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Western Pennsylvania Chapter

Defining the Meaning of Love with MS

an immediate connection and they knew that it was fate that brought them together. Although Bob had no experience or interactions with MS, he quickly became Aimee’s rock and helped her through this life changing news.

Aimee is originally from Pittsburgh and Bob from Erie. They are currently building their lives together in the Edinboro area. They both knew that they found their ‘one’ and started talking about making the ‘happily ever after’ happen. Right around the time ‘wedding’ talk was surfacing, so were plans for the Walk MS event in Erie. Aimee was Her symptoms came on fast and furious, but she so excited to become part of the was determined to figure out what was movement, start a happening with her body. One test led to big friends & family another, as did the roads traveled. She was team, and begin to seeking and receiving treatment in Pittsburgh do her part to help when she received her diagnosis - multiple create a world free sclerosis. Aimee soon found out that the best of MS. way to deal with her MS is with the best medicine, jokes and laughter! Bob’s mind was elsewhere, like With the news, Aimee also sought comfort in getting the ring that he told Aimee was way her family, friends and new special someone too expensive (a bit of a fib to keep the surprise in her life, Bob Spitzer. Aimee met Bob online going)! The proposal plans got underway, as about 4 months prior to her diagnosis. It was Continued on Page 10 INSIDE THIS ISSUE:

Aimee Yeager’s story with MS began like so many others; she experienced loss of vision in her right eye, lost feeling in her hands and experienced numbness in her feet. Aimee initially thought the worst, was scared and truly didn’t know what was happening to her.

Living with MS Page 4

MS Teleconference Page 7-8-9

Flu Shot or Not? Page 14

Walk MS Page 23

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 Anne Mageras 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, Esq. Samuel Zacharias Members Emeritus: Aleta Whitaker 2


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 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.

Colle en’s involvement and leadership in the Western Penns ylvania Chapter spanne d more than 42 years . D uring that time, she launche d all of the societ y ’s key fundraising event s: the U.G . L .Y. Bar Challenge, Read -a -thon, Walk MS and Bike MS and engage d thousands in pro ducing communit y event s . She embrace d the concept of dire c t ser vices with the implement ation of a f inancial suppor t program for durable me dic al e quipment in 1982. H er pa ssion also centere d on providing for the ne e ds of c aregivers through the development of the Respite C are Program in 1992. Chapter Chair, David Stra ssburger note d: “Colle en wa s 18 years old when she joine d the Allegheny Distric t Chapter. O ver the ne x t years, she helpe d thousands of p e ople with MS . She went to their we dding s and their funerals, their children’s baptisms and bar mit z vahs . She oversaw a merger, a name change, an of f ice move, and countless other “ life c ycle” event s in the Chapter. Colle en’s contributions could be counte d in the millions of dollars she raise d for p e ople with MS, that mea sure would not do justice to a life commit te d to charit y. Congratulations on your retirement , Colle en. You made the world a b et ter place.” A s a pa ssionate leader in the MS movement for so many years, she will be misse d! Anne Magera s is name d Chapter President , in par tnership with the Chapter B oard of Tr uste es and the H ome of f ice Senior Management . Anne of f icially be c ame the Chapter President on Oc tober 1, 2011 af ter ser ving a s Interim Chapter President since March of this pa st year. Hire d in 1993 a s the Programs and Ser vices Dire c tor Anne brought with her the back ground and e xp erience of creating inter- disciplinar y teams in Anne Magaras pic tured with providing health and human ser vices . A s, Chapter D avid Osmond at the 2 011 WA MS L ucnheon Vice President , she provide d leadership for the Chapter ’s ac tivism; launche d the WA MS (now : Women on the Move) and initiate d the chapter ’s re lationship - building strategies with key communit y constituent s and donors . Anne ha s ser ve d a s a Chapter consult ant and on numerous clinic al work teams for S ociet y initiatives . 1 800 344 4867



Colle en M cG uire Re tires af ter 42 Years of S e r vice wit h the National MS S ocie t y

Preparing for pregnancy The good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm. Julie Hammond, diagnosed with MS in

doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says Dr. Green.

