MOVING TOWARD A WORLD FREE OF MS Summer 2011• Issue 2
Pittsburgh Steelers Defensive End Nick Eason rides to Create a World Free of MS.
Western Pennsylvania Chapter The National MS Society, Western Pennsylvania Chapter uses funds raised from Bike MS: Escape to the Lake in different ways. Money goes to support research, but also to provide local programs to support people living with MS.
INSIDE THIS ISSUE:
In Steeler Nation alone, 7,500 On June 11, instead of suiting up in Pittsburgh Steelers’ Nick persons are affected by this disease. his black and gold, Steelers’ Eason takes an offensive Think Bike MS: Escape to the Lake defenseman Nick Eason climbed on approach to fight MS is only fit for a Super Bowl his bike, fasten his helmet and pedaled Champion? 150 miles to tackle Multiple Sclerosis. He participated in the National Multiple Think again. Eason’s athletic abilities on the Sclerosis Society’s Bike MS: Escape to the Lake football field are vastly different compared to event because of his personal connection to the the skills needed to ride in an event like this, cause. which proves that with the right training schedule and determination, anyone can be a Nick says, “My mom was diagnosed with MS champion for MS. While training for in 1997, so it is a disease that I am very familiar professional football, Nick’s main concern is with and I’ve witnessed what living with MS can strength, but when preparing for the upcoming mean. Locally, the Bike MS: Escape to the Lake 150 mile ride, his new focus will be on ride is the largest fundraiser supporting local endurance. According to Nick, “I think being programs and services and national research for a professional football player is going to make MS. I enjoy being active with the Society and participating and finishing more challenging. I encouraging others to ride, donate or volundon’t usually ride a bike for football and power teer because it is an opportunity for me to help lifting isn’t going to help me get up others who suffer from the same disease as my Continued on Page 16 mom.”
Living with MS Page 4
Home Help Page 8-9
MS Champions Page 18
Walk MS Page 17
1-800-344-4867 Publication of the National Multiple Sclerosis Society Western Pennsylvania Chapter 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 Chairman David Strassburger, Esq. Executive Vice-Chair Sandra L. Bettor Treasurer Douglas Miner, Esq. Secretary Pamela A. McCallum, Esq. Chapter President Colleen M. McGuire Newsletter Editor Lauren DiMaria Newsletter Designer Jennifer Staab Board of Trustees Ellie Bernstein Robert S. Bernstein, Esq. John C. Brown, Jr. Scott Conley Roberta Sciulli-Carlson JoEllen Lyons Dillon, Esq. Arthur J. DiDonato, Jr. Franco Harris Rock Heyman, M.D. Rich Hixon Jerry Hogenmiller, Esq. Joan Campasano-Hoover Geoffrey Kelly Robert J. Lewis David J. Malone Carleen McGann David Minnotte Jane Moriarty, Esq. Robert Nitzberg, M.D. Susan Fuhrer-Reiter, Esq. Ken Rice Thomas Scott, M.D. Lou Weiss Thomas D. Wright, M.D. Samuel Zacharias Members Emeritus: Aleta Whitaker 2
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If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at www.nationalmssociety.org or 1-800-FIGHT-MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. “The mission of the National Multiple Sclerosis Society is to end the devastating effects of multiple sclerosis. “ © 2011 National Multiple Sclerosis Society, Western Pennsylvania Chapter
western pennsylvania chapter offices Western Pennsylvania Chapter, 412-261-6347 1501 Reedsdale St., Suite 105 Pittsburgh, PA 15233 Keystone Branch, 814-696-1017 506 Third Avenue, Duncansville, PA 16635 Erie Branch, 814-464-2900 2115 West 8th St., Erie, PA 16505 Serving 26 Counties in Western Pennsylvania: Allegheny, Armstrong, Beaver, Bedford, Blair, Butler, Cambria, Cameron, Clearfield, Crawford, Elk, Erie, Fayette, Forest, Greene, Indiana, Jefferson, Lawrence, McKean, Mercer, Somerset, Cambria, Venango, Warren, Washington, Westmoreland.
to get used to having MS. Loved ones can help by giving their diagnosed friend or family member permission to deny and therefore cope.”
Denial is not a river in Egypt. And it actually has a place in helping people absorb a diagnosis of MS.
