness and tingling, or heat sensitivity. Some general tips to help manage a variety of symptoms include knowing what is normal for you, learning how to adapt in different situations, controlling your environment to help conserve energy, rest and relaxation, exercising, keeping a positive attitude, and proper nutrition. Learning to manage your symptoms both in and out of work will help you be more successful on the job. Check in with your doctor on any suggestions and specific programs to meet your individual needs. Fatigue and cognitive problems, not physical disability, are the two most common symptoms that ultimately lead people with MS to leave the workforce. Fatigue is the most common symptom of MS occurring in about 90% of people. MS fatigue can greatly interfere with everyday activities including work. Fatigue can increase cognitive problems as well. It’s very important to learn ways to help manage your symptoms; in the workplace, this is done with accommodations. Learning to manage fatigue in the workplace is an ongoing process. Each person has to uncover


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nationalmssociety.org | 1-800-FIGHT-MS

strategies that help him or her. It’s a good idea to work with your doctor and possibly an occupational therapist to learn ways to manage fatigue. Some common tips include: ■■ prioritizing ■■ pacing

tasks

yourself

■■ planning

ahead

■■ scheduling

breaks and rest times

■■ delegating

tasks

■■ using

assistive technology

■■ evaluating

your workspace

To optimize your treatment, work with your doctors to determine how your medications can impact fatigue or other symptoms. Cognitive challenges can affect up to 60% of people with MS, and stress can have a negative impact on cognitive function. Cognitive challenges could include attention and concentration, short-term memory, information processing, executive function, decision making and ability to follow through on plans, perception, and verbal fluency. As with fatigue, there are some strategies that can help you adapt at work and perform better. Some tips include: ■■ being

more organized

■■ using

memory aids such as a PDA notebook or calendar

■■ reducing

stress

■■ a llowing

rest breaks

■■ minimizing ■■ taking

distractions

notes to help with memory

■■ asking

for written descriptions of tasks whenever possible

■■ a llowing

for a selfpaced workload

Again, it’s important to take care of yourself out of work as well by getting enough sleep, employing relaxation techniques, exercising, and eating healthy. Always talk with your doctor about exercise and nutrition plans. Make sure to discuss your medications and any possible side effects that may impact your cognition. There are many other symptoms individuals with MS may experience at work. For more information, we highly encourage you to utilize the National MS Society’s resources, including publications on specific symptoms, online videos on symptom management, and the You CAN! Series. You can access this information by calling 1-800-FIGHT-MS or visiting the National MS Society’s website. Additionally, the Job Accommodation Network (JAN) is an excellent resource that provides information about job accommodation strategies for employers and employees. This is a free service sponsored by the U.S. Department of Labor. For more information visit www.askjan.org or call 1-800-526-7234. n


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MS connection: SUMMER 2014

ADVOCACY

uPDATES State DELAWARE – General Assembly The Government Relations Committee was watching several pieces of legislation as the 147th General Assembly drew to a close on June 30th. There is always a flurry of activity on the last day of the legislative session, June 30th, when many bills are passed. Legislation that has been closely monitored by the Delaware Chapter is listed below. Check the State’s bill tracking feature at http://legis. delaware.gov/ for the latest developments. ■■ HB

191 related to absentee ballots

■■ HB

196 related to housing discrimination

■■ SB

185 related to employment discrimination

■■ HB

245 related to restroom access

■■ HB370

related to people first language

New Jersey and Pennsylvania – Disability forum held The Greater Delaware Valley Chapter cosponsored and helped organize a forum for all the candidates for PA governor to address disability issues. The forum, which attracted representatives of three of the campaigns, was held in front of a crowd of 200 April at Liberty Resources in Philadelphia. Other groups involved in the event included Disabled In Action of Pennsylvania, Pennsylvania’s Consumer Workforce Council, Delaware Valley Chapter of the National Multiple Sclerosis Society, United Cerebral Palsy of Philadelphia, Mental Health Association of Southeastern PA and Temple University’s Institute on Disabilities.

Federal WORLD MS DAY World MS Day was May 28th and the National MS Society launched a “Letter to the Editor” campaign in the weeks leading up to that date. The campaign drew attention to the need to ratify the Disability Treaty which is an international human rights treaty intended to protect the rights and dignity of persons with disabilities. n


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nationalmssociety.org | 1-800-FIGHT-MS

ADVOCACY

New PA/NJ Advocacy Manager Announced

behalf of people living with MS on a full time basis. “Once you start working with people affected by MS, it’s shocking how different the disease can be for each person,” she says. “Plus, with MS you never really know what’s going to happen next.” In addition to knowing the ins and outs of federal programs such as Medicare and Social Security, Brough is also well versed in the Affordable Care Act – in fact, she was tasked with training her colleagues in the constituent office on the salient points of the legislation.

