Western PA Chapter's MS Connection Fall by Jennifer Staab

FALL 2014 WESTERN PENNSYLVANIA CHAPTER

MS CONNECTION NEWSLETTER WESTERN PENNSYLVANIA, WE HAVE EXCITING PITTSBURGH RESEARCH NEWS!

LEARN MORE INSIDE

INSIDE 03 THIS ISSUE

ADVOCACY: THE RESEARCH: NEW MANY FORMS OF RESEARCH ON SUPPORT WELLNESS AND MS

LIVING WITH MS: FIFTY STATES AND A WHEELCHAIR

WAYS TO GIVE: FOCUSING ON MS RESEARCH

MS CONNECTION: FALL 2014

STOP – Neuropathology

EXCITING NEWS FROM THE CHAPTER PRESIDENT

NMSS FUNDED RESEARCH COMES TO PITTSBURGH

Research Grant: “The role of the nuclear lamina in myelin regulation and demyelination” University of Pittsburgh researchers are investigating how a protein controls genes involved in the construction and repair of nerve-insulating myelin for clues to promoting myelin repair in MS. Project Term: 4/1/14 - 3/31/17

Grant Amount: $362,380

Project Leader: Quasar Padiath, MBBS, - University Pittsburgh, I amPhD very excited oftoPittsburgh, announce that thePANational

MS Society is currently funding a MS research project that is being conducted Quasar Padiath, PhD, is an assistant professor at the University of Pittsburgh. Dr. Padiath received an MBBS in at the University of Pittsburgh.

general medicine and surgery from Kilpauk Medical College (Madras, India) and a PhD in human genetics from the PICTURED ABOVE WITH ANNE, Indian Institute of Science (Bangalore, India). After completing a visiting fellowship at the National Centre for As you are aware the Chapter raises money to support MS research ISBiological A FEW STAFF MEMBERS OF Dr. Padiath Sciences in Bangalore, completed postdoctoral training in human, mouse, and fly genetics at both nationally and internationally. I met with lead investigator, THE WESTERN PA CHAPTER. Stanford University and the University of California at San Francisco. Dr. Padiath is a recipient of the Samuel and Dr. Padiath, this summer to learn more about the research project, EmmaYOUR Winters Foundation the Larry L. Hillblom Foundation for Aging Research Fellowship, a MEET CHAPTER STAFFResearch Award, touredofthe research lab and also invited Padiath to Science attend the Dean’s Postdoctoral Fellowship (Department Genetics, Stanford University) and theDr. Indian National AT A NATIONAL MS SOCIETY Association young scientists award. Chapter’s Annual Meeting, now scheduled for November 19, EVENT. 2014. Project Overview: Myelin, the fatty substance that surrounds and please protectsread nervea fibers, is attacked andMS destroyed in MS. The cells Below, summary of the research project thatin is the brain that make myelin are called oligodendrocytes. Myelin repair in MS is generally incomplete for reasons being conducted by Dr. Padiath and his staff at the University of that are not well understood. Pittsburgh.

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~ Anne Mageras

Western Pennsylvania Chapter Quasar Padiath, PhD, of the University of Pittsburgh, has received a research grant from the National MS Society to investigate the possible role of a protein called Lamin B1 in controlling activation of genes that are responsible for nationalMSsociety.org/PAX myelin regulation. Lamin B1 is found in the central nucleus, the part of the cell that contains DNA. Lamin B1 plays a pax@nmss.org

role in regulating gene activation, and increased amounts of Lamin B1 have been found in MS lesions. Dr. Padiath and colleagues have previously shownSTOP—NEUROPATHOLOGY that a gene mutation that produces increased amounts of the Lamin B1 us: Research Grant: known as a leukodystrophy, which is similar in some aspects protein Like causes another disease that also affects myelin /MSWesternPA “The role of B1 thein oligodendrocytes nuclear laminaarein myelin regulation to MS. They suggested that increased amounts of Lamin harmful to these cells due toand disruption of proper expression of genes needed to maintain myelin, ultimately resulting in the loss myelin and demyelination” University of Pittsburgh researches areof investigating Follow us:repair. To test the idea, they have created mice that express abnormally high amounts of Lamin insufficient myelin how a protein controls genes involved in the construction and @MSWesternPA B1 in oligodendrocytes. These mice show an age-dependent difficulty myelin in movement and muscle repair of nerve-insulating for clues to promoting myelin wasting. They are examining these mice to understand what genes are incorrectly turned on or off by excess Lamin repair in MS. Watch us: B1 and how this affects the ability of the oligodendrocytes to make, maintain, and repair myelin.

