MSCONNECTION NEWSLETTERPENNSYLVANIA & SOUTH JERSEY · RE ING! THE DELAWARE OFFICE WILL BE...

2016 ISSUE 1 DELAWARE, SOUTHEASTERN

PENNSYLVANIA & SOUTH JERSEY

MSCONNECTION NEWSLETTER

INSIDE THIS ISSUE

12FROM CANADA TO KEY WEST – A FOUR MONTH RUN TO END MS

16NEW DIRECTIONS IN DIET AND MS

08LOCAL WALK FUNDRAISER SPOTLIGHT

14ANNUAL MEETING HONOREES

26FACE OF MS: ROBIN DORTON

02 MS CONNECTION: 2016 ISSUE 1

©2016 National Multiple Sclerosis Society, Greater Delaware Valley Chapter

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions.

The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

WE’RE

MOVING!THE DELAWARE OFFICE WILL BE RELOCATING TO NEWARK, DELAWARE AS OF FEBRUARY 1, 2016.

THE NEW OFFICE WILL BE ON THE DART BUS ROUTE AND MORE ACCESSIBLE VIA PUBLIC TRANSPORTATION! PHONE AND FAX NUMBERS WILL REMAIN THE SAME.

200 CONTINENTAL DRIVE, SUITE 115 NEWARK, DE 19713

PRESIDENT SEARCH UPDATE: As was reported in the last issue, Tami Caesar, the former president of the Greater Delaware Valley Chapter, is the Society’s new Chief Financial Officer. The search for a new president is near completion and the successful candidate will be named soon. In the meantime, John Scott, the Society’s Chief Field Services Officer, is serving as the interim president of the chapter.

NEWARK OFFICE (OPENS FEBRUARY 1)

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

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

03NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

UPCOMING FUNDRAISING EVENTSParticipate, 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.

WALK MS20 LOCATIONS THROUGHOUT DELAWARE, SOUTHEASTERN PENNSYLVANIA, AND SOUTH JERSEY • APRIL THROUGH JUNE

ZUMBATHON FOR MSPHILADELPHIA, PA • MAY 1

PREAKNESS AT THE PIAZZAPHILADELPHIA, PA • MAY 21

WOMEN AGAINST MS (WAMS) LUNCHEONPHILADELPHIA, PA • MAY 26

WE ALL DO IT: MULTITASKING. DREXEL UNIVERSITY IS LOOKING FOR PEOPLE TO

PARTICIPATE IN A RESEARCH STUDY EXAMINING INDIVIDUALS WITH MULTIPLE SCLEROSIS AND HOW THEIR ABILITY TO MULTITASK IS RELATED TO EMPLOYMENT STATUS. DREXEL IS RECRUITING BOTH INDIVIDUALS WITH AND WITHOUT MULTIPLE SCLEROSIS TO TAKE PART IN THIS STUDY. PARTICIPANTS WILL BE ASKED TO COMPLETE BRIEF PAPER AND PENCIL TASKS, DISCUSS THEIR CURRENT OR PAST EXPERIENCES AT WORK, AND ENGAGE IN A REAL-WORLD MULTITASKING TASK. THE STUDY WILL BE SPLIT INTO TWO SESSIONS LASTING APPROXIMATELY 2 HOURS. IF YOU ARE BETWEEN THE AGES OF 18-60 AND WANT TO TAKE PART IN THIS RESEARCH STUDY, PLEASE CALL OR EMAIL DR. MARIA SCHULTHEIS AT 215-895-6105 OR [email protected]. PARTICIPANTS WILL BE COMPENSATED FOR THEIR TIME WITH $60.


UPCOMING PROGRAMSCall 1-800-FIGHT-MS or visit calendarMS.org for more information or to register for any of these upcoming programs for people living with MS.

NAVIGATING CAREER CHANGE FEBRUARY 9 • 8:00 - 9:15 PMTELELEARNING CALLWorking with MS is possible, but can be challenging at times. What do you do when you can no longer do your job? What do you do if working in your field is no longer an option? How do you know when it’s time to make a change? Listen to career coaches discuss steps you can take to effectively navigate career transition periods. Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot.

MANAGING YOUR MS SYMPTOMS WITH TECHNOLOGY FEBRUARY 23 • 8:00 - 9:15 PMTELELEARNING CALLAn Assistive Technology Practitioner will share how technology can assist in the management of certain MS symptoms that may become barriers to productivity. Learn about a variety of useful tools and devices to help make work more accessible. Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot.

COUPLES RETREATMOUNT LAUREL, NJ • MARCH 5-6 WAYNE, PA • MARCH 12-13 REHOBOTH BEACH, DE • MARCH 19-20Join us in March for a couples retreat! A mental health professional will be on site to discuss relationship issues, coping strategies and caregiving issues. There will be group discussions and a modern version of The Newlywed Game. The cost to attend is $50 per couple. Dinner and breakfast will be provided.

YOUR WHOLE HEALTH, YOUR WHOLE TEAM: MANAGING YOUR COMPLEX MS SYMPTOMS MARCH 8 • 8:00 - 9:15 PMTELELEARNING CALLJoin an interactive, problem-solving conversation with a physician, psychologist, and physical therapist about how you and your support partner can make treatment decisions that work for you. Visit www.n a t ion a l MS s o c ie t y.or g /t e l e l e a r n i n g or call 1-800-344-4867 to reserve your spot.

THE COMPLETE GUIDE TO SOCIAL SECURITY DISABILITY MARCH 15 • 8:00 - 9:15 PMTELELEARNING CALLLearn what it takes to get approved for Social Security disability benefits from a social security attorney. Also, hear about the impact work might have on your


disability benefits once approved from a Certified Benefits Counselor. Visit www.n a t ion a l MS s o c ie t y.or g /t e l e l e a r n i n g or call 1-800-344-4867 to reserve your spot.

HOME BASED EMPLOYMENT: WHAT EMPLOYERS WANT MARCH 29 • 8:00 - 9:15 PMTELELEARNING CALLLearn from home based employers about what they look for when hiring people to work from home. Visit www.n a t ion a l MS s o c ie t y.or g /t e l e l e a r n i n g or call 1-800-344-4867 to reserve your spot.