However, said Dr. Giesser, denial doesn’t work long-term. “You have to move past denial in order to treat and make plans,” she cautioned. “If instead of accepting your diagnosis, you believe the doctors made a mistake, you might not avail yourself of appropriate therapy for both disease and symptom management.”
Denial allows people to take time to get used to a new situation and not focus on fears of what might happen down the road. “Denial gets a bad rap,” said David Rintell, EdD, a psychologist at Partners MS Center at the Brigham and Women’s Hospital in Boston, Mass., “but it can be very useful and is sometimes necessary.”
To develop a sensible perspective, it’s important to get as much information as possible. “Find a neurologist you can work with, who allows you to be active in your own care,” Dr. Giesser advised. “It’s less scary when you feel empowered.”
Denial is a very basic defense mechanism, explained Barbara Giesser, MD, clinical director of the UCLA MS Program. “In the process of adapting to chronic illness, denial can be a useful first step in the process of acceptance.”
Dr. Rintell also suggested speaking with other people with MS or a professional with relevant experience. “After the initial shock, most people learn that MS can be a difficult illness, but they realize that they will be OK with it. Being optimistic turns out to be realistic.”
In fact, said Dr. Rintell, people who are unable to use denial may become disabled by anxiety. “Hopelessness is destructive—it reduces motivation, and makes us less likely to adhere to treatment,” he said. “I encourage people to let go of the worst-case scenario and continue to live life, go to work, enjoy relationships and take some time
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NEWLY DIAGNOSED
THE BENEFITS OF DENIAL
Wii AND ME
By Jonathan Rubin
Eighteen years ago, when I was 24, I lost something very important. I lost the ability to compete. I had played competitive sports my entire life. So much so I never thought what life would be without them. They were just part of me. But my competitive ability was taken away by my first major MS attack, one that left me dizzy, weak and bedridden (temporarily) for the first time in my life.
While at the University of California at Santa Cruz, I frequently played with members of the Banana Slugs Division III, but never went out for the team — I think due to a youthful desire to be more intellectual, less jock. I played on every intramural team, in every league, in every pickup game, whenever I had the opportunity to join, and would spend hours and hours just running around an immense field overlooking the Pacific Ocean chasing and kicking a small white ball. It was pure freedom. It wasn’t until the winter of ’92–’93 that I realized just how important it was to me. After my first MS attack, it took me five months to get back on a basketball court and a year to even kick a soccer ball (my legs were heavily affected). It was probably 18 months before a friend talked me into trying a pickup soccer game. I was a little slower, a little shakier, a little weaker, but it was soccer, by golly, and I loved it. However, after many ups and downs and all arounds, my MS has shifted into secondary-progressive. I now walk with a cane and can only imagine playing in an actual soccer match.
Soccer was my primary passion, with tennis and hockey following close behind. I was taught the “beautiful sport” of My competitive ability soccer first by Africans was taken away by my Tennis is a similar story. It was who lived in our an early casualty of MS. Running first major MS attack, made me dizzy and confused, apartment complex in Madison, Wis., when I one that left me dizzy and neither of which is conducive to was six. Then, when my playing quality tennis. weak. family moved to England for three years, I learned another version, It is difficult for me to even break a sweat English football, which involves less these days, let alone get a true aerobic intricate passing and more rough tackling and workout. The muscles in my legs quit after big kicks downfield. Then, back in the good two minutes of stationary bike riding and ol’ U.S. of A., I played youth and varsity high after 10 on a rowing machine. If I work out for school soccer. I was not great, but always 15 minutes, it becomes next to impossible for good, always in the game, ready to play, an me to walk out of the gym. I enjoy yoga, but able teammate. my muscles buckle with any pose that involves the legs. 4
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did with tennis. But I’m ready to start the PGA tour with Woods and Mickelson. Who wants to caddy?
Thanks to Wii, I can play golf, Thanks to Wii, I can and I am once again a champion play golf, and I am (level 2000) tennis player. I can once again a champion groundstroke endlessly, connect on every overhead tennis player. slam and whip forehand winners crosscourt. I can serve big, rush the net, and still backpedal to the baseline. I can sweat like a pig again. I am, in a sense, complete.