user/NationalMSSociety

Project Overview: Results from this study will increase our understanding of how myelin growth and repair are controlled at the genetic level, and may provide insight Quasar into why myelin repair is insufficient in MS and ahow to fix it. Itgrant may also Padiath, PhD, has received research from On the Cover: identify a new role for the Lamin B1 protein in MS disease the National MSmechanism. Society to investigate the possible role of a Stock NMSS Research Photo

NATIONALMSSOCIETY.ORG | 1-800-344-4867

protein called Lamin B1 in controlling activation of genes that are responsible for myelin regulation. Lamin B1 in controlling activation of genes that are responsible for myelin regulation. Lamin B1 is found in he central nucleus, the part of the cell that contains DNA. Lamin B1 plays a role in regulation gene activation and increased amounts of Lamin B1 have been found in MS lesions. Dr. Padiath and colleagues have previously shown that a gene mutation that produces increased amounts of the Lamin B1 protein cause another disease that also affects myelin known as a leukodystrophy, which is similar in some aspects to MS. They suggested that increased amounts of Lamin B1 in oligodendrocytes are harmful to these cells due to disruption of proper expression of genes needed to maintain

myelin, ultimately resulting in the loss of myelin and insufficient myelin repair. To test this idea, they have created mice that express abnormally high amounts of Lamin B1 in oligodendrocytes. These mice show an age-depended difficulty in movement and muscle wasting. They are examining these mice to understand what genes are incorrectly turned on or off by excess Lamin B1 and how this affects the ability of the oligodendrocytes to make, maintain, and repair myelin.

NATIONAL MULTIPLE SCLEROSIS SOCIETY

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.

Western Pennsylvania Chapter 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1-800-344-4867 nationalMSsociety.org/PAX Chairman: Douglas Miner, Esq. Chapter President: Anne Mageras Editor: Hannah Spear Design: Jennifer Skinner © 2014 National Multiple Sclerosis Society, Western Pennsylvania Chapter

Results from this study will increase our understanding of how myelin growth and repair are controlled at the genetic level, and may provide insight into why myelin repair is insufficient in MS and how to fix it. It may also identify a new role for the Lamin B1 protein in MS disease mechanism. n

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.

MS CONNECTION: FALL 2014

MS ERIE CLINIC

ADVOCACY

A NEW PARTNER IN MS CARE

THE MANY FORMS OF SUPPORT BY RALPH MONTEFUSCO

When my wife Michele was diagnosed with multiple sclerosis in October 2006, we faced a steep learning curve about the disease. Once we realized that the diagnosis wasn’t a death sentence, we established a structure around treating her MS and accommodating her symptoms. Michele and I have been married for 30 years. Not being a medical person or an especially warm and fuzzy type, I tried to find a way to provide support. I settled on using my experience as an activist to advocate on behalf of people with MS right here in Vermont as the co-chair of Burlington’s Committee on Accessibility and the chair of the Society’s government relations committee. I changed my life in other ways, as well. For the past 10 years, I worked as a consultant for a series of projects. Since I am a few years older than Michelle, our long-term plan was for me to retire first, while she continued working for several more years. However, it became apparent that support, just like MS, takes many forms. As time passed, I handled more tasks of our day-to-day life, and we decided that I would retire earlier than we had planned in order to take over our household

RALPH MONTEFUSCO AND MICHELE PATENAUDE

Michelle Mioduszewski, an Occupational Therapist and owner of Niagara Therapy, has been appointed a Partner in MS Care with our Chapter. She has demonstrated meeting crucial needs of people with MS with her background and training in MS. We are fortunate to have her on our team.

and financial responsibilities. While this admittedly resulted in a hit to our income, it also freed both of us. I am no longer on the road a lot, working late and spending large chunks of time on the phone and computer. Although I have a lot to do right here at home, it doesn’t have to be squeezed in around any clients’ needs. Meanwhile, Michele doesn’t have to struggle to find the energy and time to devote to the daily, essential tasks of our life. We would both prefer that MS wasn’t with us, but at least for now our quality of life has improved. The future will certainly hold more changes, but our partnership will remain the most significant means for us to adjust to whatever happens. n Ralph Montefusco and Michele Patenaude live in Burlington, VT. Provided by the Greater New England Chapter.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

The Centers for Comprehensive Care: • Focuses on the experience of the patient • Recognizes the benefit for patients to have access to a full array of medical, psycho-social and rehabilitation services to address the varied and often complex issues related to living with MS • Acknowledges clinical sites that demonstrate the ability to provide coordinated and comprehensive MS care to patients, while allowing flexibility in center operations and staffing models • Involves a strong collaboration between the Society and center • Recommended by a National Comprehensive Care Review Committee. n

6 RESEARCH

NEW RESEARCH ON WELLNESS AND MS BY NICHOLAS LAROCCA, PhD

The Annual Meeting of the American Academy of Neurology (AAN), held April 2014 in Philadelphia, featured thousands of presentations on neurological diseases. I was increasingly impressed with how many of these addressed wellness and lifestyle in people with multiple sclerosis. Entire sessions were dedicated to topics such as “Diet and Hormonal Influences in MS” and “Cognition and Fatigue in MS.” We are becoming more aware of the diverse paths toward finding solutions for everyone with MS.