PROMOTING WELLNESS FOR PEOPLE LIVING WITH MULTIPLE SCLEROSIS LEHIGH VALLEY HOSPITAL – CEDAR CREST APRIL 9 • 8 AM - 11:30 AMAt this annual symposium, speakers will address wellness, rehabilitation, exercise programs, guidance (psychological aspect), pastoral care, nutrition, and more. For more information or to register, call 610-402-CARE.

MULTIPLE SCLEROSIS EDUCATION PROGRAMLEHIGH VALLEY, PA • APRIL 2016 NEWARK, DE • APRIL 2016 PHILADELPHIA, PA • APRIL 2016In support of our mission, the National MS Society provides access to accurate, current, and comprehensive information to people living with MS and those who care about them.

Details of this program are still being finalized. Please check calendarMS.org in the next few weeks for more information.

AFRICAN AMERICAN CONFERENCE PHILADELPHIA, PA AREA • SPRING 2016The myth that African Americans do not get MS is just that – a myth. African Americans do get MS. In fact, studies suggest that MS can be especially active in African Americans.

Details of this program are still being finalized. Please check calendarMS.org next month for more information. n

IN THE STATE OF DELAWARE THERE ARE SEVERAL TAX EXEMPTIONS AND CREDITS AVAILABLE TO THOSE WHO HAVE A DISABILITY AND/OR ARE ELDERLY. PROGRAMS VARY BY COUNTY, BUT YOU MIGHT QUALIFY FOR A TAX CREDIT OR EXEMPTION ON YOUR PROPERTY TAX, SCHOOL TAX AND SEWER BILLS. CONTACT YOUR COUNTY GOVERNMENT FOR MORE INFORMATION AND TO APPLY.

NEW CASTLE COUNTY (302) 395-5555 KENT COUNTY (302) 744-2341

SUSSEX COUNTY (302) 855-7700


NEWS BRIEFSDIETARY OMEGA-3 FATTY ACIDS LINKED TO LOWER RISK OF HAVING A FIRST CLINICAL DIAGNOSIS OF CENTRAL NERVOUS SYSTEM DEMYELINATIONAn ongoing study on MS risk factors in Australia found that eating foods high in omega-3 fatty acids, especially from fish but not from plants, was associated with a decreased risk of developing a first clinical diagnosis of central nervous system demyelination (an episode that indicates a high risk of MS). Intake of other types of dietary fat or fat quantity was not associated with this risk. This team is continuing to follow the group to determine if there is a similar effect on the course of MS.

SUN EXPOSURE DURING TEENAGE YEARS MAY AFFECT MS DEVELOPMENTDanish researchers report that people with MS who spent time in the sun every day during the summer as teens developed MS later than those who did not. The investigators ruled out other possible genetic and lifestyle factors. This study lends more evidence to the role of vitamin D in MS development; the National MS Society is funding a clinical trial to determine whether vitamin D supplements can slow MS activity in people who already have the disease.

MOUSE STUDY SUGGESTS DIET AND GUT BACTERIA WORK TOGETHER TO REGULATE IMMUNE RESPONSESA team from Germany reports that short-chain fatty acids promote the development of immune cells that can regulate the attack on the brain and spinal cord in an MS-like

disease in mice, but only in the presence of gut bacteria. These findings lend evidence to the potential importance of diet in MS and opens new possibilities for developing diet-based treatments to help manage MS.

POSITIVE PHASE III CLINICAL TRIAL RESULTS OF OCRELIZUMAB IN PRIMARY PROGRESSIVE MSThe study, known as ORATORIO, involved 732 people with primary progressive MS. Compared to placebo, ocrelizumab significantly reduced the risk of progression of clinical disability by 24%, and it also reduced the time required to walk 25 feet by 29%, decreased the volume of brain lesions by 3.4%, and reduced the rate of whole brain volume loss by 17.5% over 120 weeks. This is the first large-scale clinical trial to show positive results in people with primary progressive MS. Genentech, a member of the Roche Group, supported the trial. In a press release the company stated that it plans to seek marketing approval from the FDA in 2016. n


RESEARCH INVESTMENTNATIONAL MS SOCIETY INVESTS OVER $21 MILLION IN NEW RESEARCH — ADVANCES 2015 RESEARCH INVESTMENT OF OVER $53MThe National Multiple Sclerosis Society has committed over $21 million to support an expected 78 new MS research projects as part of a comprehensive research strategy aimed at stopping MS, restoring function that has been lost, and ending the disease forever. This financial commitment is the latest in the Society’s relentless research efforts to move us closer to a world free of MS, and part of a projected investment of over $53 million in 2015 alone to support more than 380 new and ongoing studies around the world. The Society pursues all promising paths, while focusing on priority areas including progressive MS, nervous system repair, gene/environmental risk factors and wellness and lifestyle.

“These new grants are part of a comprehensive strategy to accelerate research that will propel the knowledge to end MS and identify everyday solutions that change the lives of people with MS,” says Cynthia Zagieboylo, president and CEO of the National MS Society.Just a few of the new cutting-edge research projects include a study at Baylor College of Medicine investigating a protein that may play a role in myelin repair and replacement of lost nerve cells, two events that may improve progressive MS; a University of Glasgow study looking at whether adult stem cells from the nose hold promise for nervous system tissue repair; and an exploration at Harvard’s Brigham and Women’s Hospital asking whether specific brain circuits are involved in the profound fatigue experienced by people with MS. Three new commercial partnerships are propelling the development of treatments targeting progressive MS.To find the best research with the most promise, the National MS Society relies on more than 130 world-class scientists who volunteer their time to carefully evaluate hundreds

of proposals every year. This rigorous evaluation process assures that Society funds fuel research that delivers results in the shortest time possible. There are FDA-approved therapies that can impact the underlying disease course in people with the more common forms of MS. However, none of these can stop progression or reverse the damage to restore function. National MS Society-funded research paved the way for a broad spectrum of existing therapies, none of which existed just several decades ago, and continues to be a driving force of MS research to move closer to a world free of MS. n

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


LOCAL WALK FUNDRAISER SPOTLIGHTMEL’S SUPPORT SQUADCathie Rubbo, team captain of Mel’s Support Squad, is the driving force behind some of the more creative Walk MS fundraisers.