Jonathan Rubin, who lives in Madison, Wis., is currently ranked 5,024 in the world on Wii Grand Slam Tennis and hopes to be #1 by spring.
My experience reminds me of the scene in the movie Avatar where the wounded veteran, who has lost the use of his legs, has his mind put into the body of an avatar. He walks a few trembling steps, and then starts running and running and running. He will not stop. It is impossible to imagine what it is like to not be able to run until you can’t. I haven’t yet tried soccer and basketball on the Wii and I’m not sure that Nintendo can capture the joy of those sports quite as well as they
Affording Wii One of Wii’s drawbacks is that it’s not cheap. It usually retails for $250 and up, depending on model, accessories and games, although with a little Internet research, you may uncover lower prices. Or call us to see if any communal Wii events, such as bowling tournaments, or classes on using a Wii, are coming up in the area.
National MS Society’s United Way workplace giving designation code for Allegheny County only is:
898 Or call your local United Way office to check on the code number for your Photo Credit: county. Ed Kashi TOLL FREE NUMBER 1 800 344 4867
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LIVING WITH MS
Which brings me to the present, to this Christmas actually, when my family and I (my two sons are jocks too — go figure) bought the Wii Fit Plus game station from Nintendo.
WELCOME TO YOGA Yoga can be • beneficial to people with MS as long as they find the appropriate class, teacher or video. More and • more MS experts note that yoga, with its emphasis • on relaxation, breathing, stretching and deliberate movements, is a good choice of exercise. How can someone with MS find the right type of yoga, the right class, and the inspiration to try it? Yoga for MS? Yes, give it a try! But, as with any exercise program, check with your physician first. A number of Society chapters offer yoga classes or may be able to help you find yoga resources in your area. To get the most out of a yoga class: • Look for an instructor who has experience
•
The teacher should have at least 10 years of experience unless the teacher also has a medical or physical therapy background. If you use a cane or walker, try a class for seniors. Or try a class offered for people with special needs, such as arthritis. Many yoga stretches and poses can be done sitting down. Again, take the time to explain your MS to the instructor before taking a class. Stay close to home. A class more than 15 minutes from home is likely to fall off your schedule. If no class is close enough, try videos at home (see Resources). Consider enlisting someone to do yoga with you. It may help you stay disciplined. Your MS support group may want to end a meeting with a yoga tape. Although groups are great, beware of peer pressure during class. If something doesn’t feel right, stick up for yourself, and stop. Sometimes your mind may be holding your body back. But your body may also be giving you signals to stop, which your mind wants to ignore! So, when in doubt, stop. If you feel pain, STOP!
Have realistic goals. Yoga won’t cure MS. But teaching people with MS. Call your it can help you live more comfortably in your chapter about classes or referrals own body. (1-800-344-4867). • If you can walk without assistance, try a regular class, but ask what will be expected Transp or t U, Inc . and explain your condition. Yoga classes are often offered at YMCAs and YWCAs, Accessible Transp or tation health clubs, gyms, weight-loss studios, (doc tors appointments/ and, of course, in yoga studios. Most shopping/social appointments instructors are willing to learn about and more) MS and will adapt poses with props A Wes tern PA Based spcialized such as pillows, or by using a chair, the transp or tation company with a wall or the floor to assist balance. If the focus on p ersonalized trips. instructor doesn’t really listen or provide individualized attention, this is the wrong place. Call today to schedule a trip or • Ask about an instructor’s experience. The inquire about our ser vices! Indian names don’t mean nearly as much as 412. 281. 8350 the length of time the person has taught. 6
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VIDEOS/DVDs
BOOKS
YOGA for MS: Pathways Exercise Video for People with Limited Mobility This yoga-based exercise program is suitable for people with full or limited mobility. (But you must be able to get up and down from the floor to a chair.) It includes breathing and relaxation techniques. 48 minutes.
Yoga and Multiple Sclerosis: A Journey to Health and Healing by Eric Small and Dr. Loren Fishman. This new book provides descriptions of adapted poses along with explorations on their effects, advantages and contraindications. It also includes recommendations on postures for fatigue and spasticity. To order, visit http://www. demosmedpub.com or call 800-532-8663 for further information.