DANCING WITH MS

MS CONNECTION: FALL 2014

FINDING SOLUTIONS FOR FATIGUE Fatigue is a significant problem that affects many people with MS – and one for which we don’t yet have enough solutions. I heard a report from Dr. Barak and a team from Israel on MSrelated fatigue. Based on the increasing evidence that too-low levels of vitamin D may be a risk factor for MS, they administered a compound similar to vitamin D (alfacalcidol) or an inactive placebo to 158 people with MS once daily for six months. The group treated with alfacalcidol had significantly less fatigue, improved quality of life, and even reductions in relapses. I think this study presents a promising lead for reducing fatigue that certainly warrants further study. Another group of researchers reported on other factors that might contribute to fatigue in people with MS. They used polysomnography – advanced technology used to diagnose sleep disorders – to examine 206 people with MS who reported that they had fatigue, but who had not reported sleep problems. This test revealed that 68% actually had obstructive sleep apnea. It was great to hear that there might be a way to reduce fatigue in MS by diagnosing and addressing sleep problems.

And even salsa dancing! Mandelbaum, Lo and colleagues (Providence, R.I.) reported on a study in which they enrolled eight people with MS in a fourSALSA DANCING MAY GOING WITH YOUR GUT week salsa program. Individuals HELP MS-RELATED One of the most interesting factors in participated in dance sessions GAIT AND BALANCE the complex picture of MS, to my mind, is twice a week. Dancing resulted ISSUES. the growing body of research on the role of the “gut in significant improvements in gait microbiome.” Each of us has millions of bacteria and balance both right after the program and living in our guts. Most of these bacteria are in a three-month follow-up. The National MS harmless as long as they remain within the inner Society is now funding Dr. Lo of this team to wall of the intestine. But in MS, these bacteria conduct a larger study that may lead to more may be contributing to the MS immune attack. widespread use of dance as physical therapy for Dr. Jhangi and colleagues at Harvard examined people with MS. microorganisms in people with MS who were

NATIONALMSSOCIETY.ORG | 1-800-344-4867 not on any disease-modifying treatment, those who were on treatment, and healthy controls. Certain bacteria that are known to promote inflammation were found to be increased in those with MS. Another type of bacteria known to block inflammation was lower in people with MS versus controls, but higher in those who were receiving one of the MS disease-modifying treatments.

To follow the latest research news on wellness in MS, visit www.nationalMSsociety. org/research, or sign up to receive MS eNews monthly via email at www. nationalMSsociety.org/signup. Talk about your own wellness strategies at www.MSconnection.org.

Inflammation occurs in MS when the body’s own immune cells attack the nervous system, damaging the myelin that insulates nerve fibers. Researchers are hopeful that by finding ways to reduce inflammation they may be able to limit the damaging effects of the disease. From this preliminary study, it’s too early yet to say how emerging information on the gut microbiome might impact future treatment of MS, but it’s fascinating to think that, down the road, we might affect MS by altering our internal bacteria.

2014 NEWLY DIAGNOSED TELECONFERENCE SERIES

IT’S FASCINATING TO THINK THAT, DOWN THE ROAD, WE MIGHT AFFECT MS BY ALTERING OUR INTERNAL BACTERIA. This is one small part of the AAN reports on wellness and lifestyle in MS. I am excited about the growing prospects for improving the daily life of people with MS. You can read more by browsing through the abstracts at www. abstracts2view.com/aan. n Nicholas LaRocca is the vice president of Health Care Delivery and Policy Research at the National MS Society.

REGISTER TODAY! NATIONALMSSOCIERTY.ORG/PAX This series is an opportunity to hear useful information directly from experts in the field. These experts will discuss information that is most relevant to someone who has been diagnosed with MS within the last two years. 9/9: Treatment Options 9/16: To Tell Or Not Tell: Disclosing Your MS

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8 ADVOCACY

PLEASE WELCOME, MARA BROUGH 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. 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. “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 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.”

MS CONNECTION: FALL 2014

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. 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. “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

JOIN US AT THE LOBSTERFEST FOR MS Friday, September 19, 2014 $75 per person Bavarian Hall, Altoona For more information visit nationalMSsociety.org/PAX and click on Join An Event.