“I enjoy coming up with activities and new ways to keep people interested in the cause,” says Cathie, who has known Melissa, aka Mel, since high school.

The team was formed after Melissa’s diagnosis of MS in 2010. Soon after, the MonSter BaSh was formed. It’s an annual fundraiser and costume party at a historic ballroom in Pottstown, PA. There’s a live band, a photo booth, plenty of dancing, a raffle and a 50-50.

A night like this wouldn’t happen without the local community. Cathie says, “It’s very heartwarming to find the local people and businesses that are so willing to support the cause.”

Mel’s Support Squad also raises money by selling Jell-O shots. “The Jell-O Shot Night is our most creative one,” says Cathie.

A local bar allows them to bring in homemade Jell-O shots, which they sell and donate the money they raise to the MS Society.

“There’s a lot of research that’s gone into which Jell-O shots work and which don’t,” says Cathie. “The regulars at the bar love it!”

She admits they go a little wild with it. The first time, they had 48 different flavors. Now they’ve narrowed it down to 15, with creative names like, “The Parrot Head,” “The Crazy Redhead,” and “The Cherry Bomb” – complete with a cherry in the middle.

Over the years, they’ve held other events, like a bake sale, a scrapbooking event and a mini golf tournament; they even sold a cookbook with recipes from all of their supporters.

When asking for donations, Cathie admits, “You get a lot of no’s. But you get a lot of yeses too.” And those yeses make all the difference.

“YOU GET A LOT OF NO’S. BUT YOU GET A LOT OF YESES TOO.” AND THOSE YESES MAKE ALL THE DIFFERENCE.

CONTINUED ON PAGE 11

MEL’S SUPPORT SQUAD’S JELL-O SHOT NIGHT RAISES FUNDS FOR WALK MS


THANK YOU TO OUR PREMIER NATIONAL SPONSOR PRESENTED LOCALLY BY THANK YOU TO OUR LOCAL SPONSOR

REGISTER TODAY! WALKMS.ORG | 1-800-344-4867

EAST GOSHEN PARK WEST CHESTER, PA


NOTE: In order for your registration to be processed, a waiver needs to be signed. A Walk MS coordinator will follow up with you upon receipt of this form.

PARTICIPANT INFORMATIONFirst ______________________________ MI Last ____________________________________

Address _________________________________ City ________________ State Zip ______

Email _______________________________________________________________________________

Phone __________________ Cell _____________________ Birthdate / /

m I have MS m Relative with MS m Friend/coworker with MS m Other

How many years have you participated in Walk MS (not including this year)? ________________

T-Shirt Size m S m M m L m XL m 2XL m 3XL

EVENT INFORMATIONI’m walking at (event location) __________________________________________________________

Personal fundraising goal (average goal is $180) __________________________________________

m Individual Participant m Team m I would like more information on forming a teamTEAM INFORMATION Team Name _______________________ Team Captain Name ___________________________

Name of company/school ____________________________________________________________

Team type m Friends/Family m Corporate

Register additional family members in your household by providing their name(s) and email address(es) ________________________________________________________________________________________________________________________________________________________

PAYMENT INFORMATION Donation Amount: $

I will pay my pledge via: please choose one form of payment

m Cash m Personal Check Payable to National MS Society

m Credit Card | Choose One: m Visa m MasterCard m Discover m AMEX

Account Number ______________________________________________________________________

Exp. Date / / Signature _________________________________________________

REGISTRATION FORMSEND COMPLETED FORMS TO:

Fax: 215-271-6122 | Mail: National MS Society, 30 S. 17th Street, Suite 800, Philadelphia, PA 19103


COREY’S CREWOn Corey Guntz’s 40th birthday, he was in for a big surprise. Clara, his daughter, now 14, organized a birthday party and fundraiser for their Walk MS team, Corey’s Crew. Guests played games and they sold a large number of raffle tickets.

One year, they had an event called “Wine-ing for a Cure.”

“Everybody bought wine glasses, and we taught them how to paint flowers on the inside of them to make them look neat,” Clara says.

The Guntz family has been donating to the MS Society for the last nine years, but has gotten much more involved over the last five years. That has a lot to do with Clara.

“We wanted to do more to help people who have MS, because my dad has MS,” Clara says. “So we started having all these fundraisers.”

Clara is the driving force behind their recent fundraising successes. In order to get people to come to events, she sends emails to pretty much everyone she and her parents know. She also gives postcards and flyers to her teachers and all her friends at school. Clara even helps design the materials.

“I’m so proud of Clara because this past year, for our Chicken BBQ and family bingo, Clara had to do 99% of the work,” says Corrine, Clara’s mom. “I’m just really proud. I’ve helped her over the years to get started and she’s just really run with it.”

Corey, who is diagnosed with multiple sclerosis, adds that they’ve also increased their fundraising “because the MS Society has done so much for me.” He adds, “It’s definitely a worthy cause. So much of the money that gets raised goes to the people.”

Each year, their fundraising culminates at Walk MS. They look forward to it every year.

“My favorite part about the actual Walk is how we get to meet so many interesting people and we get to form all these connections, and these really cool stories we get to hear from people,” Clara says. “It’s pretty neat.”

TEAM MICKEYJude Fanning and Team Mickey raise most of their money through one event. It’s their take on a beef and beer, complete with guest bartenders, food and drink specials, an auction, and to top it all off, a flip cup tournament.

“We’re building ourselves up and we constantly talk about if there’s anything else we can do,” says Jude, whose mom lives with MS.

The event now raises over $10,000 every year.n

TOP: CLARA AND HER DAD, COREY GUNTZ BOTTOM: COREY’S CREW


FROM CANADA TO KEY WEST – A FOUR MONTH RUN TO END MSSnakes, frogs, flooding – Stephen Moyer has seen it all on his 2,200 mile run from Canada to Key West. So why did Stephen, a high school teacher living in Bucks County, decide to undertake such a daring journey?