YOGA for Arthritis and Related Conditions Don’t let the title confuse you. This video has been used widely by thousands of people with MS. It shows five people, one of whom has MS, with varying levels of ability doing poses at different levels. It is also an appropriate video for those in wheelchairs. It includes breathing and relaxation techniques and the DVD includes a Spanish version. 52 minutes. Both videos are by Shoosh Lettick Crotzer. To order, visit http://www.mobilityltd.com or call 800-366-6038 for further information. Yoga with Eric Small Eric Small is a well-known yoga teacher who has been one of the most influential proponents of yoga for MS. He was diagnosed with relapsing-remitting MS almost half a century ago, and has been teaching yoga for many of those years. To order, call 310-479-4456 or write the Southern California Chapter of the National MS Society, 2440 S. Sepulveda Blvd., Suite 115, Los Angeles, CA 90064. 100 minutes.
The Western Pennsylvania Chapter may have an adapted yoga class near you! Pittsburgh Altoona New Castle Mars Erie Call 1-800-344-4867 to learn more!
Are you an older adult?
Contac t Silver Sneakers about their e xercise program and to locate a facilit y near you! w w w. silversneakers.com Toll -free: 888 - 423 - 4 632
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WELLNESS
YOGA RESOURCES
Are You Thinking About Home Modifications? It’s that time of year when folks are thinking about making home improvements, especially now that the weather is getting nicer and folks want to spend some more time outdoors. The Western Pennsylvania Chapter offers financial assistance to folks with MS with a Home Modification request. The Chapter pays a limited amount of funds for permanent ramps, indoor/outdoor handrails, grab bars in the bathroom, handicapped style commodes, walk-in style showers, wheelchair accessible showers, and widening of doorways. We partner with many community agencies who may be able to offer financial support for your project that you have in mind. We highly encourage you to do your homework to get three (3) professionally written estimates, to check on their references, and to check with the Better Business Bureau. We are able to work with you if you would like to do the work yourself with family and friends who would volunteer their labor on your project. For more information please call Brian Sibenac or Mary Lee Jackson at 1-800-344-4867.
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By Al Tainsky
3. Have him or her agree to give one month’s notice—and do the same. 4. Don’t hire an alcoholic. (I expect my caregivers to be clean and sober in my home.) 5. Keep food separate. (Sometimes we eat together, sometimes we don’t.) 6. The caregiver’s room should hold all the caregiver’s goods. (I have no room for storage and nothing should hinder my movement in my home.) 7. No sleepovers and no inviting friends over without permission. (I need night coverage and that is non-negotiable.) 8. Keep your computer and printer for your personal use only. Respect, honesty, compassion, compatibility and 9. If a caregiver steals, lies or cheats, make a plan civility are core ingredients of a successful carefor coverage before firing the miscreant, so giving relationship. But a sense of humor and a you’re not left on your own. soupçon of soul don’t hurt either. 10. Don’t surrender control of your life to anyone. Need help? Call a friend, call a I was diagnosed with MS in 1987, but I trace the relative, call the Society, call the closest disease back to the 1950s and a summer so hot it Independent Living Center and if necessary melted the tar on Anderson Avenue in the Highcall the police. bridge section of the Bronx. Al Tainsky was a professional journalist and someFor nigh on 20 years, I have hired, fired and lived time writer of comedy for television when he was with caregivers. I call my current live-in caregiver diagnosed with MS 24 years ago. He continued to Mr. Wizard. His technical and computer skills live independently and to write articles for Moare remarkable. He has a sense of humor and he mentum magazine, Real Living with MS, and other taught Sunday school for about 14 years. His younger sister is developmentally disabled and the disability publications. He died of a heart attack in February shortly after completing this article. We love he feels for her shows a man of substance. will miss his smarts and his spirit. Here are a few of my tips to finding your own Mr. Wizard.
Wondering how to afford a caregiver?
1. Have applicants supply the names, addresses and phone numbers of three personal or work references. 2. Hire someone with a clean driving record.
Call 1-800-344-4867 to talk to an MS Navigator®. Also go to nationalMSsociety.org for the brochure, “Hiring Help at Home.”