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EMPLOYMENT

ASK THE EMPLOYMENT EXPERT BY CHRISTINA L. FORSTER, MA, CRC

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 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 “Symptom Management on the Job” for resources). n ADVERTISEMENT

Join us for the Women on the Move Luncheon Tuesday, September 23, 2014

To register for this event click on Join An Event at nationalMSsociety.org/PAX

MS CONNECTION: FALL 2014

LIVING WITH MS

I began traveling with my scooter, breaking it down to fit in rental car trunks. As my legs grew weaker, I started using portable hand controls to drive. But by 2000, MS affected me enough that working full-time was no longer possible. Three years and five states short of my goal, MS appeared to have pulled the plug.

BY GLORIA LEPIK CORRIGAN

ADJUSTING THE DREAM

FIFTY STATES AND A WHEELCHAIR About 25 years ago, I realized that I needed a meaningful plan to make the most of family recreation. At that time, there were hints that I “might have MS” and that it “might affect my future options.” Fortunately, this didn’t weigh on my plan, which was to get to all 50 states by age 50. When my adventure began, I was in my early 30s, working full-time and had two young children. And I thought I could handle it all.

Kansas, Alabama, Louisiana, Arizona, Colorado and Washington. I added Wyoming, Idaho and Montana during a family trip to Yellowstone. By age 40, I had reached about 39 states. I was on track!

ON TRACK

ENTER FOOT DRAG

However, in 2007, I tried a new medication that worked better for me. I started doing more around the house. I started using paratransit to go out. Everyone saw the difference. Gloria was back!

In fairness, my starting point was already nicely up the curve. I was born in Ohio, along the Michigan border. And living in the Northeast made it easy to knock off New York, Pennsylvania, New Jersey, Delaware, Maryland, Connecticut, Massachusetts, Rhode Island, New Hampshire, Vermont, and even Maine, without anyone having to invest too much time or money.

Who hasn’t tried to ignore the impact of MS symptoms? But a few face-forward falls, nearly missed flights (who can run for a connection when their legs feel like lead weights?) and badly twisted ankles took me to the neurologist and a definitive diagnosis of MS.

Traveling away from home still looked impossible. But my husband Kevin said, “Sure you can! Sure we can!” He picked up my dream and helped me to dust it off. However, we did adjust it a little. If I couldn’t hit 50 states by 50, I could still try for 50 by 60.

The next few years, I went from using a cane, to a rollator and then a scooter. But I continued to work, travel and rack up states. I made a side trip to Utah when visiting a friend in Las Vegas, Nevada. Then another friend got married in New Mexico. Frequent flyer points allowed me to travel to Alaska with my mother and sister. Then I added a side trip to Oklahoma during a business trip to Dallas, and another to Iowa during a trip to St. Louis.

THE FINAL FIVE

Virginia, West Virginia, North Carolina, South Carolina, Georgia and Florida were all part of a spring break drive. Then I visited Tennessee, Arkansas and Texas during a visit to relatives in San Antonio. I had already taken college trips to California and later, Indiana. Business travel took me to Minnesota, Illinois, Wisconsin, Kentucky, Missouri, Nebraska,

GLORIA AND HER FAMILY IN HAWAII.

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Over the next five years, my symptoms steadily worsened. I needed my power chair all the time. And with six hospitalizations in eight months, my future looked anything but bright.

In 2009, we pulled together an amazing trip to Colorado, Nebraska, South Dakota, North Dakota and Wyoming. We put 1,200 miles on a rented wheelchair-accessible van and discovered that national parks are free for people with disabilities. All of the airlines and hotels we used went out of their way to help us. The trip was flawless. Now I needed to hit only three more states!

The following year, a dear friend offered me a great opportunity. If I could fly to Atlanta, she would take me on a road trip. So I flew alone for the first time since using a wheelchair and we drove to Mississippi. Only two more states to go! In May 2013, after taking a quick tour of Portland, Oregon, my husband and I boarded a flight to Maui, Hawaii, where we met up with our daughters. Together, in my 50th state, we celebrated the achievement of my goal, plus our 30th wedding anniversary and (1 month early) my 60th birthday. Would I rather not have MS? You bet! Would I rather walk than ride? Absolutely! But my life has been colorful and fulfilling, and I am very grateful. MS almost robbed me of my dream. But with the loving support of my family and friends, I won this round. n To learn more about traveling with MS, visit www. nationalMSsociety.org/travel. Gloria Lepik Corrigan has lived with MS for over 30 years. ADVERTISEMENT Don’t let MS keep you from your independence! Brant’s Driving School has over 30 years of experience in evaluating and training people with adaptive equipment. • • • • • • •

6 cars equipped with hand controls and steering devices One car with reduced-effort steering 2 lowered-floor minivans that are able to be driven from a wheelchair High-tech (EMC) controls including joystick and voice-activated secondary controls Full-size truck with hand controls and Bruno Valet Plus seat 2 Certified Driver Rehabilitation Specialists on-staff Office locations in Pittsburgh, Harmarville, and Johnstown We provide door-to-door-service!