“I’ve always wanted to do one of those epic types of runs,” Stephen said, when we spoke with him in November.

And when his wife, Laurie, was diagnosed with multiple sclerosis in 2013, he found his reason.

“Instead of running a 5K for MS,” he thought. “Why don’t I run a ‘Forrest Gump’ type run for MS?”

He floated the idea to his wife, and “she said, ‘you’re nuts.’”

But he couldn’t let it go. So when the application for a sabbatical was due in the fall of 2014, he ran it by his wife one more time and they decided he should apply. Typically, Stephen said, an application for sabbatical takes three or four years to be approved. But two months later, he got a letter giving him the go ahead.

“The timing was not at all the way we hoped,” Stephen said. “My daughter’s in law school. I coach

track and field and cross country. I had all these things on my plate.”

Despite the challenges, Stephen knew that this was his chance. So he started working out all the logistics. And more importantly, he began preparing his wife for the possibility of not seeing him for four months.

“And that’s a big deal,” he said. “She and I have been married for 25 years and we’ve never been apart for more than two or three days.”

When we spoke in November, Stephen was sitting at a gas station in Florida, and his feet were beginning to feel the wear and tear from the road.

“I’m right around 2,000 miles now,” he said. “The toughest challenge is keeping my feet healthy enough that I can continue.”

There are other challenges as well. A lot of bridges and tunnels don’t allow pedestrians, so he has been forced off course. He recalled one road in Virginia, where on one side there was a sheer rock face, and on the other, a cliff. “Either way,” he said, “trucks are whizzing by.”

Even though it’s been hard, what keeps him going is his wife, Laurie, and everyone else living with MS. One of the highlights of the trip was his stop in his hometown. He took the day off, it was a Saturday, and spent it with his wife. They were only supposed to spend that day together, but he had something else up his sleeve.

EVEN THOUGH IT’S BEEN HARD, WHAT KEEPS HIM GOING IS HIS WIFE, LAURIE, AND EVERYONE ELSE LIVING WITH MS.


“I found out my wife had tickets to the Eagles game the next day,” he recalled.

So he secured a ticket without his wife knowing. The next day, he said goodbye to Laurie, and ran to his daughter’s apartment in West Philadelphia. When he got to the game, he found the section his wife was sitting in and explained his situation to the security guard. When he got through, Stephen, being a bit of a prankster, bought a bag of peanuts and pretended to be a salesman. “Peanuts here, peanuts here,” he yelled out, as he walked down to where Laurie was sitting. When she looked up, there were a lot of tears, hugging, and a few more hours to spend with his wife before hitting the road again.

At the gas station in Florida, Stephen knew that the end of his run was near. His plan was to reach mile marker zero in Key West, Florida, the day before Thanksgiving. His entire family was flying down to meet him to celebrate. The following week, Stephen would be back in Newtown, teaching high school.

“Not a lot of rest for the weary,” he laughed.

UPDATE: The day before Thanksgiving, Stephen was greeted at mile marker zero by people from all over the world asking to be in pictures with him. In a blog post, Stephen writes, “Although we have met our target fundraising goal please keep the donations coming. If you haven’t made a donation it’s not too late to help ‘finish MS’….and thanks again to my family, friends, the George School community, and especially my fantastic wife Laurie.”

You can see Stephen’s journey at www.canadatokeywestcoastalrun.org. He is still accepting donations for his Finish MS campaign. So far, he has raised $5,600 for the National MS Society. n


ANNUAL MEETING HONOREESDISTINGUISHED VOLUNTEER AWARDWALTER “SPIKE” CLARK JR.BARBARA CLARKWALTER CLARK

The Clarks have been incredible allies to the National MS Society. They help raise money through a few different events, such as the MDMS Golf Outing, which has raised more than $90,000. They’ve participated in MuckFest MS since the event began 6 years ago, and they have walked and fundraised at Walk MS for the last 7 years. During MS Awareness Week, they host a table at a local restaurant, collecting donations and promoting MS awareness. They are the true embodiment of fundraisers and activists.

CORPORATE CHAMPION AWARDPETPLANP e t P l a n is a top M u c k F e s t MS sponsor — but they are much more than that. In the last two years, P e t P l a n e m p l o y e e s have raised almost $40,000, and PetPlan themselves have given almost that much in sponsorships. They do fundraising challenges for their employees and try and encourage 100 percent participation. Moreover they are committed to improving the quality of life for those living with MS, particularly through the use of service dogs. They are now helping to fund a scholarship program, in partnership with Canine Partners for Life, to help those living with MS obtain service dogs.

HEALTHCARE PROFESSIONAL AWARDDR. JASON SILVERSTEENAfter receiving his medical degree, Dr. Silversteen completed a multiple sclerosis fellowship at the University of Texas Southwestern. Currently at Christiana Care in Newark, Delaware, Dr. Silversteen is actively

LEFT TO RIGHT: WALTER “SPIKE” CLARK JR., BARBARA CLARK, JOHN SCOTT, AND WALTER CLARK

HEATHER TUCK OF PETPLAN AND MEGAN DIPANNI OF THE NATIONAL MS SOCIETY


involved in the education of medical students and residents and routinely lectures to physicians and the local MS community. He is involved in multiple clinical trials evaluating new and existing therapies for MS. Dr. Silversteen is co-chair of the Greater Delaware Valley Chapter’s healthcare advisory committee and was granted Partner in MS Care status in 2013. n

READER SATISFACTION SURVEY RESULTSThank you to everyone who submitted reader satisfaction surveys. Your feedback is important and we appreciate your participation. And congratulations to Maureen from Dover for being randomly selected to win the Kohl’s gift card!

GADGET CORNER

DRAGON SPEECH RECOGNITION SOFTWAREFor people dealing with the symptoms of MS, typing may be a difficult task. Dragon Speech Recognition Software might be able to help. Dragon can transcribe up to 160 words a minute. Just speak and the words appear on the computer screen. So you can do what you need to without touching your keyboard. You can find Dragon Speech Recognition Software on Amazon and other online retailers.