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MONEY MATTERS
TEN TIPS FOR HIRING HOME HELP
NEWS
Medicare “Improvement Standard” challenged For many people with MS, physical, speech or occupational therapy may be essential in preventing their abilities from deteriorating. However, many of these folks have been denied medically necessary rehabilitation services that they are eligible for through Medicare because of something called the “improvement standard.” The standard actually violates Medicare’s own official regulations, which say that “the restoration potential of a patient is not the deciding factor” for coverage and that therapies that help prevent physical and cognitive deterioration or maintain optimal functioning, even if improvement is not expected, are to be covered. This past January, a class- action lawsuit was filed in the U.S. District Court in Vermont, with the National MS Society as the first national health organization named plaintiff, and subsequently joined by the Alzheimer’s Association, United Cerebral Palsy, Parkinson’s Action Network and Paralyzed
Veterans of America. The lawsuit seeks to assure that a person’s “improvement” status is not a basis for denying ongoing therapy services. The outcome will be reported in “Government News” at www.nationalMSsociety. org/advocacy.
Potential anti-spasticity treatment boosted by the Society’s Fast Forward program Key early-stage research on an oral treatment for spasticity, the painful and debilitating muscle spasms associated with MS, is underway at Canbex Therapeutics. The UK-based company received a $2.8 million Translation Award in March, 2011, from the Wellcome Trust, a global charitable foundation, to support this research. The work is being led by David Baker, PhD, an MS investigator under the National MS Society’s Promise: 2010 initiative. The Canbex spasticity program has been supported by the Society’s Fast Forward initiative to move this potential therapy toward clinical trial faster.
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Welcome to digital Momentum!
Momentum, the National MS Society’s flagship magazine, is now available online at www.nationalMSsociety.org/magazine in a fully digital edition with plenty of bonus features. It includes all content from the print edition, including advertisements, and allows you to click on live hyperlinks, comment on articles and respond to reader comments, download whole issues as PDFs, print pages and share articles via e-mail, links or by posting to social networks. Digital Momentum is also available for free from iTunes and the Android Market. The app includes the magazine, the latest Society news, our Twitter feed and videos.
If drinking a glass of worm eggs could help with MS, people might just grimace and swallow. Two recently published studies explore whether infection with relatively harmless parasitic worms, called helminths, can reduce disease activity. The idea stems from the “hygiene hypothesis,” which suggests that an early lack of exposure to infectious agents may cause the immune system to later overreact and trigger MS. In the first phase of a clinical trial (HelminthInduced Immunomodulation Therapy, or HINT) supported by the National MS Society, John Fleming, MD, and colleagues at the University of Wisconsin, Madison, administered a drink containing helminth eggs to five people with recently diagnosed MS. The participants were then monitored with MRI scans. Study results, published in Multiple Sclerosis Journal 2011 Mar 3, showed that participants tolerated the helminth treatment well and neurological symptoms did not get worse. However, the small number of participants and the study design made it difficult to draw firm conclusions about the treatment’s effectiveness. The second phase of this study is now under way. In a previously reported Argentine study, Jorge Correale, MD, and Mauricio Farez, MD, at the Institute for Neurological Research, Buenos Aires, followed the disease course of 12 people with MS who ingested helminth eggs. They showed fewer relapses, better disability scores and lower MRI activity compared with uninfected people. In a follow-up study published in Journal of Neuro-immunology 2011 Jan 28, the researchers report that in four infected participants who required anti-parasitic treatment, MS symptoms and disease-related MRI activity subsequently
increased. However, again, because the study was so small, further studies are needed to establish a direct link between parasites and improvements in MS.
Update on oral BG-12 In April, Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced relapses in people with relapsing-remitting MS in a phase III trial. The results of another study comparing BG-12 with glatiramer acetate against placebo are expected later this year.
American Academy of Neurology meeting The American Academy of Neurology’s annual meeting, held April 9-16 in Honolulu, offered promising results about oral MS medications, treatment of symptoms and better understanding of mechanisms involved in the disease. For example, the first reported results of a phase III trial of oral laquinimod suggested it could significantly reduce disease activity and disability progression, while appearing to be well-tolerated. For more news from the AAN conference, go to www.nationalMSsociety.org/AANews.