MS CONNECTION: FALL 2014 Daniel Haeberle

Brianna Hudock

SCHOLARSHIP

2014 AWARD RECIPIENTS The Western PA Chapter of the National MS Society is pleased to announce that scholarships have been awarded to six recipients who demonstrated a commitment to academics, community service and involvement with Western PA Chapter of the National MS Society. Each recipient received a $2,000.00 scholarship for the upcoming 2014-2015 academic year. The National MS Society’s scholarship program exists — to help outstanding high school seniors who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The National MS Society Scholarship Program is for first-time college freshmen only. For more infomraton on the scholarship program, please visit the website at www.nationalmssociety. org/scholarship. The program opens October 1, 2014 and will close in January 2015. n

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Help cHange tHe world for those living with Ms! The National MS Society and Highmark are working together to seek volunteers to participate in an innovative “Fatigue Forecast”

Regis Kearney

Marshall Neff if you have been diagnosed with Ms, you are invited to participate in a 30-day program that explores ways to predict when fatigue will impact your life. so many of us with Ms can be stricken with fatigue at any time. we can’t prevent fatigue, but we have an opportunity to empower ourselves by being able to know when fatigue might strike.

the solution we hope to find is designed around your lifestyle—predicting good days versus bad days, so you have a leg up on your disease to say “beat you to it fatigue, i’m in charge!” Participants will be asked to wear a body sensor for 30-days and to keep a simple journal. in exchange, you will be helping to build a new predictive technology that has the potential to help people with Ms throughout the world. Participation is limited to 100 participants who are 18 years or older with any stage of Ms.

if you would like to enroll, please email paula@metafitsolutions.com the following information: • name • Address • Phone number • Cell phone number • Date of Birth • stage of Ms (if you know it)

deadline to register: September 26, 2014 program start date: october 4, 2014 together, we have the opportunity to be successful with the genesis of a new era of how people can live a richer life with MS! highmark Blue Cross Blue shield is an independent licensee of the Blue Cross and Blue shield Association. Blue Cross, Blue shield and the Cross and shield symbols are registered service marks of the Blue Cross and Blue shield Association. highmark is a registered mark of highmark inc. 7/14

Cs 202142

Sasha Baez-Sprague Lauren Echols Participants who complete all four weeks of the program will be entered into a random drawing for a brand new IPad!

MS CONNECTION: FALL 2014

BRIGHTEN A CLIENT’S DAY!

WAYS TO GIVE

FOCUSING ON MS RESEARCH At the time of her diagnosis with multiple sclerosis in 1995, Perry Ann Jeveli was a 30-year-old graduate student looking forward to a bright career in business. Shocked by her inability to see clearly or walk unassisted during her initial exacerbation, she sought to understand the impact MS might have on her future. As she learned more about the disease, she became convinced that there must be other people with MS who were living active, healthy lives and benefiting from research advances. “At that time, I knew there must be other sides to this disease. I wanted to understand what was possible,” reflects Jeveli. With her neurologist Stephen Hauser, MD, at University of California, San Francisco (UCSF), she worked to take advantage of one of the first therapies available for people with MS and formed a Walk MS team, “Pear’s Pack.” To date, Pear’s Pack has raised more than $500,000. As she learned more about the National MS Society-funded research taking place at UCSF, Jeveli resolved to increase her volunteer efforts. In partnership with the Society and UCSF , she created the Jeveli Research Fellowship in 2013 supported by the funds raised by Pear’s Pack, whereby promising young doctors receive special training at UCSF to develop the complex

HOLIDAY GIFT

PROGRAM!

PERRY ANN JEVELI (LEFT) AND HER MOTHER, BARBARA SCHAUFFLER (RIGHT), STAND ALONGSIDE DR. SABEEN LULU. skills involved in the design, implementation and analysis of MS clinical trials with the goal of accelerating much-needed treatments. “With so much promising research taking place, alongside the critical need to attract outstanding MS researchers, it was important for me to further refine the focus of our fundraising. Donors to our Walk MS team appreciate the direct correlation that their donations have with exciting research advances,” Jeveli says. At the Society’s Leadership Conference in November, Jeveli met the first Jeveli Research Fellowship recipient, Dr. Sabeen Lulu, whose work focuses on pediatric MS. Today, Jeveli’s commitment to MS is stronger than ever. Not only does she continue to grow her team’s fundraising to support focused research initiatives, she is also eager to lend her ear and heart to those newly diagnosed, sharing her hope for the future. n

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Each year the NMSS coordinates this program to provide gifts to people living with MS who reside in long term care facilities. Knowing that nursing homes and personal care homes can sometimes be lonely places, we strive to put smiles on the faces of these individuals and let them know that the National MS Society is thinking of them. We would like to challenge you to make a commitment to this great program and to directly impact a person’s life this holiday season!

