SPRING 2014 WESTERN PENNSYLVANIA CHAPTER
MS CONNECTION NEWSLETTER WE WILL CROSS BRIDGES...
TO CREATE A WORLD FREE OF MS
INSIDE 03 THIS ISSUE
LIVING WITH MS: EXERCISE: OUR DAILY ALLOWANCE
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NEWLY DIAGNOSED: WEEKEND PROGRAM
RESEARCH: THE PROMISE OF MYELIN REPAIR
WAYS TO GIVE: BAD FOR A GOOD CAUSE
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MS CONNECTION: SPRING 2014
LETTER FROM THE PRESIDENT
THE NMSS STRATEGIC RESPONSE TO MS GOAL NUMBER 5 “We develop and align human, business and financial resources to achieve breakthrough results.”
ANNE,ON THE LEFT, PICTURED WITH 2013 GUESTS AT THE WOMEN ON THE MOVE LUNCHEON HELD IN SEPTEMBER.
CONNECT WITH US ONLINE: Western Pennsylvania Chapter nationalMSsociety.org/PAX pax@nmss.org Like us: /MSWesternPA Follow us: @MSWesternPA
The Western PA Chapter of the National MS Society is committed to creating a consistent, donor-centered approach to identifying, cultivating , soliciting, acknowledging and stewarding individuals who make donations through Special Events and Individual Giving Campaigns.
EXERCISE:
exercise in multiple sclerosis has shown that it can improve mood, MS-related fatigue and cognitive function.
BY JULIE STACHOWIAK, P H D
Notably, exercise has also been shown to increase overall daily activity level, functional capacity and balance in people with MS, as well. In total, this adds up to a measurable increase in quality of life.
OUR DAILY ALLOWANCE OK, we all know that we should be exercising. Besides all of the great stuff that exercise does for everyone (such as lowered cardiovascular risk and increased muscle mass), research on the effects of
This year, you will also begin to see increased activity and focus on Individual Giving Campaigns. Society-wide, Individual Giving Programs represent nearly 30% of overall organizational revenue. Individual Giving revenue for the WPA Chapter is raised through the following channels:
My heart felt thanks to all those who support the Chapter through Individual Watch us: Giving and to learn more about Individual Giving opportunities please visit the user/NationalMSSociety Chapter’s website at: www.nationalMSsociety.org/PAX.
On the Cover: 2013 Walk MS: Pittsburgh
LIVING WITH MS
This is the time of the year that we all get geared up for Walk MS, Bike MS, Finish MS, MSquerade, Golf Outings and Do It Yourself Fundraisers!
• Direct Marketing Contributions: Gifts made to the Society’s direct marketing program including mail, Helping Hands, telephone and on-line gifts. • Individual Contributions: Non-Special Event gift made by individual donors directly to the Chapter. • Work Place Giving: Gifts made through Company Matching Gifts, United Way, and Community Health Charities. • NOW Research Campaign: Individual contributions restricted to NMSS funded MS Research. • Golden Circle Campaign: Golden Circle Members are individual donors who contribute $1,000 or more outright or through special events. Golden Circle Membership benefits include: • Invitations to Research Briefings, MS Comprehensive Care Center & Lab Tours, • Unmatched access to breaking MS Research news via webinars & email notification, • Invitations to Golden Circle Donor/Salon Events and • A subscription to both Momentum Magazine and MS Connections
~ Anne Mageras
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NATIONAL MULTIPLE SCLEROSIS SOCIETY 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
WHY NOT? There is even limited evidence in animal models that exercise therapy may halt, slow or reverse disease progression of MS. Exercise therapy is an individualized exercise or plan typically prescribed by a doctor and done under the supervision of a physical therapist or other healthcare provider. There are specific guidelines, based on scientific data, for programs combining resistance and endurance testing. While that is great and all, raise your hand if you are currently participating in an exercise therapy program. See what I mean? continued on page 4 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.