“Symptoms during pregnancy are probably not MS— tiredness doesn’t mean your 2002, with son Travis. Courtesy of Greater symptoms are coming back,” says Eileen Davis, APN, who has Nevertheless, making the New England Chapter. worked with people with MS decision to get pregnant for 12 years in New Jersey and New York. Keep can be complicated, primarily because of the physical challenges of MS, says Barbara Green, exercising, she recommends, “so you aren’t MD, director of the West County MS Center, St. carrying unnecessary weight post-pregnancy, which can affect symptoms such as falling.” Louis. “I also suggest women think about and discuss with their partners the emotional and Connect the team financial challenges of raising a child, which could affect work and managing the disease.” Connect your obstetrician and neurologist to coordinate your care. Visit www.naMeds, pregnancy and MS for None of the disease-modifying drugs (DMDs) “Pregnancy, Delivery and the Post-Partum Period” to share with health-care professionals. are approved for use during pregnancy, and If anesthesia is part of your birth plan, arrange a most should not be taken for a few months meeting with the anesthesia team. All forms of beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan anesthesia are considered safe for women with a discussion with your neurologist about when MS. to stop DMDs—and when, after delivery, to Don’t wait to plan for what happens after begin them again. delivery. Tap family and friends about helping with housework, food and, of course, watching “Until recently, most studies were neutral the baby! about whether breastfeeding was protective in preventing relapses,” says Dr. Green. “ But a Stair Lifts, Lif t Chairs and new study quotes a beneficial effect on relapse. Power & Custom Wheelchairs People with non-aggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.” Include any symptom-management medications in the discussion with your 4 JOIN THE MOVEMENT:

Your Mobilit y Par tner since 1996

80 0/50 0 -2429 ablemobilit

Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call us for free print copies. “MS and Starting a Family”—Momentum, Winter 2010-2011 (click “Back Issues”). Kara’s Story – Part I The National MS Society follows Kara from her first trimester…

Kara’s Story – Part II 1k&feature=channel …all the way through to the birth of her baby boy. The MS Daily Minute Sixty-second videos packed with information on • Beginning MS Therapy after Pregnancy • Relapses During Pregnancy • Breastfeeding with MS • Support During and After the Pregnancy

Yoga and aq uatics classes for persons with MS! G entle yoga and aq uatics classes may be available in your area , call the NMSS to register . 1- 80 0 - FIG H T- MS Photo Credit: Ed Kashi TOLL FREE NUMBER 1 800 344 4867



Resources on MS and pregnancy

PICTURING DISABILITY by dona felman Twenty years ago, in August 1991, when my children were six, four, and 11 months old, I was diagnosed with MS. My youngest child, Kaija, was taking her first steps while I was losing the ability to walk. I used a cane, but soon needed crutches, and shoes to illustrate her growing up, my mobility aids, by the time Kaija was two, I was using a wheelchair our legs together, her self-portrait in a wheelchair, most of the time. and other images depicting her memories and perceptions of disability. Last year, in a college photography class, Kaija was given the assignment to do a photographic essay. We talked about what it was like for her and her She chose “Disability” as the subject and framed brothers growing up. Looking at her little red images that showed her development as a little shoes, I said to Kaija that I had never held her hand girl with portrayals showing the progression of my and walked with her. disability. There is a photo of her little shoes with my Her reply: “I always had your lap.” cane, representing her learning to walk alongside Donna Fellman lives in rural Maine. my difficulty walking. Included is a sequence of Transp or t U, Inc . Accessible Transp or tation (doc tors appointments/ shopping/social appointments and more) A Wes tern PA Based spcialized transp or tation company with a focus on p ersonalized trips. 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

Join the Movement® 6


Call today to schedule a trip or inquire about our ser vices! 412. 281. 8350 A re you a n olde r adu lt? Contac t Silver Sneakers about their e xercise program and to locate a facilit y near you! w w w. Toll -free: 888 - 423 - 4 632

Join us from the comfor t of your phone for a year of informative conference c alls on a diverse range of topic s for pe ople living with MS . T his e duc ational series is fre e and made available through the collaboration of chapters of the National Multiple Sclerosis S ociet y.



Registration is fre e – reser ve your space to day! C all 1- 80 0 -34 4 - 4867, option 1 or visit w w w.nationalmssociet / pa x to register or for more information. Plea se note: Registration deadline is one we ek prior to each conference c all. Additional tele conferences may be adde d throughout the year. Plea se be sure to fre quently view the website to stay informe d about all program up dates . Thursday, November 10, 2011

Tuesday, January 24, 2012

Thursday, March 15, 2012

Thursday, May 3, 2012

Wednesday, July 18, 2012

Thursday, September 13, 2012

Parenting Skills Developing a Tool Kit for Your Family

Where is My Memory? Cognitive Changes in MS

Emerging Therapies for MS Treatment

Using Assistive Technology

Management and Rehabilitation of Advanced MS

Staying Healthy With Vitamins and Oral Supplements

6:30 - 7:30 p.m.

6:30 - 7:30 p.m.

6:30 - 7:30 p.m.

6:30 - 7:30 p.m.

Get help identifying your strengths and challenges managing MS and parenting responsibilities. Focus will be on the importance of communication, planning, prioritizing and a support network.

Learn about cognitive issues in MS and its impact on everyday life. Tools to help you manage and adapt to cognitive symptoms will also be explored.

Learn about advanced MS and the current status of research and practical applications for symptom management

Learn about the pros and cons of oral supplements and discuss some of the most commonly used vitamins, minerals and herbs.