Learn More or Donate Today! Call Pam at 412-261-6347 Looking for a fun and supportive group of people with MS, who are roughly within the age range of 18 to 35? Join us in hope to listen, encourage and connect with each other. We meet on the 2nd Tuesdays of each month in the back meeting room at the Panera Bread in Shadyside. Questions or to RSVP contact us at 937-269-5455 or at em.and.sequins@gmail.com

ASK THE THERAPIST What can Occupational Therapy, Physical Therapy and Speech Therapy do for me and my Multiple Sclerosis? Occupational Therapy • Teach new or compensatory strategies for completing activities of daily living (ADLs) • Energy conservation strategies for home and work environments • Educate patient and family on adaptive equipment for completing self-care and self-feeding • Ergonomic work assessments • Assist patient with qualifying for durable medical equipment and/or mobility devices (cane, walker, scooter, wheelchairs) • Strengthen muscles, improve fine motor coordination, and manual dexterity Physical Therapy • Balance training • Gait training • Durable medical equipment and/or mobility device training (cane, walker, wheelchair, scooter) • Tone management • Energy conservation strategies for home and work environments Speech Therapy • Treat cognitive impairments • Teach and create strategies for improved memory • Compensatory for strategies for memory loss • Executive functioning • Organization strategies • Sequencing • Finance management • Medication management Please send us your questions or comments so that we may assist you in living your independent life style. Your Therapists - Niagara Therapy, LLC

16 ASK THE THERAPIST Q: If I have MS, should I exercise? Is there anything I should keep in mind when exercising in the summer? A: It is beneficial for everyone, including (or especially) people living with MS. Benefits of exercise include improved cardiovascular fitness; improved strength and flexibility; less fatigue and depression, and increased opportunity for socialization. Here are some helpful tips to keep in mind to make your exercise time safe and enjoyable: • Incorporate a warm-up and cool-down into your exercise program. • Start slowly and increase your work-out gradually to allow your body time to adapt. • Listen to your body and slow down if necessary. Over-doing it may lead to increased fatigue, muscle injury and pain. Do not exercise so vigorously that you are unable to do other daily activities later in the day. Exercising in the summer months can present extra challenges to those dealing with MS, since overheating can lead to increased fatigue and weakness. Here are some tips to help avoid this problem: • Adjust the time of your work-out to avoid the heat of the day. • Break up exercise into shorter, more frequent periods of time. • Increase water intake before, during, and after exercise. • Exercise in water if possible. Ideally the water temperature should be below 83˚ F. There are many types of exercise options available to help you meet your fitness goals. Some examples of exercises that can be done by people with varying levels of abilities include aquatic exercise, yoga, tai chi, cycling (there are recumbent/modified cycles to pro-

MS CONNECTION: FALL 2014 vide increased support and safety), or group exercise programs. You should always consult your physician prior to beginning an exercise program. You can also consult with a physical therapist to assist you in creating and exercise program to meet your individual fitness needs and goals.

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Signed, Your Niagara Therapists ~Carla PT

TALK TO EXPERTS LIVE — RIGHT FROM YOUR COUCH

Please remember that the information in this column, including the therapist’s response, is for informational purposes only and should in no way replace a conventional visit or consultation from an actual live therapist or physician.

GILENYA live Web events are interactive webcasts that let you talk to medical experts and GILENYA Guides (real people on GILENYA) right from your home. Find out if GILENYA could be right for you.

If you would like to speak to a therapist or schedule an appointment at Niagara Therapy, LLC please call 814-464-0627. Email your questions for this column to shellylynn-ot@juno.com

We’re online and ready to go every Tuesday (7:00 pm ET, 4:00 pm PT) and Thursday (10:00 pm ET, 7:00 pm PT)

References: Cleveland Clinic: “Exercise and MS” MS Society: “Exercise” www.nationalMSsociety.org

Reserve your spot at: www.gilenyapatientprograms.com

THANK YOU SARRIS CANDY! Scott M.

is a GILENYA Guide — a real person who takes GILENYA. Novartis compensates him for his time.