DR. JASON SILVERSTEEN


RESEARCH

NEW DIRECTIONS IN DIET AND MSBY NICHOLAS LAROCCA, PHD

To think that you might be able to change the course of multiple sclerosis, or at least relieve symptoms, by eating or not eating specific types of food is enticing. However, “the proof is in the pudding,” scientifically speaking, since studying diet is challenging. That’s why it’s been exciting to see how many researchers were try-ing to do just that at the American Academy of Neurology’s annual meeting, which took place in Washington D.C., this April. Diet and MS was the subject of numerous platform talks and poster sessions, showing that clinicians and re-searchers are asking the same questions we hear so often from people who live with MS.

DIET AND MS SYMPTOMSIn a small study, Dr. Rocco Totaro and a team from the University of L’Aquila in Italy tested whether a six-week diet that was low in satu-rated animal fats, and high in antioxidants, would be associated with positive changes in body composition and fatigue in 17 people with relapsing-remitting MS. In their study, the participants’ percentage of body fat decreased, and their fatigue as measured by a clinical scale lessened significantly as well. We need more and larger studies like this, to show how diet

may impact symptoms that affect the lives of people with MS. What does it mean for you now? A healthy diet certainly can’t hurt, and it may even help both MS and general health. (Abstract P2.211)

MORE ON SALTWe’re hearing more and more about the possi-bility that salt may increase the immune activ-ity in the brain and spinal cord in MS. A team from the Network of Pediatric MS Centers showed that this may not be the case in chil-dren. Looking at salt intake prior to diagno-sis among 174 children or adolescents with MS, compared with 337 people without the disease, they saw no increased risk of develop-ing MS with excess sodium intake. It will be interesting to see if this finding is confirmed, and whether it helps us to understand if, when and how salt becomes a factor in MS. (Abstract S38.003)

COFFEE MAY LOWER THE RISK OF DEVELOPING MS, ALTHOUGH MORE RESEARCH IS NEEDED.


COFFEE AND MSPrevious studies have suggested that caffeine may protect against Alzheimer’s and Parkin-son’s disease, but there haven’t been any defini-tive studies in MS thus far. So I was intrigued by a study by an international team led by Johns Hopkins University researcher Dr. Ellen Mowry, which looked at coffee consumption in two large data sets—in a group of 1,629 Swed-ish people with MS and 2,807 people without MS, as well as a group of 584 people with MS and 581 controls enrolled in the Kaiser Perma-nente health plan of Northern California.

In the Swedish study, drinking six cups of cof-fee 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 us figure out how to prevent MS in the future. What this study doesn’t tell us is whether or how drinking coffee may impact MS in people who already have the disease, so it’s probably not a good idea to increase coffee consumption until we know more. (S45.004)

LOOKING IN THE GUTGut bacteria is another area where research is increasing, and it presents the exciting possi-bility that probiotic strategies may ultimately be developed to treat MS. I’m pleased that a small pilot grant from the National MS Soci-ety helped launch the MS Microbiome Con-sortium, a collaboration of researchers in Cali-fornia, Colorado and New York who presented some early findings from their analysis of blood and stool samples from people with MS treated

with glatiramer acetate, untreated individuals and healthy controls.

They found differences in gut bacteria between the treated and untreated individuals and also between those with MS and healthy controls. The team recently won a Collaborative MS Re-search Center Award from the Society to pursue this promising research. I’m eager to see more from this group, and to see how their findings can be translated into a way of stopping im-mune attacks in MS. (Abstract P2.205)

A NEW ERANot so long ago, searching the medical lit-erature for “diet and MS” yielded little. I’m thrilled to see that we are entering an era where diet and lifestyle are truly considered to be fac-tors that can help lead to innovative treatments and ultimately free the world of MS.

Visit www.nationalMSsociety.org/bulletins to sign up for MS eNews and stay up to date on MS research. n

Nicholas LaRocca is the vice president of Health Care Delivery and Policy Research at the National MS Society.

Originally published on MSconnection.org/blog.


ADVOCACY

LOCAL UPDATESFEDERALPUBLIC POLICY CONFERENCEThe National MS Society and MS Activists work year-round to advocate for change at the Federal level. We are working to ensure that Congress provides funding for MS research and the U.S. Food and Drug Administration so that we can stop disease progression, restore function, and end MS forever. We are advocating for Congress to continue funding the Lifespan Respite Care Program so that our nation’s more than 60 million family caregivers have access to quality respite care. MS Activists are working to pass the Advancing Research for Neurological Diseases Act of 2015 (H.R. 292/S.849). This bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases, including MS. This new data system could one day lead

to a cure for diseases like multiple sclerosis, as information collected will provide a foundation for evaluating and understanding aspects of these diseases on which we currently do not have a good grasp – such as the geography of diagnoses, variances in gender, disease burden and changes in healthcare practices among patients. Finally, we are continuing to advocate for passage of the Ensuring Access to Quality Complex Rehabilitation Act, which creates a separate benefit category under Medicare for complex rehabilitation technology (CRT), protecting access to these customized products so that people with significant disabilities can have their medical needs addressed and remain independent.

STATE

PENNSYLVANIALivable homes make everyday living easier and safer for people with MS. Some states have tax credits to help people with disabilities make their homes more accessible. MS Activists and the National MS Society are currently working on creating a home modification tax credit in Pennsylvania. In addition, we are working on legislation that reforms the current prior authorization system in Pennsylvania. Prior authorization requirements mean that specific criteria must be met before a drug or service will be covered by a health plan. Often, this process is lengthy and requires extensive paperwork, which can be a barrier to care for people with MS. This legislation will ensure that people with MS can access critical health services in a timely manner.

To learn more about our advocacy efforts or how you can help, please visit www.nationalMSsociety.org/Chapters/PAE/Advocate-for-Change or contact [email protected] or 215-271-1500.


NEW JERSEYIn New Jersey, we are also working on accessible home modification tax credits. MS Activists are working on legislation that requires providers to be more transparent about their policies and puts an end to surprise medical bills. In addition, we are working on legislation to expand access to doctor’s offices that are fully accessible according to ADA standards.

