MOVING TOWARD A WORLD FREE OF MS Western Pennsylvania Chapter
ACTION ALERT
resolved by June 30th 2012 , people with MS may no longer have access to in-network healthcare providers and services offered through the University of Pittsburgh Medical Center, its affiliates the West Penn Allegheny MS Treatment Center.
PLEASE CALL YOUR STATE REPRESENTATIVE & STATE SENATOR TODAY TO VOICE YOUR CONCERN REGARDING This could result in the following: ACCESS TO QUALITY • Increased and potentially MS CARE!! unaffordable out-of-pocket costs to patients The National MS • Delays or disruptions in care; Society is aware of major • Changes to long-standing changes taking place in relationships between patients the health care and in and their providers surance market place in Western Pennsylvania. • Increased claim and administrative These include burdens for patients, caregivers and negotiations involving contractual providers arrangements between certain stakeholders in • Longer waiting times for appointments the provision of care to people with MS that and shorter encounter time remain un-resolved at this time. The fact that (appointments) between patients and these negotiations remain unresolved is their health care team creating a growing sense of alarm among people • Increased confusion about coverage and with MS, their families and caregivers. payment issues straining systems and resources of payers and providers alike • The National MS Society’s primary concern • Threats to the quality and outcomes of is for the welfare of people with MS. care overall • If negotiations between affected providers and payers of MS care are not successfully INSIDE THIS ISSUE:
Continued on Page 8
Living with MS Page 4
Pediatric MS Page 6
Stress and MS Page 10
Scholarship Program Page 15
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
JOIN THE MOVEMENT: nationalMSsociety.org
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 Society’s Mission is: “We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. “ © 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.
The National MS Society offers as one of its services the Loan Closet program. The program accepts pieces of gently used Durable Medical Equipment (DME). Some examples are shower chairs, bedside commodes, manual wheelchairs, power wheelchairs, scooters, hospital beds, hospital bed tray tables, etc.
budget to purchase a manual wheelchair. They place the wheelchair in their car because they have no means to transport their powered chair. If their insurance paid for a powered chair then they’ll deny paying for a manual wheelchair.
We have 4 locations of donated equipment within our 26 county territory. There are 2 located If you questions about the loan closet program in Pittsburgh, 1 in St. Marys, PA, and 1 in Erie. contact Brian Sibenac or Mary Lee Jackson at The most frequent request on why a member 412-261-6347 or 1-800-FIGHT MS (344-4867). accesses the loan closet for a piece of equipment is because they need a piece of DME while their Stair Lifts, Lif t Chairs and current DME is being repaired. Not all insurance Power & Custom Wheelchairs companies offer the benefit to pay for a rental while their current DME is being repaired. Your Mobilit y Par tner since 1996
80 0/50 0 -2429 ablemobilit y.com
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.
Join the Movement
®
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 county. 1 800 344 4867
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LIVING WITH MS
Are You Interested in a Loaner Piece of Folks also access the closet Medical Equipment? because it is out of their
Walk this way: Using walking poles Potential tools in the walking arsenal that people with MS might want to consider are walking poles. These are adjustable-length ski pole–like shafts made of very light metal (such as titanium, carbon fiber or aluminum) with handles (called grips). Many have Courtesy of Jayah Faye Paley, adjustable wrist www.PolesForMobility.com straps and tips designed for walking on flat, steep or rugged terrain. Because they are used in pairs, poles—which lie between a cane and a walker on the continuum of assistive devices—offer increased balance, steadiness and support, according to Sue Kushner, PT, MS, associate professor of Physical Therapy, Slippery Rock University, Penn., who has spent much of her career working with people who have MS. “You can move a little faster, because bilateral support gives more stability and speed,” she said. Studies suggest that poles reduce the force on joints and help distribute the body’s weight better, meaning less work for the legs, knees, feet, hip and back. Less stress on the lower body translates into less fatigue, a frequent symptom of MS. “If you use poles instead of a cane, you may conserve energy,” Kushner said. 4
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Jayah Faye Paley grew up in Florida, and when she moved to northern California in her 30s, took up mountain hiking. She found she “didn’t have the natural footing of people who grew up with it.” She does not have MS. One day she met a fellow using poles, who was, she said, “poetry in motion on the trail.” She was so taken with both him (they married in 2003) and the poles that she made a career of teaching people to use them optimally. An ACE-certified personal trainer, Paley has created two training DVDs, including one for people with mobility challenges. “With minimal training—usually less than an hour—you can walk more fluidly and with a natural pattern because you recruit and strengthen the muscles that support and elongate the spine,” she said. Other benefits, Paley added, are confidence and focus. “You are walking for exercise, not just strolling—the poles are consistent reminders to move better.”