The National MS Society would like to thank and congratulate Candace Sarris and everyone who participated the Frank Sarris Memorial Golf Classic. n

Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080

Printed in USA

7/14

T-GYA-1305794

MS CONNECTION: FALL 2014

MONEY MATTERS

MANAGING YOUR MONEY WITH MS Gloria Dady had envisioned spending the rest of her working life taking care of people. She never expected that, in her 50s, multiple sclerosis would force her to start drawing on her retirement nest egg. It was unsettling — until she reached out for help from the National MS Society. Through the Society’s partnership with the Society of Financial Service Professionals, people affected by MS can get free financial counseling from trained professionals through the Financial Education Partners (FEP) program. Doug Head, CLU, ChFC, a financial advisor with Edward Jones in Tukwila, Wash., is one such volunteer. Head helps people plan for a life with MS by talking about basic budgeting, different ways to save, how to maximize health insurance benefits and more. But he lends more than his number-crunching know-how. He and other FEP volunteers also offer hope that any financial challenge can be tackled with patience and planning. “Dealing with the challenges of MS often leaves people feeling that their finances have gotten away from them,” Head says. “The first thing I ask is, ‘What are your two or three major financial concerns?’ This helps us focus on what’s really important to them.” Dady appreciated talking to a finance professional who could explain everything clearly and

NATIONALMSSOCIETY.ORG | 1-800-344-4867

GLORIA DADY WITH HER GRANDCHILDREN compassionately. Head discussed strategies to lower her tax payments and keep her retirement savings intact, even as she drew on it for income. Over the past four years, Head has offered free financial advice to more than 100 people who have been referred to him by the Society. “The people I’ve met are wonderful,” Head says. “I’ve been inspired by their journeys.” People living with MS can talk in person or over the phone with FEP volunteers about financial topics such as insurance analysis, retirement, estate planning and legal planning. To learn more, visit www.nationalMSsociety.org/ financialplanning or call an MS Navigator at 1-800-344-4867. n This article was originally written by Liz Murtaugh Gillespie of Moore Ink. PR & Fundraising Communications and was published in the Spring 2014 issue of the Greater Northwest Chapter’s MSConnection. National Multiple Sclerosis Society’s United Way workplace giving designation code for Allegheny County only is: 898

20 WESTERN PA CHAPTER BIKE MS

CYCLISTS ACCEPTED THE CHALLENGE THE 2014 BIKE MS: SERIES

Have you ever been part of something bigger than yourself? Have you ever stepped into a role that was challenging, ultimately scared you, but brought you joy and excitement? We are proudly able say a collective “YES!” We are happy to report on the 2014 Bike MS: Series, including Bike MS: Escape to the Lake, the Keystone Country Ride and the Cook Forest River Ride. The great success of all three of our Bike MS rides enables us to create awareness and raise critical funds that move us closer to a world free of MS. In June, over 1,100 cyclists accepted the 2-day 150 mile challenge of Bike MS: Escape to the Lake. Despite the grueling hills of Western PA, we managed to keep the soaring summer temperatures at bay and cyclists powered through with determination and perseverance. A total of more than $800,000 has been raised thanks to our dedicated Bike MS: Escape to the Lake participants and supporters. In July, more than 500 cyclists came together to embark on a 2-day, 150 mile loop through the rolling hills of central Pennsylvania. State

MS CONNECTION: FALL 2014

NATIONALMSSOCIETY.ORG | 1-800-344-4867

College provided and unbeatable place to celebrate the first day’s accomplishments while luxurious overnight accommodations and inspiring dinner program geared cyclists up for another full day of riding. Nearly $450,000 has been raised thanks to our dedicated Bike MS: Keystone Country Ride participants and supporters. Finally, we are gearing up for our Bike MS: Cook Forest River Ride on September, 20th. We expect nearly 500 cyclists to make their way to scenic Cook Forest State Park to enjoy a one-day ride on a gently rolling route along the Clarion River. With money still coming in, we hope to raise over $100,000! We are forever thankful to all the people who played a part in making the 2014 Bike MS season a success. From cyclists and volunteers, to sponsors and supporters, we are proud to call these people a part of our Bike MS family. n

Escape to the Lake Ride 2014

SPECIAL THANK YOU TO FEDEX GROUND, PRESENTING SPONSOR OF BIKE MS: ESCAPE TO THE LAKE

WALK MS PRESENTING SPONSOR

WE COULDN’T DO IT WITHOUT OUR PARTNERS! Corporate partners move our cause forward, and we would like to take a moment to thank a few of the many corporate partners that enable us to create such wonderful events! Walk MS presenting sponsor,

, does it again!