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MS CONNECTION: SPRING 2014
EXERCISE: OUR DAILY ALLOWANCE continued from page 3 He has some ideas on how to prevent this Studies show that fewer than 20% of people in the exercise attrition, however. Rather than pushing general U.S. population get the recommended for a formal exercise therapy program, we should strive to incorporate more physical activity into our daily lives. Dr. Motl calls this “lifestyle activity,” and points out that intermittent EXERCISE HAS BEEN SHOWN TO INCREASE exercise has been shown to have the same effect OVERALL DAILY ACTIVITY LEVEL, FUNCTIONAL as “continuous bouts” of exercise. In other words, CAPACITY AND BALANCE IN PEOPLE WITH MS. accumulating 30 minutes a day of moderate exertion doing things like walking, gardening or pushing a vacuum cleaner can be as effective as a 150 minutes of moderate-intensity exercise per more formal 30-minute exercise session. week. In people with MS, this number is definitely lower, as research shows that activity in people In addition to this new approach to getting our with MS starts off low and declines over time. recommended daily allowance of exercise, Dr. So, why don’t we exercise? As a person with MS, Motl has been researching the effect of social that is a pretty simple question to answer: Even cognitive theory, which relies on perceived selfthough I know it will make me feel better, many efficacy. Simply put, a person will be much more times I feel so horrible or so fatigued that the likely to do something if they believe that they thought of 30 minutes of sustained exercise just CAN do it. Putting this theory to the test, Dr. Motl’s research group tried it out on people makes me laugh. Or cry. with MS. After three months, the people who participated in the self-efficacy component A WAY INTO EXERCISE exercised more, exerted themselves more and However, there may be an answer, according reported feeling better than those in the group to Robert W. Motl, PhD, in his presentation who did not receive the self-efficacy message. at ECTRIMS 2013, titled “Physical activity MODELING HEALTH in MS: Theory, determinants and behavioral I’m a huge fan of this new paradigm of interventions.” incorporating exercise into daily life. After Dr. Motl reminded the audience that it is not seeing the title of an article, “Is Sitting the New just people with MS who don’t stick to exercise Smoking?” in a popular magazine, I bought a programs. According to studies, over 50% of pedometer and now force myself to get at least adults drop out of any formal exercise program 10,000 steps a day. Since a part of self-efficacy after 3 months. And after 6 months, 75% have involves “modeling” or seeing others do the same thing, I monitor an online group of people who stopped exercising. log their steps daily. In this way, I have made
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exercise a habit. I can tell you, I feel much better than I did when I would visit the gym for 3 days straight and then take a 6-month break. For those of you who may have limited mobility, you can still get the many benefits of exercise by exerting yourself to the extent possible to do your daily activities. Talk to your healthcare provider about what activities may work best for you. For more ideas on how to make exercise a part of your everyday life, visit www.nationalMSsociety.org/exercise. n Julie Stachowiak, PhD, is an epidemiologist, author of The Multiple Sclerosis Manifesto, and a person living with MS. Originally published at www. MSconnection.org/blog.
WESTERN PA CHAPTER BIKE MS
RIDE OR VOLUNTEER WITH US! Come join us on one of our extraordinary Bike MS rides this year. Bike MS is more than a ride, it’s the experience of a lifetime. We are pleased to announce our 2014 Bike MS events: Bike MS: Escape to the Lake June 7 - 8, 2014 » 2 day ride Start: Harmony, PA » Overnight: Meadville, PA Finish: Conneaut, OH Bike MS: Keystone Country Ride July 19 - 20, 2014 » 2 day ride Start/Finish: Hollidaysburg, PA Overnight: State College, PA Bike MS: Cook Forest River Ride September 20, 2014 » 1 day ride, 35 or 60 miles Location: Cook Forest State Park, Cooksburg, PA We welcome participants to ride in these fundraising events. Additionally, we have many volunteer opportunities for individuals and groups of all sizes at each of these events. Our signature rides are a great opportunity to support the National MS Society, Western PA Chapter and our vision of a world free of MS. For more information, please check out: www.bikeMSwesternPA.org.
Bike to Create A World Free of MS, pictured above cyclists at the 2013 Bike MS: Keystone Country Ride
Please contact Chris, Chris.Pfeiffer@nmss.org or 412-261-6347, for more information.
6 LIVING WITH MS
CONNECT AT:
WWW.NATIONALMSSOCIETY.ORG The National Multiple Sclerosis Society’s website at www.nationalMSsociety.org connects people like yourself who are living with MS with the information, people and resources that can help you and your loved ones live your best lives. To that end, many exciting changes to the site have taken place to improve your ability to connect to:
INFORMATION Updated navigation, new content and improved searching help you find what you’re looking for faster.