Pole primer “Talk to your physical therapist before you try them,” physical therapist Sue Kushner cautioned. Then choose poles based on your height, weight, hand size, issues (balance, for example) and your fitness or mobility goals. “Make sure they’re the proper height—about waist level, a little higher than a cane—and a comfortable weight. If you’re using them all day, you do care about their weight, especially if you have any weakness in your wrist muscles,” Kushner added. One drawback is that you can’t carry much with poles in both hands. However, a backpack is one possible solution. Good poles cost about $90 to $140 and should last a lifetime.
If walking is your favorite exercise, now is the time to plan ahead so winter doesn’t disrupt your regimen. Sue Kushner, PT, MS, recommends the following: • In snowy or icy weather, avoid walking outdoors—even to take Fido out. A sudden tug on a slick sidewalk can send you flying. “Even a little fall can really set you back,” Kushner said. “If you twist an ankle or tear a ligament, it can lay you up for a couple of months, plus you’ll have to do rehab. If you’re already weak, it might even put you into a wheelchair.” • Consider instead the great indoors! Mall-walking. Nearby gyms or YMCAs. Some offer monthly memberships that you can use during winter weather. Public schools or colleges. Call to find out if they are open to walkers in the evening.
LIVING WITH MS
Walkers: What’s your bad weather plan?
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• Consider using a walking device for extra assistance when it’s cold. • Always choose supportive footwear with a good tread. • Take advantage of clear days to get out; look for parks where walking paths have been cleared. • Depending on your balance and skill level, cross-country skiing or ice skating can be fun and challenging ways to take advantage of winter weather.
Photo Credit: Ed Kashi TOLL FREE NUMBER 1 800 344 4867
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Pediatric MS studies receive federal support The Society’s network of Pediatric MS Centers has been awarded a fiveyear grant from the National Institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with MS and matched controls without Children with MS attend Champ MS for a single visit to one of 10 Camp, held at Camp For All in Burton, Tex. Photo: Chase Shull centers around the Artisan Portrait Studios, courcountry—in tesy of the South Central Region. California, New York, Massachusetts, Alabama, Minnesota, Texas, Pennsylvania and Washington. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign. To learn more about the study including referral information, please email janace.hart@ucsf.edu or call 415-514-2476. For more information about pediatric MS, visit nationalMSsociety.org/pediatricMS.
CCSVI studies— one-year update The first-year progress reports from seven Society-funded studies of CCSVI, or chronic cerebrospinal venous insufficiency, were released July 14, 2011. The research teams report being on track in collecting objective and comprehensive data. The studies were launched with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society. The research teams have recruited a broad spectrum of people with and without MS. Already more than 486 people have been scanned using various imaging technologies. Only by refining imaging methods can investigators more reliably validate if a person actually has CCSVI and better understand its relationship to the MS disease process. The full results, to be released after completion, will help guide future steps, including the development of clinical trials to test whether treating CCSVI is safe and effective for people with MS. In the meantime, several of the teams will present preliminary results at medical meetings later this year. To read more about the studies and to get the news of results, visit nationalMSsociety.org/ccsvi.
Get the latest! Visit www.nationalMSsociety.org/signup to sign up for monthly MS eNEWS.