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RESEARCH
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WAYS TO GIVE
Family Night With the Curve
Date: Friday, July 22, 2011 Time: Gates open at 5:45 pm Buffet starts at 6:00 pm Game time is 7:05 pm Location: Jerry Uht Park 110 E. 10th St. Erie, PA 16501 Program Cost: Person with MS: Free Guests: $15.00 per person Price includes reserved seating, food ticket for the buffet dinner, and a ball cap! Registration Deadline: July 15, 2011 Tickets are limited so please register early. Tickets can be picked up at the Will Call
FAMILY NIGHT at the Ball Park
Name: _______________________________________________________________
) __________
Address: _____________________________________________________________ City: _____________________ State: ______ Zip: _______ Phone:(
Email: ________________________________________________________________
Person(s) with MS (Name)________________________ free = ________$0___________
Total:____________
Number of Guest Tickets _______ X $15.00 = __________________ Number of Wheelchair Seats________ Number of Limited Mobility ___________(Can NOT do steps)
Mail this registration form by July 15, 2011. Tickets can be picked up at the Will Call Window on game night.
Make checks payable to: National MS Society
Mail to: National Multiple Sclerosis Society Erie Branch 2115 W. 8th St. Erie, PA 16505
Questions: Please contact Mary Lee at 814-464-2900
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Mud. Lots and lots of mud. In your hair, your eyes, your nose. In front of you dozens of mudcovered people scream and yell. Behind you, more mud-covered people scream and yell. From head to toe, you’re caked in mud—filthy, dirty mud—except when you’re sprayed by the giant water hoses. This is Mud Run MS. It’s a 10K obstacle course through, yep, mud. “You slide down a hill of mud into muddy water, you go through netting into mud, you climb a mountain of mud,” said Sarah Klein, the Society’s national senior event manager. It’s dirty beyond belief. And it’s a huge hit. Last year, the event raised nearly one million dollars. The first Mud Run MS debuted in 2009 in Jacksonville, Fla. Hundreds of people showed up, with proceeds exceeding $200,000. Encouraged, the Society is expanding Mud Run MS in partnership with the event creator, The Original Mud Run, across the country. In 2010, events debuted at three more chapters, and this year, eight are already scheduled (Portland, Ore.; Salt Lake City, Utah; Winter Park, Colo.; St. Louis, Mo.; Jacksonville, Fla.; Raleigh/Durham, N.C.; Philadelphia, Pa.; and the Twin Cities in Minn.). More chapters will be joining.
The event is not without its organizational challenges. “It can be hard to find the right property. We need somewhere we can dig up huge pits and install semi-permanent concrete structures,” Klein said, not to mention parking for two or three thousand people. But thanks to generous land owners who donated various parcels, the events thus far have all managed to find a place. What kind of person likes getting covered in mud head to toe? According to Klein, this event attracts a broad range of participants, from military, police and fire personnel, to people who just think it’s cool and want to try it. “The idea of splashing in mud for a good cause is very appealing,” she said. “Chapters have been finding that most participants are people new to the Society,” Klein noted. She thinks the spontaneity of the event has something to do with its appeal. “Someone who’s generally fit can just show up and do it.” But the festive atmosphere of fire trucks, food, sponsor tents and lots of dirty people having loads of fun probably helps, too. To find out more, visit mudrunMS.org. Photos courtesy of the Minnesota Chapter.
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WAYS TO GIVE
DOWN AND DIRTY FOR THE CAUSE
NICK EASON FROM PAGE 1 this will meant a great deal to his team mates, a big hill. I am not a small guy fellow riders, and those living with MS. - I am 300+ lbs which is not what you think of when you “I think a lot of people were interested in seeing if I could finish! But on the other hand, I know picture a cyclist! I probably that people look up to professional football have 200lbs on Lance.” players, especially Steelers as leaders in this community. I want to call on my fans to give To begin training, Nick back and help out an organization I care greatly purchased a stationary bike about” says Nick. from G&G fitness and rides at home while watching TV and just recently went on a 30mile ride in Atlanta, Georgia. Just like everybody else, Nick’s biggest obstacle right now is time. With family, work, volunteering and other commitments, Nick has had to squeeze his training into his busy schedule. His ability to do
You can still donate to the 2011 Bike MS: Escape to the Lake event. Or, join us on July 23 & 24th for the Keystone Country Ride or September 17th in Cook Forest and accept your own challenge! Visit bikems.org to learn more!