DELAWAREDelaware’s legislative session ended in June and will commence in January 2016. MS Activists are actively preparing for the session, where they will work on accessible home modification tax credits and other important legislative issues, including House Bill 200, regarding accessible parking. n

PICTURED IN THE FRONT ROW FROM LEFT TO RIGHT ARE DR. CLYDE MARKOWITZ (HUP), KEVIN MOFFITT (MS SOCIETY), DR. JOSEPH BERGER (HUP), DR. BRENDA BANWELL (CHOP) AND DR. AMY WALDMAN (CHOP), SURROUNDED BY THE COMPREHENSIVE CARE TEAM FROM HUP AND CHOP

A NEW PARTNER IN MS CAREHospital at the University of Pennsylvania (HUP) and Children’s Hospital of Pennsylvania (CHOP) named Center for Comprehensive MS Care: This unique center has shown the ability to offer a multi-disciplinary model of care to address the often complex needs of people living with MS from childhood through adulthood.


FALL FUNDRAISING EVENT RECAPBIKE MS: BIKE TO THE BAY had over 1,200 cyclists and 250 volunteers take part in the two day, 180 mile ride from Dover to Rehoboth Beach. It was another fun and memorable ride, raising $885,000 for MS research, programs and services.

THE PNC BANK THANKSGIVING DAY RUN/WALK FOR MS took place on a beautiful Thanksgiving morning. Over 2,800 people gathered in the heart of downtown Wilmington to run, walk and raise $140,000 for the National MS Society.

BIKE MS: CITY TO SHORE was cancelled for the first time in its 35 year history due to a state of emergency in New Jersey and the effects of Hurricane Joaquin. While it was extremely disappointing to cancel the ride, fundraisers were determined to show that City to Shore is not about tires, gears or bridges. It is about the mission of the MS Society, and it is about providing help and hope to people affected by MS. And thanks to the determination of our riders, despite not actually having the ride, we are on track to raise $5.7 million! n


RECOGNITION OF SERVICE AND COMMITMENTThe Greater Delaware Valley Chapter thanks the following retiring members of our Board of Trustees for their years of service. Their leadership and commitment have been instrumental in driving our work forward, and we are grateful.

Stephanie Battis New Castle, DE

Nate Cohen Philadelphia, PA

Heyward Damon Hockessin, DE

Pat Eiding Philadelphia, PA

Carl Hertrich Wilmington, DE

Brad Korman Plymouth Meeting, PA

Brad Krouse Philadelphia, PA

Maria McCabe Chadds Ford, PA

Tom O’Brien Wilmington, DE

Jeff Petty Hatboro, PA

Alan Potts Wilmington, DE

22 GOLDEN CIRCLE RECOGNITION

Ms. Cristina AbateMr. Craig L. AdamsMr. Frank AllisonMr. and Mrs. Robert J. Almond, Jr.Mr. Robert AlmondMs. Christine H. AndersonMs. Deb Anderson Mr. Jacob W. AndersonMr. and Mrs. Paul AndersonJessee AndrewsMr. and Mrs. Chris AshtonMs. Marion W. BanksMr. Richard A. BarronMs. Sandra BeardenMr. John BegierMr. and Mrs. Jack BeiterMr. James H. BellMrs. Dana L. BennettMrs. Maretess BergerMs. Joanne M. BerwindMr. Morris BeydaMr. James BlackMr. John BlakeleyMr. Tyler B. Blankenbiller

Mr. Michael BonsignoreMr. Greg BoschMrs. Carol L. BourdetteMr. and Mrs. Richard A. BradleyMrs. Joanne F. BradyMr. Nathan BrinkerMr. James M. BrizzolaraThe Bronstein FamilyMs. Susan BrooksMiss Caryn H. BrossMs. Amanda C. BrownMs. Karenanne BrownMs. Anne BrowneMrs. Connie BuergerMrs. Susan BueserMr. William BujalosMr. and Mrs. David M. BurnsMr. Carl T. BurtonMr. Dominique CalabreseMs. Jeanne-Marie CamacMrs. Janelle CamachoMiss Cynthia J. CarmonaMr. Nicholas T. CarriveauMr. Michael G. ChainMr. Jeff CiccantiMs. Teresa ClaugusMr. Bradford L. ClaymanMr. and Mrs. Robert W. ClevelandMr. Tedd Cocker and

Ms. Joan WheelerMs. Lori Coe

Ms. Elizabeth CogginsMs. Holly S. CohenThe Cohen FamilyMr. Robert A. Cohen Mr. Michael ConeliasMr. Trent ConeliasMr. Kevin J. ConnerMr. Ronald CooneyMr. and Mrs Joseph CorradinoMs. Donna CramerMs. Sabine CranmerMr. and Mrs. Scott A. CroffMrs. Jacqueline K. D’AngelisMr. Jason S. D’EntremontMr. Shane D’EntremontMr. Gerald E. Darling Mr. Gregory P. DarrochMrs. Heather DavisLoretto DavisMr. Robert L. DavisThe Gerber FamilyMrs. Deborah DennisMr. and Mrs. Albert DeRitisAshish DeshpandeMr. and Mrs. Leonard DeutchmanMs. Margaret DeutschMrs. Sylvia DiBona Ms. Erin M. DohertyMr. Michael DonohueMr. Dan DoughertyMs. Patricia Doyle

THE GOLDEN CIRCLE A special thank you to all of our members

Golden Circle members are fueling progress by annually giving $1,000 or more to the National MS Society. Golden Circle members receive invitations to exclusive research briefings, private lab tours, inspirational programs, and

many other opportunities to stay engaged with the movement.