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After 28 years with the National MS Society, and seven as its president and CEO, Joyce Nelson is retiring as of October 1, 2011. “Although the time has come for me to formally pass the torch of leadership to another, my love for this work and for the people with whom I’ve served will never fade,” she said. “People living with MS have touched my life every day for the past 28 years, providing inspiration for the important work to be done. When the final answers are found and the race is won, I can assure you that I will be there with you to celebrate a world free of MS.” Nelson began her Society career in 1983 as a READaTHON coordinator in the Northern California Chapter and rose through chapter and national leadership positions to become the Society’s president and CEO in 2004. Among her many accomplishments, Nelson: • Founded Fast Forward, a research subsidiary of the National MS Society that supports clinical research and fast-tracks clinical trials of MS therapies and treatments; • Established six pediatric MS Centers of Excellence; • Created the MS Navigator™ program to provide personal assistance to people with MS; • Expanded the Society’s fellowship program to find and support young scientists doing essential MS research; • Increased the Society’s advocacy efforts through the establishment of the MS Caucus in Congress;
• Inaugurated financial assistance programs in all Society chapters; and • Expanded the nationwide scholarship program. “I know you will join me in wishing Joyce Nelson and her family all the best as they enter this new phase of their lives,” said Thomas Kuhn, chair of the National Board of Directors of the National MS Society.
Live Fully, Live Well – the holistic approach to MS A new multimedia wellness program, a collaboration between the Society and Can Do MS, launched this June. Called Live Fully, Live Well, it is designed for people with MS and their support partners, and deals with a wide range of topics covering health, relationships and quality of life. Through December 2011, Live Fully, Live Well is offering in-person workshops, videos, and monthly webinars presented by physical and occupational therapists, MS nurse educators, dietitians and other MS experts. The June and July webinars are already archived on the National MS Society website and can be accessed at any time. All the subsequent webinars will be available on the Society’s website shortly after the program’s air date. For details and schedules from August on, log on to www.nationalMSsociety.org and search for “live fully live well.” To register for in-person workshops, call Can Do MS at 1-800-367-3101, or email info@mscando.org.
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NEWS
Society President and CEO Joyce Nelson to retire
ACTION ALERT FROM PAGE 1 As a result, the National MS Society encourages resolution among the affected parties as soon as possible. The Society and its partner organizations, the Consumer Health Care Coalition and the Greater Pittsburgh NonProfit Partnership urge state officials to help resolve the disputes between stakeholders as quickly and reasonably as possible.
Western Pennsylvania Chapter Representative with Congressman Jason Altmire at the 2011 Advocacy Conference
PLEASE CALL YOU STATE REPRESENTATIVE & STATE SENATOR TODAY TO VOICE YOUR CONCERN REGARDING ACCESS TO QUALITY MS CARE!!
Visit the “Get Involved” tab on www.nationalMSsociety.org/PAX to learn more ways to you can be an MS Activist!
Docs Talk; research update
Taking control of your bladder
Dr. Rock Heyman is speaking about research on August 24th at the Holiday Inn, Beaver Falls, PA from 6:00 to 8:00 pm. Heavy Hors d’oeuvres and beverages will be served. Register today at nationalMSsociety.org/ PAX and click on the calender button or call 412.261.6347. Seats are limited.
Margie O’Leary, RN, MSN, MSCN will be presenting “Taking Control of your Bladder” at Somerset Hospital (Conference Room) on August 31st from 6:00 to 8:00 pm. Register online at nationalMSsociety.org/PAX and click on the calender button or call 412.261.6347.
Dubois ms symposium
Educational Teleconference Series
The Dubois MS Symposium will be held Saturday, October 15, 2011 at the Lakeview Lodge in Treasure Lake. This all-day program will include a host of presenters on various MS topics, including research. Look for your flyer in the mail soon!
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JOIN THE MOVEMENT: nationalMSsociety.org
Join us from the comfort of your own phone for a year of informative conference calls on diverse topics of interest to people living with MS. For more information visit nationalMSsociety.org/PAX or call Pam at 412.261.6347.