Before joining the Society, Brough served as Congressman Patrick Meehan’s District Representative and Office Manager. Her many duties for the congressman included casework with constituents who needed help with federal agencies, many of whom live with MS.

“The MS Society is extremely well-respected and is truly on the cutting edge,” Brough notes. “It’s an organization that leads the way for other non-profits in how it fundraises and conducts advocacy on behalf of its members.” n

“People would turn to us when they were having problems with Medicare coverage or were denied Social Security Disability Insurance,” Brough explains. “I was really surprised at how much we could help people by guiding them through the system and advocating on their behalf.” Now Brough is looking forward to bringing her expertise to the MS Society so she can work on

join the discussion online

The National MS Society is pleased to announce that Mara Brough has been selected as the new Senior Manager of Advocacy for Pennsylvania and New Jersey.

A resident of Springfield, PA, Brough is a graduate of Kutztown University who is currently working on her master’s degree in public administration at West Chester University. Brough explains that she chose to study public administration because she wanted to help people – something she is very excited to do at the National MS Society.

PA:

msactivepa.wordpress.com

facebook.com/MSPACAN

@MScanPA

NJ:

msactivenj.wordpress.com

facebook.com/MSNJCAN

@NMSSNJCAN


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MS connection: SUMMER 2014

research

Impacting MS through exercise by Brendan Waldoch

As he tells it, Robert Motl, PhD, didn’t set out to study multiple sclerosis. Dr. Motl, who is currently associate professor at the University of Illinois at Urbana-Champaign in the Department of K inesiolog y and Community Health, began his graduate studies with a focus on high-end exercise physiology, working almost exclusively with elite athletes. But after studying the effects of exercise on the central nervous system, he found a connection between his studies and MS research. “We applied for a grant from the National MS Society to study the effect of single sessions of exercise on spasticity and spinal reflexes in people living with MS. We were awarded the funds, and we haven’t looked back.” The results of the study were published in Neuroscience Letters 406 (2006) 289-292. “Only a handful of people were doing research on exercise and MS,” Dr. Motl says. “And the people who came into our lab to participate thought it was the greatest thing ever. With these two things in mind, it was an easy decision to make MS the focus of my research.” His commitment led to the establishment of the Exercise Neuroscience Research

PhD student Rachel Klaren assists an ENRL study participant. Laboratory (ENRL) at the university. At any given time, anywhere from a handful to a dozen research projects are taking place at ENRL. Over the past two years, ENRL was awarded four year-long pilot research grants from the Illinois Lottery Research Fund, which uses proceeds from a scratch-off ticket to fund MS research statewide. One such project is a home-based exercise study led by Lara Pilutti, PhD, assistant professor of Kinesiology and Community Health at the university, which looks at how strength, aerobic fitness and cardiovascular function can be affected by exercise training. “Participants come into the lab, they learn the exercises, and we teach them a few strategies to maintain their routine and adapt it to their lifestyles,” explains Dr. Pilutti. One participant, David Oost of Bloomington, Ill., has been part of at least six published studies at ENRL. “Three years ago, I walked with a cane and now I don’t,” he says. “My


nationalmssociety.org | 1-800-FIGHT-MS

ability to walk has improved greatly, my endurance has increased, and my desire to continue working out has been ignited. Even the cognitive tasks that the tests require have become easier, less frustrating, and fun.”

A reciprocal relationship Oost credits a large part of his improvement to the personal attention given to every study participant. He notes that the graduate students work very closely with him throughout the projects. In return, he is glad to help them advance their education, especially considering that it will most likely lead to more MS research. “It’s a no-brainer,” Oost says. “The tests help you fight against disease progression, you get to help graduate students earn their PhD so they can continue their research, you gain confidence in yourself, and most importantly, you are taking part in finding a solution. That’s a big deal.” “Where I’m from, there’s a high prevalence of MS,” says post-doctorate researcher Yvonne Learmonth, a native of Scotland with a background in physical therapy. “I know that good rehabilitation and exercise can have positive effects, but I want to expand this knowledge and benefit everyone that I can.” First-year PhD student Dominique Hopkins, a native of Chicago, chose to focus on specific populations of people living with MS. She began work with the ENRL team as an undergraduate, and continued on as a graduate student.