Sam’s Club raises nearly $1.2 million dollars to benefit people living with MS. After six short weeks of fundraising in over 600 clubs across the country, and at the conclusion of an intense MSthemed dodge ball tournament at their annual meeting, Sam’s Club presented a check to the Society for nearly $1.2 million. Making the most of grass roots fundraising techniques that included donation jars, caramel apple and hot chocolate sales, and MS bracelet and sneaker sales in club parking lots, Sam’s Club employees rallied together to make a significant financial contribution to the MS movement. Locally, Sam’s Club donated over $17,000 in Western PA! On behalf of the National MS Society and people with MS everywhere—thank you Sam’s Club! Sam’s Club Dodge Ball Tournament
16 JOIN THE MOVEMENT: nationalMSsociety.org
T hank you to ever yone who c ame out to one of 14 Walk MS event in Western PA this year! Highlight s from some of the 2011 Walk Event : • Walk MS: Pit t sburgh wa s he ld on April 10 th, which felt like the only warm, clear day in April! Nearly 3, 50 0 pe ople c ame out to Point St ate Park to kick of f our 2011 Walk MS C ampaign. With almost $ 40 0,0 0 0 raise d, we’re close to our goal! • We had our f irst Walk MS event in G rove Cit y this year! O ver 20 0 pe ople were in at tendance and have raise d almost $20,0 0 0 so far. T hank s for the supp or t! • Erie’s 2011 Walk wa s full of hear t , de dic ation & determination – we had over 40 0 p e ople come out despite the const ant rain, wind & cold! Ef for t s were endless and the suppor t wa s superb! A big huge thank you to ever yone who c ame out and Joine d the Movement in Erie on May 15th! • Bradford ’s 2011 Inaugural Walk MS is shaping up to be a huge success – we have over 10 0 pe ople pre - registere d and almost $3,0 0 0 raise d. T he energ y for the MS Walk in and around the Bradford communit y wa s ele c tric ~ we are really se eing the suppor t down ever y avenue! Looking for ward to this success and many more to come! • O ur D ub ois Walk MS wa s great this year! With a new walk st ar t loc ation! Kudos’s to Trea sure L ake Proper t y O wners for helping to have over 30 0 walkers this year! • Although the day st ar te d of f rainy, the H ollidaysburg Walk MS event wa s out st anding! O ver 80 0 pe ople were in at tendance to help make it one of the largest event s yet! T hank you to our sponsors: Tele trackin g (P resentin g Sponsor), Giant Ea gle, Pit tsburgh Burger Company, Be t s y Ann Chocolates, K D K A T V, K D K A Radio, EM D Serono, Wireless Zone Foundation, Biogen, Sam’s Club, Q ues tcor, Mylan, Chil dren’s Hospital of Pit t sb urgh of U PMC, Acorda, Sar ris Candies, Frog gy 9 8, W TAJ T V 10, People’s Natural G a s, and Local Ed ge. TOLL FREE NUMBER 1 800 344 4867 17
FUNDRAISING
Walk MS is a simple , but incredibly powerful way for you to share in the hope for the future .
VOLUNTEER SPOTLIGHT VOLUNTEER SPOTLOIGHT
A Letter from a B i ke MS C yclist C ycling eing a former r unner and “sprint tri-athlete” for her own Cure! Bcompetitor, MS stoppe d me in my track s . “I wante d to share with you what a wonder ful eve nt Esc ape to the L ake wa s this year. For years, I have st aye d home with our thre e children while my husband, Kur t , e mbarke d on the MS Ride. T his year, I had the for tune of joining him for par t of the ride. T he Esc ape to the L ake eve nt from st ar t to f inish wa s b eautifully str uc ture d and c arrie d out . T he volunte ers and st af f were kind, c aring, motivating and he lpful b eyond words . It wa s e xciting to be a par t of the Sunday ride . . . I manage d 50 miles until my MS c ame knocking on the door and e ncourage d / b egge d me to stop. I took the SAG for ab out 8 miles and then f inishe d the f inal 1. 5 miles with my husband. I am ver y stubb orn and determine d . . . so set tling for less than the complete ride on Sunday wa s dif f icult for me personally . . . but I knew that I ne e de d to stop and c an proudly say that completing the 50 miles wa s the most success that I have felt athletic ally in years .