ADVOCACY
Up-to-date FAQs on the Affordable To help people with MS understand the Patient Protection and Affordable Care Act, or ACA, signed into law March 2010, the Society regularly updates Frequently Asked Questions on its website at nationalMSsociety.org/ACAFAQ. On this page, people can find answers to questions like: What if I am about to lose my COBRA coverage? Can children with pre-existing conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health Insurance Exchanges”? Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out? The FAQs also explore the regulations pertaining to the ACA provisions, as well as legal challenges the ACA faces. In addition, there are many links to fact sheets and useful websites that provide more in-depth information on specific issues.
regardless if the disability is in remission. Multiple sclerosis will almost always meet the “disability” criteria because MS limits a major life activity (namely, neurological function). The revised regulations also adopt the 2010 Standards for Accessible Design, setting minimum requirements for new construction or alterations of facilities of some 80,000 state and local governments and of more than seven million public places, including stores, restaurants, hotels, malls, libraries, museums, sports arenas, theaters, medical offices, polling places and emergency preparedness centers.
As various provisions of the ACA kick in over the next few years, the Society will continue providing Learn more at www.ada.gov. Also visit the up-to-date information and links. ADA National Network at www.adata.org or call 1-800-949-4232 for information and New ADA Rules training on how to implement the ADA in our area. More than 20 years after the enactment of the Americans with Disabilities Act (ADA), noteworthy changes went into effect March 2011. These demonstrate a continued commitment to realizing the full potential of the ADA and to properly enforcing civil rights of Sp ecializing in elec tric scooter, whe elchair, people living with disabilities. The definition of “disability” had been selectively narrowed over the years. Now, the Equal Employment Opportunity Commission’s new regulation is clear. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities,
and shor t-term medical equipment rentals to visitors and resident s. For your convenie ce, we deliver direc tly to and pickup f rom area at trac tions and hotels, 7 days a we ek . Enjoy greater indep endence and eas y accessibilt y. Ser ving Pit t sburgh and nearby areas. Visit pit tsburghwheelchaire xchange.com or call 412-241-5121. TOLL FREE NUMBER 1 800 344 4867
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stress and ms
MS. Although this sounds persuasive, Dr. Riise cautions that more research is needed to definitively exclude stress as an MS risk factor.
Vitamin D in AfricanAmericans with MS
Stress may play a role in exacerbating MS flares, but does it cause the disease in the first place? A new study suggests that stress does not appear to increase the risk of developing MS. The study, published in Neurology, May 31, 2011, focused on two large groups, totaling almost a quarter million women, from the Nurses’ Health Study, which has followed a large number of female nurses for decades. The nurses were asked to report on general stress at home and at work, and also any physical or sexual abuse as children or teenagers. The investigators, led by Trond Riise, PhD, University of Bergen, Norway, compared the answers between those nurses who had developed MS and those who had not. They also took into account age, ethnicity, smoking habits and other variables that have been linked to an increased chance of developing MS.
Research increasingly points to low levels of vitamin D in the blood as a risk for developing MS. A new study, [www.neurology.org/content/76/21/1824] funded in part by the National MS Society, does show that African-Americans with MS have lower levels of vitamin D than African-Americans who don’t have MS. Researchers Jeffrey Gelfand, MD, Ari J. Green, MD, and colleagues at University of California, San Francisco, found that of the group with MS, 77% were deficient in vitamin D, compared to 71% of those without MS. The study, based on examining 339 African-Americans with MS and 342 without the disease, found no link between vitamin D levels and how severe the disease was. African-Americans in general have an increased risk for low vitamin D levels, possibly because their skin has large amounts of melanin, which acts as a filter of ultraviolet light. This in turn limits how much vitamin D the body can produce. Study participants with a higher proportion of European genetic ancestry were less likely to have low vitamin D levels than participants with a lower proportion of European ancestry.
The risk of MS in African-Americans is about half that of Caucasians. However, the same researchers previously reported that The researchers found that those who later African-Americans tended to have a more developed MS had not responded significantly aggressive course of MS than Caucasians, a differently from those who had not developed higher risk for mobility impairments, were more 10 JOIN THE MOVEMENT: nationalMSsociety.org
The Society’s annual list of clinical trials in MS is now available online at www.nationalMSsociety.org/clinicaltrials.
likely to develop MS later in life and were at higher risk for symptoms in the optic nerve and spinal cord.