EACH OTHER Our growing online community is even easier to access, making it easier for you to share your experience with others living with MS, healthcare providers and MS researchers.
MS CONNECTION: SPRING 2014
NATIONALMSSOCIETY.ORG | 1-800-344-4867
Eight Hours to a Lifetime of Relationship Satisfaction
tablet or other mobile device; and easier-toread content and accessibility for anyone using assistive devices like screen readers.
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(a program for couples living with MS) Seven Springs Mountain Resort May 3 & 4, 2014
YOU TALKED, WE LISTENED Many of you – people living with MS, friends and family members, event participants, volunteers, donors and professionals – contributed ideas and input toward the new site. You shared what information matters most to you, tested the site as it was developed and made suggestions – you even helped get rid of a few “bugs.” Now, the next generation of www.nationalMSsociety.org is designed to help you:
The National Multiple Sclerosis Society, Western PA Chapter, invites you and your spouse/partner to a workshop for couples living with the challenges of MS. Couples who come together for support and education will find they are not alone in their efforts to find a place for MS in their relationships.
• Find relevant information, programs, services, and resources; • Connect with others, share information and get support; • Participate in events, advocate for change, raise awareness, champion research, and discover more ways to engage.
Saturday May 3, 2014 – Sunday May 4, 2014 Seven Springs Mountain Resort 777 Waterwheel Drive Seven Springs, PA 15622
Take some time today to tour the new site at www.nationalMSsociety.org, and let us know what you think. If you happen to find a bug that snuck through the cracks, let us know that too. n
ADVERTISEMENT Transp or t U, LLC . Accessible Transp or tation THE MS MOVEMENT (doc tor s appointments/shopping/ social appointments and more) Several new features make joining the MS A Western PA Based sp ecialized movement even more possible. These features transp or tation company with a focus include: a “My Profile” section where you can on p ersonalize d trips. access your profile information, set preferences and Call today to schedule a trip or track your involvement; a mobile-friendly design inquire about our ser vices! that lets you view the site from your smartphone, 412. 281. 8350
This dynamic, 8-hour program will help you learn how to: Break patterns that prevent effective communication Apply successful problems solving techniques Work as a team to manage MS and your relationship
Saturday: Time: 11:00 Check – In / Registration 12:00- 4:00 pm Welcome & Introductions & Ice Breaker Workshop Expectations and Workshop Sessions 1-3 6:00 pm 7:00 pm
Dinner Free time to enjoy 7 Springs
Sunday: Time: 7:00-8:30 am – Breakfast 9:00 am – 1:00 pm Workshop Sessions 4-6 (Lunch is included) Cost: $100.00 per couple (includes Overnight accommodations, Breakfast, Lunch, Dinner and Workshops/materials) Registration is Very limited so reserve today! Registration Deadline is April 20, 2014 To Register call Pam at 1-800-344-4867 or 412-261-6347
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MS CONNECTION: SPRING 2014
LIVING WITH MS
LIVING WITH MS
This program, which was created by a UPMC Psychiatrist Dr. Bruce S. Rabin, will teach you how stress affects your mental and physical health and the course of Multiple Sclerosis. As you know, individuals with MS experience the same stresses that other people do; however, there are additional stresses that are unique to MS patients that are related to having a chronic disease.
This eight week program is designed to help individuals find financial stability, by helping you understand ways to better manage your expenses and spending, and by helping you familiarize yourself with better budgeting methods. Additionally, this program will expose individuals to various community organizations, which are accessible for additional help and resource. Through this program, individuals will make a step toward financial independence in a more tangible and effective manner.
COOLING PROGRAM COPING WITH STRESS PROGRAM DO YOU HAVE HEAT SENSITIVITY? WE CAN HELP!