THANK YOU TO THE FOLLOWING INDIV IDUALS FOR THEIR COMMITMENT TO THE MS MOVEMENT:


Mr. and Mrs. Jim DunleavyMr. David DunyMr. Jeffery Dwyer and

Ms. Marci DwyerMrs. Marie Teresa EganMr. Scott A. EllisMr. Stan Ellis and Mr. Curran EllisMr. Steven C. EllsberryMr. Hal A. ElrodMr. John ErcolaniMr. David ErmilioMr. Matthew J. Etzrodt, Sr.Mr. Joseph Eustace Mr. and Mrs. David EvansonMr. Mark R. Fabere The Fanning FamilyMr. Francis FerrySharren and David FilanStacey FinkMr. Alan W. FinkelsteinMr. Philip W.J. FisherShelly FisherMrs. E. Emily FlasinskiMr. and Mrs. Roger FoleyMr. Paul FranklinMs. Melanie L. FrantzMr. Michael M. FriendMr. Duncan GageMr. Frank GallMr. Mark H. GallantMr. Jose GarcesMs. Beth GardnerMr. Michael GarganoMr. Joseph P. GarrowMr. Matthew GeigerMs. Duana GeorgeMr. Rob GerritsenMr. Mario L. GianniniMr. Eric J. Gibson

The Hon. Barbara Gilbert and Mr. Alan Gilbert

Jay GillianMs. Mary Ann GindlespergerMr. Harvey GitlinMr. Matt GodfroyMr. Jason Matthew GoodallMrs. Bernadette M. GordonMr. Michael J. GreenMs. Valerie A. Griffin-FamousDr. Kent Griswold and

Dr. Lori GriswoldDr. and Mrs. Lincoln GriswoldMs. Kristina J. GrollerThe Guntz FamilyMr. Guy HackneyMs. Laurie HambleyMr. William C. Handley, Jr.Dale HardyMr. and Ms. Chris B. HarrisMr. Ian HarrisMs. Katie HarrisThe Hass FamilyThe Hassinger FamilyMr. Brian HawkAlexandra and Paul HeerdtMr. and Mrs. Jason HeminitzMr. Jeffrey Hepper and

Ms. Kellie HepperMr. Julio HerreraMs. Louette HewsMs. Margit Higgins Mr. J. Robert HollingerMr. Nicholas A. HolmesMrs. Candace L. HolzmanMrs. Lynne Honickman Ms. Theresa M. HooverMr. Bernard HopkinsMr. Rick Hughes

Mr. Ronald Humphreys, Sr.Mr. Charles R. IkeMr. Max Iles and Ms. Kim IlesMs. Jennifer IrelandMs. Susan IveyMs. Margaret G. Jacobs Mr. Thomas Jendrusch and

Ms. Lisa JendruschThe Jozefiak FamilyMr. Richard KalsonMr. David A. KassMs. Lynnete KefferMr. and Mrs. Robert E. Keith, Jr.Mrs. Toshia KerseyMiss Kendall C. KersteinMs. Gillian KleinThe Klein FamilyMr. and Mrs. Adam KorinchockMr. Steven KormanMr. Karthik KripapuriMr. Steven KrolakMr. Kenneth Kull III Mr. Charles D. KurtzmanMr. Bobby KuttehMr. and Mrs. Scott LaCoeMr. William LambertMr. Jim LardearMr. Chris LarsonMrs. Sandra S. LazarMr. David G. LeitchMr. Stanley J. Lesniak, Jr.Mr. and Mrs. Scott LightbodyMr. Eric LindbergMr. Michael LindsayMr. Edward LipkinDr. and Mrs. Philip LipkinThe Loftus FamilyMs. Karen LotmanMr. Ira M. Lubert

24 GOLDEN CIRCLE RECOGNITION

Mr. and Mrs. Karl LukensMs. Kerrie MacPhersonMr. and Mrs. Stephen R. MarchMr. Tom MarcinekDr. John T. MarmarouMr. Ben MascaroMr. William MastersMr. Robert MathewsMr. Joseph MattarellianoMr. Tom Mayer Mr. Mike McCabe and

Ms. Maria McCabeMrs. April L. McConnellMiss Sara E. McConnellMs. Maureen McDonald Ms. Karen McGoughMr. Kevin McGuinnMr. and Mrs. Eduardo McLearyMs. Fawn McMackinMr. Brian T. McManusMrs. Sharon M. McNamaraThe McNamee FamilyMr. James John McVey, Sr.Ms. Rita A. MeeksMiss Jaclyn C. MegrawMs. Denise MessineoMs. Carolyn K. MetcalfDavid MilbergMrs. Patricia A. MillerMr. and Mrs. Ken MillsMr. Robert Moatz and

Mrs. Lisa Yanolko-MoatzMr. William Thomas Monahan, Jr.Mr. William T. MonahanMr. William H. MorganMr. Chris MorrisMs. Leslie A. MoserMr. Joseph J. Mucerino, Sr.Mr. Arthur M. Mullin

Mr. and Mrs. Joseph MurrayDr. Carla Narducci and

Mr. Frank StrifflingCasie NeitzkeMrs. Donna M. NelsonMr. Tom NerneyMr. Justin NestorMr. Joseph NeubauerThe Nicholls FamilyMr. David T. NollMr. and Mrs. Robert NulfMr. Joseph W. O’DonnellMr. Paul O’GradyMr. Craig OrapelloMr. Marc OstroMs. Bonnie L. OswaldMr. and Mrs. Keith OwesMs. Jessica PaganMr. David PartridgeMr. Scott D. PattersonAndrzej PeskiMr. Stanley M. PeskinMs. Susan PetersonMr. and Mrs. Jeff A. PettyMr. and Mrs. PezzatoMr. and Mrs. Daniel PhelanMr. Richard Philips, Jr.Mr. James PickardMs. Madeline PospischilMr. Alan C. PottsMr. Thomas R. Pulsifer Mr. and Mrs. Donald PuseyMrs. Virginia M. Quaglio, RNMrs. Debbie QuarryMr. Brian RadwellMr. Stephen J. RauscherMr. Michael RaymondMr. Janardhan ReddyMr. Geoffrey S. Rehnert

Mr. Joel ReissMr. John RichmondThe Rivard FamilyMr. Joseph C. RivardMr. and Mrs. John RocktashelMr. Bruce RogersMr. Evan B. RosenbaumMr. Charles A. RowlandDebasish RoychowdhuryMr. Eric RozaMr. Avis Rueger and