Af ter my diagnosis, I we nt into a semi- depression and be c ame ver y go o d at fe eling sorr y for myself. A year af ter diagnosis, I de cide d to use the Esc ape to the L ake ride a s my return to par ticipation in sp or t s . I traine d (a lit tle) and fe lt bet ter be c ause I had est ablishe d a goal to reach for . . . and although I knew that I couldn’t complete the entire 150 miles, the opp or tunit y to e ngage in par t of the ride wa s motivating e nough to get me back on track to living my life in a s healthy a way a s p ossible. I espe cially appre ciate d the opp or tunit y to me et with other MS riders on Saturday eve ning and look for ward to continue d communic ations with each person . T hank you again for ever y thing! Take c are, Sandy Fowler - Diagnose d March, 2010
Become a Bike MS Champion! The overall program goal of Bike MS Champion, a mission-based, Society-wide program, is to “put a face on MS” that connects people living with MS with participants in major Society events. Both the event participant and the person living with MS are considered Champions. This connection fosters education, awareness, gratitude, and most importantly, hope. What are the benefits of participation for a person living with MS? • Empowers people living with MS to join the movement • Provides opportunity to express appreciation for event participant contributions • Creates therapeutic outlet to practice disclosure and share experiences As a person living with MS, your name will be put on a wearable item that will be sent, along with your contact information, to your cyclist. If you are a person living with MS or a cyclist and are interested in the Bike MS Champions Program, visit nationalMSsociety.org/PAX and click of the Bike MS button or contact Lauren at 412.261.6347. 18 JOIN THE MOVEMENT: nationalMSsociety.org
women on the move
Golf Outing Great Course. Great Cause. Great Reasons to Take the Day Off. Join the Movement and sign up today for one the Annual MS Golf Outings. The day is sure to be memorable and fun...all for a great cause! Erie Golf Outing: Friday, August 19, 2011 Riverside Golf Course Cambridge Springs, PA Anne E. Barnes Memorial Tournament Friday, September 1, 2011
Women Join Together to Fight the Devastating Effects of MS Thursday, September 22, 2011 10: 30 am to 1:30 pm Fox Chapel Golf Club Keynote Speaker: David Osmond David is the son of Alan Osmond, the founder of the famed troupe of singing brothers, who also lives with MS. David credits a favorite saying of his father’s — “I may have MS but MS does not have me” — with helping him get back on stage.
To purchase tickets or learn more about Golf for MS or other MS Outings visit nationalMSsociety.org/PAX
To purchase tickets or sponsor the event, call 412-261-6347
lobsterfest for ms
bike ms
You are cordially invited to attend an evening of fun and excitement including Dining, Dancing, Auctions and Door Prizes Friday, September 24, 2010 6 pm, $75 per person Bavarian Hall Your choice of a whole steamed Maine Lobster or a 10 oz. Filet Mignon. Both meals include a generous portion of steamed shrimp. Call 814-696-1017 for tickets.
Interested in taking on your own challenge, or volunteering? Check out our other two Bike MS events this year! Keystone Country Ride – July 23 & 24, 2-days, 150 miles Cook Forest River Ride – September 17, 1 day, 35 or 60 miles Each event has fully stocked rest stops every 10-15 miles, and Support and Gear Vehicles that can pick you up when you get too tired! Call 412-261-6347 or visit BikeMS.org TOLL FREE NUMBER 1 800 344 4867 19
FUNDRAISING
Golf for MS
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047
Western Pennsylvania Chapter 1501 Reedsdale Street Suite 105 Pittsburgh, PA 15233
1 800 344 4867 nationalMSsociety.org/PAX
JOIN THE MOVEMENT IN 2011 MARK YOUR CALENDAR! July 23 & 24 Keystone Country Ride
September 1 Anne E. Barnes
Memorial Tournament
July & August Family Nights
September 17
July 29 - 31 Kidz Camp
September 22 Women on the Move
Begins in August
U.G.L.Y. Bar Challenge
September 23 LobsterFest,
August 19 Erie Golf Outing
October 22 Wine Tour for a Cure
at the Ball Parks (pg. 12-14)
Cook Forest River Ride
Luncheon
Altoona