People with heat sensitivity use cooling products to cool down which helps to decrease MS symptoms. The chapter provides different financial assistance programs focused on cooling for those people who symptoms that are affected by the heat. Cooling vests come in different styles, colors, and sizes. There are also cooling accessories which include: scarfs, and wrist bands. The Western Pennsylvania Chapter offers funding for air conditioners too! Funding opportunities are available for: window air conditioners, portable air conditioners, central air conditioners and repairs for air conditioner units in homes and vehicles. Remember, there are funding time and limits, procedures and required paperwork to qualify. Call early before products run out! The summer weather will be here sooner than you may think. Order now and be prepared for the hot summer months ahead! For more information, please contact the chapter for more information at 1-800-344-4867. n
To help you achieve better quality of mental and physical health and potentially reduce your MS symptoms, you will take a journey where you will learn about stress, the use of behaviors that will improve your ability to cope with stress, and stress management techniques. To learn more about this free and voluntary program, please call Christina at the Western PA Chapter at 412-261-6347 ext 63233 or email her at Christina.Lee@nmss.org. n
TELECONFERENCES SPRING SERIES: LIVING WELL WITH MS REGISTER TODAY! NATIONALMSSOCIERTY.ORG/PAX
FINANCIAL WELLNESS PROGRAM
To learn more about this free and voluntary program, please call Christina at the Western PA Chapter at 412-261-6347 ext 63233 or email her at Christina.Lee@nmss.org. n
2014 EMPLOYMENT TELECONFERENCE SERIES Each teleconference lasts just one hour and is accessible via a toll-free number. You can ask questions or just listen to the information. Best of all, you can do so from the privacy of your own home. Participate in several calls or just the one that interests you. REGISTER TODAY! NATIONALMSSOCIERTY.ORG/PAX
4/30: Achieving Optimal Wellness: Exercise & Nutrition 5/21: CogniFitness: Memory, Attention & Executive Skills 6/11: Disease Modifying Therapies: Treatment Options
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3/20: Home-Based Employment: What You Need to Know 4/3: Social Security Disability Application Secrets
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MS CONNECTION: SPRING 2014
RESEARCH
the stalled remyelination. They have identified an enzyme that chews the HA into fragments and have shown that inhibitors of this enzyme promote remyelination. They are now trying to figure out exactly how this works, in hopes of developing treatments that promote remyelination.
THE PROMISE OF MYELIN REPAIR BY BRUCE BEBO, P H D
When I started as a laboratory immunologist more than 20 years ago, the major focus in MS research was searching for ways to turn off destructive immune attacks, which resulted in immune-based therapies that can help control relapsing forms of the disease for many people. While researchers continue to look for ways to improve the treatment of relapsing MS, the focus in MS research is shifting to finding strategies that stop MS progression and repair the damage that causes disability. This is relevant to people with all types of MS, but especially to people with progressive forms of the disease.
DREAM TO REALITY People are excited by the possibility, once only a dream, that we will find a way to repair damaged myelin. This would be important for restoring function, and many believe that re-establishing the protective myelin coating on axons may even shield them from further harm. Bruce Trapp, PhD, and his team at Cleveland Clinic have been working hard to advance the field of nervous system repair. They have shown that new MS lesions undergo natural
NATIONALMSSOCIETY.ORG | 1-800-344-4867
MORE POSSIBILITIES repair much better than older (“chronic”) ones. They also reported that the problem is not a lack of cells capable of making new myelin in old lesions, but their inability to produce new myelin. Work is now underway to figure out what the impediment is and how to jump-start the repair process. What makes this work on MS lesions intriguing is that it straddles two different parts of the brain – the so-called white matter and gray matter. The team found that chronic lesions in the white matter don’t remyelinate. But chronic lesions in the gray matter show robust remyelination – even in people living with MS into their 70s. This opens up opportunities to compare differences in the two regions and figure out how to make white matter repair itself like gray matter. In related research, Larry Sherman, PhD, and colleagues at the Oregon Health & Science University found that fragments of a molecule called hyaluronic acid (HA for short) accumulate in chronic white matter lesions and could be at least partially responsible for