A huge thank you goes out to all of our friends at TeleTracking Technologies, who were once again our generous Walk MS Presenting Sponsor. Through corporate partnership and an awesome corporate team TeleTrekkers, lead by employees, TeleTracking contributed over $31,000! The team and TeleTacking employees knocked it out of the park with a fun-filled afternoon fundraiser at the office which included treats from Rita’s and t-shirt sales. Together, Team TeleTrekkers raised over $1,000 in one afternoon! Way to go! Their continued support has helped us grow our Walk MS campaign to include over 8,600 walkers at 13 Walk MS events across 26 counties of Western PA. We are thrilled to announce that TeleTracking hs officially signed on to the 2015 Walk MS campaign as our presenting sponsor for the 5th year in a row! Thank you for your continued support TeleTracking, we look forward to working with you next year! n

22 WESTERN PA CHAPTER WALK MS

WALK THIS WAY WALK MS IS A SIMPLE, BUT INCREDIBLY POWERFUL WAY FOR YOU TO SHARE IN THE HOPE FOR THE FUTURE. The 2014 Walk MS campaign got community members moving and left them moved! A special thank you goes out to everyone who came to one of the 13 Walk MS events throughout 26 counties of Western Pennsylvania. By joining the Walk MS movement, you joined our fight to stop MS. You shared a remarkable achievement with more than 8,600 other Western Pennsylvania walkers. Most importantly, you made a difference by helping to raise over $900,000 thus far for research and services for people with MS living in Western Pennsylvania! Some highlights from the 2014 Walk MS campaign include YOU can be proud of: • Walk MS: Pittsburgh was held on Saturday April 12th, and despite a grueling and long winter, spring finally sprung and the weather was delightful! We are proud to report that the 2014 Walk MS: Pittsburgh was our largest yet… 3,500 walkers converged on Point State Park and with more than $400,000 raised! • The second annual Walk MS: Uniontown was a smashing success and nearly doubled in size and fundraising this year! On April 26th more than 300 people came out to Penn State Fayette and raised over $33,000 – surpassing our goal! Thanks again to all of the wonderful people of

MS CONNECTION: FALL 2014 Uniontown for your enthusiasm and generosity. We are all so proud of our youngest Walk MS and can’t wait for next year! • Erie’s 2014 Walk MS rocked! Presque Isle State Park was full of sunshine and enthusiastic walkers on May 4th. Over 600 members of the community came to Presque Isle State Park and raised nearly $50,000! Way to go Erie! • Walk MS Hollidaysburg had one of its best year yet! Walker’s spirits could not have been higher, and the numbers prove it. More than 840 people raised over $76,000… now that’s something to be proud of! We unite as a community during Walk MS to make a powerful statement – to keep us moving toward a cure of multiple sclerosis. Whether you walked, volunteered, donated or fundraised, we thank you for getting involved. You are an important part of the Walk MS movement. Remember, each step you take brings us closer to a work free of MS. We look forward to working with all of you for a great 2015 Walk MS season, and please stay tuned for walk dates, locations and more. Thank you to our local sponsors: Teletracking (presenting sponsor), KDKA TV, KDKA Radio, SAM’s Club, Allegheny Health Network, Peoples Natural Gas, Betsy Ann Chocolates, The Pittsburgh CW, Lamar, Excela, TR&C, Eat’n Park, Ritas, Texas Roadhouse, Snyder, Pepsi, Sarris Candies, Toshiba, Mylan, Gitano Productions, Cool 101, Ainsworth Pet Nutrition, Fox 66, Your Erie.com, UPMC Northwest, ABC, Northwestern Rural Electric, Jet 24, Northwest Savings Bank, American Refining Group, Frogg y 98, WTAJ, Sunny 106, Imler’s, Papas Johns, and more!

NATIONALMSSOCIETY.ORG | 1-800-344-4867 ADVERTISEMENT

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047

1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1-800-344-4867

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. To register call 1-800-344-4867, or visit nationalMSsociety.org/knowledge.

ANNUAL MEETING AND HEALTH FAIR Wednesday, November 19, 2014 Sheraton Station Square Vendor Displays from 4 pm - 6pm Dinner & Program start at 6 pm

RSVP by November 12, 2014 Call: 800-344-4867 | Online Registration: nationalMSsociety.org/pax | Mail RSVP (below)

Vendor Displays – Visit a variety of community booths, medical equipment companies and more.

First and Last Name: _______________________ ________________________________________

Round Table Education Sessions and have an opportunity to learn about DIY Fundraising, Walk Number attending: ________________________ MS and Bike MS and other special events. Number of vegetarian dishes: _________________ At the “Ask the Health Care Provider Booth” you will have an opportunity to ask questions Number of additional guests ($20 each): ________ regarding symptom management, legal and employment issues, rehabilitation and therapy and Total enclosed: ____________________________ much more! Sit Down Dinner with a Guest Speaker and a Research/Treatment Update with Local MS Specialists, Board Election and Treasurers Report.

MAIL RSVP TO:

National MS Society, Western PA Chapter, 1501 Reedsdale St, Ste 105, Pittsburgh, PA 15233