29 “For a long time, MS was seen as a disease mainly in Caucasian women, and treatments were largely developed for this demographic,” says Hopkins. “But recent literature has shown that African Americans often experience a more severe disease course. I want to know about the differences in their experience, and how can we tailor interventions to that population.” The goal — to slow, stop, and reverse the lifealtering effects of MS — remains ongoing, with collaborative efforts and advances in research and treatments now better than ever before, explains Dr. Motl. “To me, if there’s ever been a good time to be diagnosed with MS, probably right now is the best time,” he says. “I think most of our disease-modifying therapies and the scientific information on the benefits of exercise training and how that can be integrated into managing MS and improving function are being optimized.” For more information about the benefits of exercise or MS research studies in your area, call the Society at 1-800-344-4867. n Brendan Waldoch is an Americorp VISTA volunteer for the Society. Originally published in the Greater Illinois Chapter’s MSConnection newsletter.


30

Face of MS: LuzSelenia Loeb

Philadelphia resident LuzSelenia Loeb is a common feature of most local National MS Society events where she donates her outstanding skills as a volunteer photographer. Her son Bryan (see page 17) is a 2014 MS Scholarship recipient and she and 60 family members raised more than $2,500 at Walk MS. What were your first symptoms of MS?

In February of 2013 I woke up and could only see half of the words on my cell phone. I thought I needed reading glasses, but when I went to the optician she said it was something more serious and sent me to a specialist. My vision deteriorated with a bilateral field cut in both eyes leaving me with a tiny sliver of sight. The field cut in my vision was due to a lesion near my optic nerve. I was 99% blind for almost two months. These

MS connection: SUMMER 2014

were the most difficult months of my life, as I had to rely on everyone for absolutely everything which was extremely difficult for me to do as I have always been self-sufficient and am so active, especially in raising my three children.

How is MS affecting you right now? Thankfully, my sight came back, but other symptoms persist, such as fatigue, headaches, and limb numbness from time to time. I’m trying different medicines, eating a more healthy diet, and adapting to life so that I can be as active and involved as I have always been. I do have limitations, but as long as I don’t spread myself too thinly and take notice of the signs of my body asking to slow down, I’m okay. I just love what I do and love living life, so sometimes it’s hard to slow the pace. This illness has simply made me more aware of how much I have to be thankful for and how much each day is a true blessing!

Did you know much about the disease before you were diagnosed? Yes, in fact I had volunteered my photography services for National MS Society before I was diagnosed in support of my brother who was diagnosed with MS two years before me. Although I was aware of the disease, I did not really look into it in depth, until it hit home, and quite honestly, all the information was very overwhelming in the beginning, and sometimes still is. There are so many things to take into consideration from the new advances and medicines, to the types of diets, supports, and


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nationalmssociety.org | 1-800-FIGHT-MS

ways to manage daily life. Volunteering helps me to feel like I’m making a difference.

How did your children react to your MS diagnosis? I was not aware of the true impact of my diagnosis, as I was undergoing so much myself with having lost my vision, until I read the college essay written by my son, Bryan, last fall in which he detailed down to the minute of my diagnosis and the process we all went through from his perspective, for which he has won a few scholarships. This year when more lesions were found in my brain, my middle child, Joshua, broke down in tears and wouldn’t stop hugging me. My youngest is 10 and I don’t think she truly understands the big picture, but when I am ill she is the one who will check on me, cook ©2014 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

for me, and make sure I’m okay. They are all supportive when I’m not feeling well, but they are also kids, and living their lives, which is what I want them to do.

Did your diagnosis change the way you view photography? Yes, my being blind for a couple months changed everything for me. It was a reality check on how much I have to be thankful for and am blessed with. Photography is a passion of mine and when I lost my sight, it was as if I had lost the ability to breathe. I have an entirely new outlook and appreciation for the smallest things and feel so blessed for all I had once taken for granted, such as the simple ability to walk down the street or even type a letter without assistance. n

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.


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

GREATER DELAWARE VALLEY CHAPTER

DELAWARE CHAPTER

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

Chair: Marianne Jackson Vice Chairs: Valli Baldassano, Roger Dennis President: Tami Caesar

Chair: Maria McCabe Vice Chair: Matt Lenzini Interim President: Craig Robertson

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MSConnection Newsletter - Summer 2014