Increasing evidence suggests that female sex hormones might be neuroprotective and/ or promote repair of myelin. I saw two very interesting presentations last October at ECTRIMS, the world’s largest gathering of researchers, which reported that different estrogen-like molecules could stimulate production of new myelin. Both of these projects are supported by the Society. Another strategy to repair myelin in MS is to introduce new repair cells into the system via transplantation. Of note was a presentation by investigators from Milan, Italy, who used mouse skin stem cells and forced them to become myelin-making cells. After these cells were infused into the spinal cord, they promoted recovery in mice with the MS-like disease EAE. The team found that these cells didn’t actually make myelin themselves, and are starting to identify the growth factors they release that stimulate natural repair and also reduce inflammation. More work is needed, but this type of research gives hope that this strategy may eventually help restore lost function. Updates on two repair therapies already being tested in human clinical trials were also presented. The first is called anti-LINGO. LINGO is seen in
11 neurons and myelin-producing oligodendrocytes, and blockading this protein with anti-LINGO has been shown to promote remyelination in animal models. An investigative team from Biogen Idec reported that anti-LINGO was well tolerated in people and that no negative effects were seen. This means the company will likely keep pursuing clinical development of this promising repair candidate. In other news, investigators from the Mayo Clinic are developing an agent called rHIgM22 that has been shown to promote extensive remyelination in several different animal models of MS. This agent is now in early clinical trial testing in MS. We’re not there yet, but recent and ongoing research holds the promise of uncovering new targets for stopping progression and stimulating repair. n Bruce Bebo, PhD, is the associate vice president of Discovery Research at the National MS Society. Originally published at www.MSconnection. org/blog. ADVERTISEMENT
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MS CONNECTION: SPRING 2014
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RESEARCH
MS RISKS AND TRIGGERS BY NICHOLAS LAROCCA, P H D
If we knew exactly what causes multiple sclerosis, we might be able to prevent anyone from ever getting the disease again. But even more relevant to people who already live with MS is new evidence for risk factors that may make their disease worse – or better. A lot of progress in this area was reported last October at ECTRIMS, the world’s largest gathering of MS researchers, on MS risk factors and triggers. For example, in a large population study by Dr. A.K. Hedström and team from Stockholm, Sweden, it was confirmed that cigarette smoking increased the risk for developing MS at any age, and climbed with the amount smoked. The researchers also found that quitting smoking brought that risk back to normal within a decade. The same team reported that smoking could increase a person’s risk of developing the kind of antibodies in their blood – called neutralizing antibodies – that can block the ability of interferon beta to reduce MS disease activity. Another excellent reason to quit.
WHAT’S IN THE GENES
WATCH THE SALT
We know genes contribute to MS risk, but that’s not the end of the story. Dr. H. Westerlind reported on a study by a team from Solna, Sweden, that took advantage of MS patient registries in Sweden, one of which dates back to the 1800s. They took a fresh look at how much having a family member with MS, particularly an identical or fraternal twin, increases chances of getting the disease. The researchers found that the risk of an identical getting MS if the other twin has the disease was lower than in prior reports, but still much higher than in fraternal twins. This study suggests that that the role of genes may be more complicated than previously suspected. (To read more about genetic risks, go to www. nationalMSsociety.org/genetics.)
Recent studies have pointed to salt intake as a possible risk factor for developing MS or for making mice with an MS-like disease worse. (Read more at www.nationalMSsociety.org/ salt.) But new evidence presented this week by Dr. M.F. Farez and colleagues in Buenos Aires and Boston suggest that high salt intake may also increase MS exacerbation rates and MRI-detected disease activity in people who have the disease. It will be important to do further research in this area to confirm these results in larger numbers of people and to figure out what levels of salt in the diet might be considered OK for people with MS.
The mystery of genetics and MS is driving more studies that look at how genes interact with a person’s environment and lifestyle. Danish researchers Dr. A.B. Oturai and colleagues from Copenhagen looked at a group of potential risk factors, including known MS susceptibility genes, obesity in early adulthood, previous mononucleosis and high teenage alcohol consumption. They found that each of these factors contributed to lowering the age at which an individual was diagnosed with MS. A related study suggested that preventing teen obesity in people with MS susceptibility genes may reduce their risk of developing MS.
Taken together, maybe there’s some truth to the old adage, “You are what you eat.” Follow MS research by signing up for MS eNews at www.nationalMSsociety.org/signup. n Dr. Nicholas LaRocca is a clinical psychologist who has worked in the field of MS for over 30 years and is the Society’s vice president of Health Care Delivery and Policy Research Originally published at www.MSconnection. org/blog.