It features 130 studies that are in progress or recently completed. These cover neuro-protective agents; symptom medications; rehabilitation interventions such as cycling for improving MS-related depression, mobility and cognitive function; and more.
More than 52,000 volunteers have participated or are currently participating in these studies. Their participation—and yours— Viruses are well recognized as causes of nervous makes it possible to look forward to new therapies for MS. system damage and inflammation, so it is possible that a virus may set off MS. Various types of evidence point in particular to an association between MS and Epstein-Barr, a herpes virus that causes infectious mononucleosis and other disorders. Now, a new study hints at another possible link, this time Research continues to confirm it’s OK to mix between herpes zoster and MS. pregnancy and MS.
A link to herpes?
OK to mix pregnancy and MS
Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster—which usually shows up as the skin rash known as shingles—were more than three times as likely to develop MS over the next year than individuals who did not have an attack. The study, reported in The Journal of Infectious Diseases (6/7/2011), used a large data set of Taiwanese people. However, since people of Chinese genetic background are at lower risk for MS than Caucasians, the researchers do not know yet if this finding will translate to other populations.
A study published online in Annals of Neurology June 27, 2011, compared 432 births to women with MS and 2975 births to women without MS, confirming previous findings that, overall, the women with MS had normal pregnancies. The mean birth weight and gestational age of babies did not differ and women with MS were not at greater risk of adverse deliveries, including Caesarean sections. It was the first study where researchers were able to control for other factors that could affect outcomes, such as disability levels, obstetrical history and body mass index. TOLL FREE NUMBER 1 800 344 4867 11
RESEARCH
Clinical trials update
Golf for MS
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 To purchase tickets or learn more about Golf for MS or other MS Outings visit nationalMSsociety.org/PAX
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 sponsor the event, call 412-261-6347
The Western PA Chapter would like to send a special “Thank You” to everyone who made the 2011 Kids Camp such a huge sucess! 12 JOIN THE MOVEMENT: nationalMSsociety.org
Interested in taking on your own challenge, or volunteering? Check out our last Bike MS event this year, the fun fall Cook Forest River Ride! Cook Forest River Ride Present by New Dominion September 17 1 day, 35 mile for beginners or 60 miles for advanced Call 412-261-6347 or visit BikeMS.org
lobsterfest for ms You are cordially invited to attend an evening of fun and excitement including: Dining, Dancing, Auctions and Door Prizes Friday, September 24, 2011 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.
u.g.l.y. bar challenge Understanding Generous Loveable You can be a great way to support a great cause, attract new customers, and round up the old. The U.G.L.Y Bar Challenge is an annual campaign that challenges bars across the Western Pennsylvania region. Annually, the campaign registers about 700 establishments in over 20 counties in Western PA. These establishments are charged with organizing events and fundraisers for the National MS Society, all with the goal of raising the most money to win. For more information visit uglyMSevents.org or call Susan at 412.261.6347
wine tour for a cure
Wine Tour for a Cure Help create a world free of MS and join the Erie Branch Office of the National MS Society as they host a 5 stop winery tour in Northeast Pennsylvania and Southwest New York. Saturday, October 22, 2011 South Bus (from Cranberry Twp: Target) North Bus (from Erie MS Office) First Winery Visits start at 10 am Ticket cost is $75 per person North Bus Ticket cost is $85 per person South Bus Participants will receive a Commemorative Wine Tour Glass, enjoy lunch in the historic and cozy Kelly Hotel, tour wineries and tasting cellars, sample fruits, chocolates and other desserts. Register by calling 814.464.2901 or online at nationalMSsociety.org/PAX *Must be 21 to participate and have I.D. All participates must use the provided transportation.