Mr. Charles RuegerMs. Olivia RuegerMr. Michael RussalesiMs. Michelle D. RussellMr. Frank C. SabatinoMr. and Mrs. Mario SalasMr. George SantaMs. Danielle SantoraMr. Garry L. ScheibMr. Timothy C. ScheveMr. Brian R. SchmidtMr. Brian SchreierMs. Jill SchubertMr. Wayne M. SchultzMr. Dominic SchusterMr. Raymond ScottMr. Thomas L. Serano, Jr.Mrs. Beth L. ShankMs. Mari ShawMs. Molly Shepard and

Mr. Peter DeanMs. Joyce Shevchuck Ms. Barbara W. ShippMr. William L. ShippMr. and Mrs. Mark SlagaMs. Velva SlusarMr. Gregory L. SmithMr. Rowland Smith


Mr. Sidney V. Smith, Jr.Ms. Lauren SollThe Spitzner FamilyMr. Robert SteigerwaldMr. Richard W. SteketeeMs. Elizabeth StewartGary and Teresa StewartMs. Linda StrebMr. Jeff StriegelMrs. Jacalyn M. SullivanMrs. Victoria L. SullivanMs. Carole SwansonMr. Stuart TattumMr. Fred TaylorMr. Bruce E. TerkerMs. Joan ThalheimerMs. Linda ThomasMr. Peter Thomas and

Ms. Ann ThomasMr. Joseph M. Torsella

Ms. Lisa TravilineThe Traviline FamilyMr. and Mrs. Chris TredwayMr. and Mrs. Craig A. TremlMs. Susan TressiderMs. Georganna TurnbullMr. Jeffrey L. TylerMr. and Mrs. Steven UelandMr. and Mrs. Jeff VaughanMr. Gerald P. VerbruggheThe Verrastro FamilyMr. Charles T. VerrillMs. Mona VitaloneMrs. Judith M. von SeldeneckDr. Charlie Wahl and Dr. Naomi WahlMs. Nicole E. WalshMr. Craig WeatherupThe Weber FamilyChris WebsterMr. EJ Whelan

Ms. Louise H. WileyMr. Hans R. Wilhelmsen, Jr.Ms. Dawn WilliamsDr. Sankey Williams and

Mrs. Constance WilliamsDorothy and Chet WilsonMr. Michael WoodsMr. Ellsworth L. WynderMrs. Katherine L. YouseMr. and Mrs. Edward ZinbargMr. Benjamin ZuckermanMs. Jessica J. Zweifel

THIS LIST REFLECTS DONORS FROM THE START OF OUR CAMPAIGN IN JANUARY 2015 THROUGH NOVEMBER 2015. OUR APOLOGIES FOR ANY INADVERTENT ERRORS OR OMISSIONS. n

WHAT A DIFFERENCE A DAY MAKESWe’re proud to share that the 2015 Service Day was a success! Over 100 volunteers took part in 14 projects benefiting people living with MS in the Philadelphia, PA and New Castle, DE areas. Projects included painting decks, fences and front doors, raking leaves, mulching and general yard clean-up! n


FACE OF MS: ROBIN DORTONROBIN DORTON IS THE OWNER OF SALON HEAD CANDY IN CHERRY HILL, NJ. SHE WAS DIAGNOSED WITH MULTIPLE SCLEROSIS IN 2014. ON OCTOBER 29TH, SHE HELD A CUT-A-THON FOR MS IN CELEBRATION OF HER SALON BEING NAMED AN ARROJO AMBASSADOR. THE TEAM AT SALON HEAD CANDY OFFERED FREE MAKEOVERS DURING THE DAY TO PEOPLE LIVING WITH MS, AND DONATED 100 PERCENT OF THE PROCEEDS OF REGULAR HAIRCUTS TO THE MS SOCIETY.

HOW DO YOU BALANCE WORKING AND LIVING WITH MS?Well, I have to. As a salon owner, I’ve learned that I have to start being better at other things. I can’t always be behind the chair doing hair. I do hair two days a week. And if there’s a day I’m feeling good, I’ll pick up and do hair another day. I used to do five.

I became really good at social media because I had to. I became decent at learning how to update my website. I also network

and take business classes to learn how to keep the business growing. You make the adjustments. You use your brain power instead of physical power.

WHAT IS AN ARROJO AMBASSADOR SALON? Nick Arrojo (a celebrity hair stylist known for TLC’s “What Not to Wear”) and his team go around the country and handpick salons that fit his brand and fit his culture.

ROBIN DORTON, DIAGNOSED 2014


We get to carry his products, be a part of their education curriculum and train with them. It’s really nice. Not every salon gets to do that. You can’t get those products at any salon except for an Arrojo Ambassador salon or one of his salons in Manhattan.

WHERE DO YOU SEE YOURSELF FIVE YEARS DOWN THE ROAD? We’ve actually already outgrown our space. We’re going to have to expand a little bit. And we actually just did our first educational event where we taught other stylists. We made space to start doing education because people want to learn from us, which is a huge compliment. I want to grow our brand more and do more trainings.

WHERE DID YOU COME UP WITH THE NAME FOR THE SALON? I couldn’t come up with a name. A lot of people when they open a salon name it after

themselves. And I couldn’t do it. The reason why is because I feel like a salon is never one person. It’s always more about the team than the owner. And I couldn’t bring myself to name it after me because I didn’t want it to be about me.

And we were brainstorming and brainstorming. Finally, we landed on Head Candy. It fit the culture of what I wanted, which is upbeat and fun. n

Photos by James Jackson, Raven Eyesblog.

ROBIN AND NICK ARROJO

SALON HEAD CANDY CUT-A-THON FOR MS

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

A GREAT DEAL OF INFORMATION IS DISTRIBUTED ELECTRONICALLY - RESEARCH AND ADVOCACY UPDATES, PROGRAMS AND EVENTS, AND PERHAPS MOST IMPORTANTLY OF ALL, AN ELECTRONIC CLIENT NEWSLETTER. IF WE DON’T HAVE A VALID EMAIL ADDRESS ON FILE FOR YOU, YOU ARE NOT ABLE TO RECEIVE THIS VALUABLE INFORMATION. PLEASE CALL YOUR CHAPTER AT 1-800-FIGHT-MS OR EMAIL [email protected] TODAY TO BE ADDED TO OUR ELECTRONIC DISTRIBUTION LISTS.

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