WHAT YOU EAT Clinical trials are also getting underway to test whether increasing an individual’s vitamin D levels can delay the development of MS. The National MS Society is supporting a trial to see whether vitamin D supplements can reduce MS activity in people already diagnosed. Visit www. nationalMSsociety.org/vitaminD to learn more. Another emerging area of research is the gut microbiome – colonies of trillions of bacteria that inhabit our intestinal tracts, most of which are beneficial. The immune activity that occurs in the gut, and which is related to the immune system, may help dictate other aspects of health, including the activity of an individual’s MS. A lecture by Dr. O. Borbye Pedersen of Copenhagen made it clear to me that this is a very promising field of study. If we could decipher the influence of the gut microbiome, we have the potential of altering it to treat or even prevent MS.
SAVE THE DATE FOR THE 2014 LOBSTERFEST FOR MS Friday, September 19, 2014 $75 per person Bavarian Hall, Altoona Your choice of a whole steamed Maine Lobster or a 10 oz. Filet Mignon. Both meals include a generous portion of steamed shrimp. For more information visit our website at nationalMSsociety.org/PAX.
14 WAYS TO GIVE
BAD FOR A GOOD CAUSE
MS CONNECTION: SPRING 2014 thinking of a joke,” Tony says. “It was a creative process that grew into something bigger.”
WITH A LITTLE HELP FROM THEIR FRIENDS, JOHN AND TONY CAME UP WITH A VERY UNIQUE DO IT YOURSELF FUNDRAISING IDEA. “Obviously, MS is a serious matter, but this situation really sums up John’s endearing personality and why he has such a close network of friends and family,” says John’s good friend Tony Cerame. “He knew it wouldn’t be easy for us to take the news, so he disarmed the situation by continuing to be who he is – one of the funniest and most genuine friends we have.”
A CREATIVE PROCESS
John and Tony wanted to do something to support efforts to end MS. So they put their heads together, and with a little help from their friends, came up with a very unique Do It Yourself (DIY) fundraising idea: Going to a concert that is so bad, you should be paid to attend … sober. “Coming up with the idea for the fundraiser, though, was a lot more than one person
and even going as far as getting spray tans for progressively higher amounts of support pledged. “The spray tan was totally weird, and I don’t know how people repeatedly get those things,” Tony says. “That said, it was one of the funniest things I ever did.” On the evening of the concert, August 3, 2013, they were in for a treat. Because of their getups, they got a lot of attention.
When St. Louis resident John Simon was diagnosed with multiple sclerosis in 2008 at age 29, he decided to stay positive, be himself and keep his sense of humor.
“The first 45 minutes or so were completely surreal,” John says. “We were rock stars.”
BACKSTREET BOYS 4 MS JOHN SIMON, JASON STRUTTMANN AND TONY CERAME In 2012, they tested the waters with one of the worst concerts they could think of – Creed. Tony proposed seeing the group after hearing that the lead singer was in St. Louis to perform at a local casino. “We sat and wondered just how terrible that show would be,” John says. “Tony mentioned trying to get people to pledge money to make someone sit through that pile of garbage for a good cause. Choosing MS was a pretty easy decision.”
SPRAYTANS FOR MS When the friends learned the Backstreet Boys were coming to town with one of the cast members on MTV’s “Jersey Shore,” they figured there was no question they had to do it again. So Tony, John and their friend Jason Struttmann offered incentives with fundraising tiers, such as shaving and dyeing a chinstrap beard, frosting hair tips,
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“Can I say it wasn’t torture and still convince people to send us to one of these next year?” Tony wonders. “The music certainly didn’t help, but it wasn’t bad enough to ruin a couple of great nights with some great friends.” What they called Creed 4 MS and Backstreet Boys 4 MS turned out to be a winning combination, with the friends raising a total of $4,498 in 2013.
A DEEPER MEANING Of course, taste in music is subjective. Although they received a few negative comments from some avid Creed fans last year, this year’s feedback was mostly positive.
“CAN I SAY IT WASN’T TORTURE AND STILL CONVINCE PEOPLE TO SEND US TO ONE OF THESE NEXT YEAR?” TONY SAYS.
we’ve made a number of new friends along the way.” Even though their fundraisers began as a fun way to support the cause, it now means much more to these young men. “The most important feedback is how many people contact me and tell me about their experience with MS,” John says. “I’ve become much more aware of how many people the disease actually affects.” Tony believes the key to a successful DIY fundraiser is to think of something that is funny and will keep people engaged through the entire process, such as fundraising tier incentives. “The basis for our success has been finding a way to make things fun for the donors and keeping them involved right to the end, when we go to the show,” Tony says. “We found something different, and while it may not appeal to everyone, the fact that it’s unique drives its success.” Learn how to start your own DIY event at www.doityourselfMS.org. n Originally published in the Gateway Area Chapter’s MSConnection newsletter. 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. • • • • • • •
“Our friends have been very supportive and truly excited to be a part of it,” Tony says. “And
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!