TOLL FREE NUMBER 1 800 344 4867 13
SAVE WAYSTHE TO GIVE DATE
bike ms
VOLUNTEER SPOTLIGHT
M eet local b ike ms champion M arcy B l askow it z study February 2005 & am still in the study How I was diagnosed: In January of 2004 I was having some blind spot issue in my left eye. After going to a few doctors I ended up getting glasses to drive & the spot was gone. Through the very hot summer I was finding it harder than usual to deal with the heat. In August of 2004 I was having a lot of pain in my jaw & started to have numbness on the lips, which spread to half my tongue & cheek. My PCP said try 1 week of steroid before testing for anything else. The numbness did not change so I had an MRI w/contrast the week of my 30th birthday. I was driving when my PCP called with results & she said pull over first. Not what you want to hear from a doctor. She said the “good” news is there is not a tumor & she believes that it is MS. Okay so I was thinking how was that “good” news? when the only person I knew that had a brain tumor had it removed & was fine in a few months. I had to wait 6 weeks for an appointment with a neurologist, which created anxiety & fear & caused a bit of an exacerbation the weekend before the appointment. I learned that this was not the end of the world, but a start to a different kind of life. I was enrolled as a subject in an investigational
until 2012.
Why is Bike important to me: The idea of strangers riding & raising money to help us is heartlifting. Some have a connection to MS, but others do not they just love to ride & have taken it to another level with fundraising. The riders do what many person with MS cannot. This is a fun event where you can connect to people you would not normally ever meet. I love to work on the committee with others to help make this event outstanding! Read more about Marcy at www.nationalmssociety.org/PAX
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 and background, to your cyclist. The two of you are encouraged to communicate in whichever way you are comfortable with: letters, e-mail, phone, etc. 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. 14 JOIN THE MOVEMENT: nationalMSsociety.org
Making a contribution through an employer’s charitable giving program is a convenient, easy way to help us move toward a world free of MS. These programs offer employees the opportunity to make an annual pledge to charity, choosing organizations from a list— and choosing an automatic per paycheck deduction, or a one-time personal check. The federal government and companies nationwide will soon be kicking off their 2012 campaigns. It’s a good time to ask about how to give at your own workplace.
For public sector employees
Community Health Charities. If not, ask your human resources department why! (Visit www.healthcharities.org/Our-Charities for more information).
Get creative Your company doesn’t offer an employee giving program? More than a third of the nation’s employees work in corporations that do offer a giving program. Talk to your benefits administrator about getting in on this. Or call us to see if we can help.
Growing the Society’s scholarship program
The nation’s largest workplace giving 2011 was a record year campaign is the Combined Federal for the Society’s Campaign (CFC). It is open to federal, ever-expanding military and postal employees. Last year, scholarship program: more than a million people took part, givover $1 million in new ing more than $281.5 million to thousands awards and renewals were of charitable organizagranted to recipients such tions. The National MS CFC #11409 as Presidential Scholar Society is in this pool. If Rebecca Merlenbach, you participate, use the code CFC #11409 to diagnosed with MS at designate your donation to the Society. Jared Applebaum plans to age 15, and Mike Dugan study aerospace engineerScholar Breanna Burkes, ing. For private sector employees determined to become a neuroscientist to stop the disease that affected Last year, employees from such companies her mother. as UnitedHealth Group, American Express, Ameriprise and Toyota helped the Society A large part of the support that keeps the with their strong participation in workplace scholarship program helping students like giving campaigns. If your company Rebecca and Breanna comes from individual participates, the National MS Society should donors. To find out how you can help, call us or be listed in your visit www.nationalMSsociety.org/scholarship company’s and click “Support the Program.” campaign materials under the heading TOLL FREE NUMBER 1 800 344 4867 15
WAYS TO GIVE
Want to give at the office?
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! Begins in August
U.G.L.Y. Bar Challenge
September 23 LobsterFest,
August 19 Erie Golf Outing
October 22 Wine Tour for a Cure
September 1 Anne E. Barnes
Walk MS 2012 Pittsburgh 4/22 Oil Region 4/28 Meadville 4/29 Bradford 5/6 Warren 5/6
Memorial Tournament
September 17 Cook Forest River Ride
September 22 Women on the Move Luncheon
Altoona
More Dates and Location to Come