16 MONEY MATTERS
WHERE TO FIND EMPLOYMENT HELP BY STEVEN W. NISSEN, MS, CRC
Are you considering changing jobs? Have you been out of the workforce, but are thinking about returning? Do you have questions about disclosure in the workplace or how to accommodate symptoms on the job?
CALL AN MS NAVIGATOR An MS Navigator can address many of your employment-related questions and refer you to helpful resources, including employmentrelated publications and videos. Call the Society at 1-800-344-4867 and visit www. nationalMSsociety.org/employment.
JAN CAN HELP The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy that can provide technical assistance and support regarding accommodations, the Americans with Disabilities Act, disclosure and self-employment for people with disabilities. Contact JAN at 1-800-526-7234 or visit www.askJAN.org for a wide variety of resources and publications.
MS CONNECTION: SPRING 2014
IN YOUR STATE Each state has a vocational rehabilitation agency whose goal is to assist individuals with disabilities to gain and maintain employment. For a full listing of vocational rehabilitation agencies, visit askjan.org/cgi-win/TypeQuery.exe?902.
ONE-STOP SERVICES The purpose of local one-stop employment centers is to assist job seekers, with or without disabilities, in finding employment. However, if you choose to self-identify that you are living with MS, the office may be able to provide some additional support services. To find your closest center, visit www.servicelocator.org.
TARGETED RECRUITMENT Several online resources feature employers who are actively recruiting qualified people with disabilities, including: • Equal Opportunity Publications Career Center - www.eop.com/career.php. • GettingHired - www.gettinghired.com. • National Business & Disability Council - www.viscardicenter.org/services/nbdc. Working with MS is possible and you don’t have to do it alone. Get connected to stay on top of your employment options. n Steve W. Nissen, MS, CRC, is the Society’s senior director of Employment & Community Programs.
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GET INVOLVED!
BECOME A MS VOLUNTEER! Do you have what it takes to be a stellar volunteer? Please join us for our Walk MS event. We are a staff of few, so our volunteers are important to us and we get closer to a cure through our strong and valuable volunteers. Do you have free time during the week? Volunteer in the office! We need volunteers who can come during normal business hours (Monday through Friday 9am-5pm) to assist in calling participants and donors, helping with mailings, data entry and much more! What about over the weekend? We are always looking for day-of-event volunteers to cheer on our walkers help with registration, rest stops, and lunch volunteers for our Walk MS: Pittsburgh at Point State Park on Saturday, April 12th, 2014. Are you medically certified? We need medical volunteers to care for walkers before, during, and after the event. We also have volunteer needs throughout the Western PA region for our 13 walk sites, please contact Susan at susan.cook@nmss.org or call the office 412-261-6347 for more information or register online today at walkMSwesternPA.org. n
ABOUT FIFTYTWO IN FIFTYTWO! Simply put, it is 52 marathons walked within 52 weeks. Yep, 1,362.4 miles over the course of a year. Starting Jan 1st, 2014, John will walk this distance as part of his personal Awareness Campaign for Multiple Sclerosis and the MS Community. The FiftyTwo IN FiftyTwo Concept FiftyTwo IN FiftyTwo is exactly this…52 weeks 52 marathons 1,362.4 miles 2,500,000+ steps FiftyTwo IN FiftyTwo exists to create Multiple Sclerosis awareness, demystify, overcome, provide solutions for MS symptoms, and raise funds for MS community members in need of heat intolerance assistance. This will be accomplished through one of the human abilities MS takes away – MOVEMENT. 100% of all donations/funds go directly the Western PA National MS Society. ONE step for everyone in the world living with MS Please visit his website: fiftytwoinfiftytwo.org for up to date blogs, live twitter feeds and how to donate:
18 RUN FOR A REASON
2014 DICK’S SPORTING GOODS PITTSBURGH MARATHON There is still time to Run for a Reason at the 2014 Dick’s Sporting Goods Pittsburgh Marathon! Thinking about running in the 2014 Pittsburgh Marathon?! GREAT! Do something good for yourself and for your community by Joining the MOVEMENT! Join our Run to Stop MS team, commit to help raise critical funds for those living with MS and enjoy FREE registration for the 2014 Dick’s Sporting Goods Pittsburgh Marathon on Sunday, May 4th. Whether you are looking to run in the full marathon, half marathon, 5k or as part of a relay team – we want YOU to Run for a Reason! As a member of the 2014 Run to Stop MS Team, we are committed to helping you reach your mental and physical goals. We will provide you with all of the tools and support you need to meet and exceed your fundraising goals, while our seasoned running coach, Ellen, will host group training runs and is there to support any other
MS CONNECTION: SPRING 2014
training needs you may have. To learn more or to register with us visit our webiste at nationalMSsociety.org/PAX. If you have questions please contact Susan at susan.cook@nmss.org or 412.261.6347 or Coach Ellen at Ellen.Stewart@ nmss.org. Don’t miss out! Register today, this event sells out! n ADVERTISEMENT
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MS CONNECTION: SPRING 2014
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WALK MS
MAKE A DIFFERENCE. BECOME A PART OF WALK MS TODAY!
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Every step. Every Person. Every second spent and dollar raised. They all add up to an experience unlike any other: Walk MS. This is our time to unite and stand strong. TOGETHER WE WILL CHANGE LIVES, CREATING A WORLD FREE OF MS. Walk MS is more than just a fundraising event, it’s a celebration for the entire community. The event itself creates a hope-filled and fun atmosphere for everyone affected by multiple sclerosis while generating a greater awareness of MS in the public at large. Families are drawn closer together, co-workers are united for a greater good, and people gain a better understanding of what MS is and how close we are coming to achieving a world free of this disease. Register now, connect with other and start fundraising today! You’ll move. You’ll be moved. The 2014 Walk MS Campaign takes place in April and May throughout Western PA. Visit walkMSwesternPA.org to register for a Walk MS near you! For questions or help registering please contact Hannah at 412-261-6347 or email Hannah.Spear@nmss.org
GOLF MS: SAVE THE DATES Erie Golf Outing August 22, 2014, Riverside Golf Course Annual Anne Barnes Memorial MS Golf Tournament September 4, 2014, Iron Masters Country Club MS Golf Tournament, Colleen McGuire Memorial September 16, 2014, Laurel Valley Golf Club
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22 YOUR CLINICAL CONNECTION Welcome to ASK THE THERAPIST. This column features reader’s questions pertaining to multiple sclerosis that are answered by licensed therapists at Niagara Therapy, LLC. While our outpatient clinic serves a variety of diagnoses, we specialize in neurological disorders such as MS. It is our hope that this column will be informative and insightful for individuals with MS. Topics could include adaptive devices, energy conservation techniques, work situations, exercises, and therapy strategies. Your questions will be answered by occupational therapists, physical therapists and speech language pathologists! In an attempt to be a comprehensive resource for therapy information, readers will be able to send us their personal questions for any matter dealing with therapy or daily life. Simply e-mail your questions to shellylynn-ot@juno.com. Signed, Your Niagara Therapists 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. If you would like to speak to a therapist or schedule an appointment at Niagara Therapy, LLC please call 814-464-0627. n
MS CONNECTION: SPRING 2014 ADVERTISEMENT
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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.
NEW IN 2014!
MUSIC FOR MS!
ANNOUNCING THE INAUGURAL “MUSIC FOR MS” ROOTS MUSIC FESTIVAL.
The festival will take place on August 16, 2014 at the main stage of Hartwood Acres and will include major local acts. Bill Deasy of the Gathering Field, The Weedrags and City Dwelling Nature Seekers and national acts The Town Pants and Humming House. Michele Michaels from WDVE will MC the event. All proceeds will benefit the Multiple Sclerosis Society of Western PA. Please explore this site for more information on how to purchase tickets and become a sponsor of this worthwhile event. We are helping people with MS to “Move Forward Through the Power of MuSic.” Please check http://musicforms.org/ to buy your tickets to this wonderful event! n National Multiple Sclerosis Society’s United Way workplace giving designation code for Allegheny County only is: 898