Speakers: *Nancy Lowenstein, OT Mount Auburn Hospital Comprehensive MS Care Center and Assistant Clinical Professor, Boston University, MA *Ronnie Hochberg, MS, CRC, LMHC Mount Sinai Medical Center Department of Psychiatry, New York, NY

Speakers: *John DeLuca, PhD VP for Research, Kessler Foundation Research Center, Professor in Physical Medicine & Rehabilitation and Neurology and Neuroscience at the University of Medicine and Dentistry of New Jersey * Jeffrey Gingold Person living with MS and author of “Facing the Cognitive Challenges of M S” and “Mental Sharpening Stones.”

6:30 - 7:30 p.m. The emergence of new MS therapies is exciting and challenging for people living with MS and the clinicians who treat them. An MS neurologist will discuss the emerging MS therapies to promote a better understanding and educate you about treatment options. Speaker: * Stephen Krieger, MD Corinne Goldsmith Dickinson Center for MS at Mount Sinai Medical Center, New York, NY

6:30 - 7:30 p.m. Learn about a variety of assistive technologies that can enable people living with MS to function better at home and work. Resources that may be available in the community for funding equipment will also be addressed. Speaker: * Mark Surabian Assistive Technology Practitioner, Pace University, NY and owner/creator of web-based resource

Speaker: * George H. Kraft, M.D., M.S. Director of the Western MS Clinical Center and Alvord Professor of MS Research; Professor, Rehabilitation Medicine and Neurology at the University of Washington in Seattle

Speaker: * Patricia Melville, NP-C Stony Brook MS Comprehensive Care Center, Stony Brook University, NY

TOLL FREE NUMBER 1 800 344 4867


20 1 2 E mpl o y m e nt Te lec onfe r e n c e Series Th e W e s te rn P A C h a pt er o f t he N at i onal M S S oci et y w i ll be part i cipa tin g in the 2 0 1 2 E m pl o y m en t T el ec onf erence S eri es hos t ed t he N at i onal C a pita l, Ne w Y o r k C ity -S o ut hern New Y o rk , and Great er Delaw are Valley Th ur sd a y, J a n u a r y 1 2 , 7 – 8 p . m. A 21st C e n t u r y A p p r o a c h t o J o b S e arc hing: W e b inar: N et w ork y our wa y to find th a t n ex t jo b. Lea rn a bou t t he role onli ne j ob boards and socia l n e tworking w e b s it es c a n pl a y i n y o ur j ob s earch. T hi s program w i ll i nclu de a n on lin e co m p o ne nt f o r t h o s e w ho h a ve acces s t o t he I nt ernet , how ev er i t i s n ot req u ir e d . Th ur sd a y, J a n u a r y 2 6 , 7 – 8 p . m. G e t I n for m ed : L eg a l P r o t ec tio ns in the W o rkp lac e : Learn abou t ke y e mploym e nt l a w s , s uc h a s A D A a n d FM LA, and how you can u s e t hem t o ma ke a n info r m e d d e c i s i o n a b o u t e m p l o yment. Th ur sd a y, F eb r u a r y 9 , 7 – 8 p . m. M a n a g i n g Ch a l l en g i n g R es u me s : Do you need t o rest ru ct u re you r re sume due to g a p s , l a y o f f s , o r a c a reer c hange? Are you over 50 and hav e ex te n sive e xp e r ie nc e ? H R P ro f es s i o n a l s wi ll addres s t hes e and ot her res u m e ch a lle n ge s in this info r m a t i v e t el ec o n f erence. Th ur sd a y, F eb r u a r y 2 3 , 7 – 8 p . m. R e in ve n t Y o u r s el f : H ea r f ro m ot hers w i t h M S w ho changed career s a fte r th e ir d ia g no s is a n d a v o c a t i o n a l s p eci ali st on how t o nav i gat e t hi s t rans ition a l peri o d . Th ur sd a y, M a r c h 8 , 7 – 8 p . m. Hom e -Ba s ed E m p l o y m en t : W hat Emp lo y e rs W ant: Learn f rom actua l e mploye r s w h a t t h e y l o o k f o r w h e n hiring people to work from home. Th ur sd a y, M a r c h 2 2 , 7 – 8 p . m. D on ’ t D o It A l o n e: E m p l o y me nt Re s o urc e s : Learn abou t agenci es a n d reso u r c e s a v a i l a b l e t o h e l p y o u gain and maintain employment. R e g ist e r B y T el ep h o n e: R eg i st er f or any calls i n t he E m ployment Te le c on fe re nc e Se r ie s by c a l l i n g t h e Na ti onal M S S oci et y at 1- 800- 344- 4867 a t le a st on e w e e k p r i o r t o t h e c a l l ( s ) i n which you would like to participate. To P a r t i cip a t e: A ppro x i m a t e ly one w eek pri or t o t he call, you w i ll re c e ive ca l l - i n i n s t r u c t i o n s a n d a n i n formation packet via email. 8



RE GIS TE R TO DAY FOR THE 2 011-2 012 TE LE CON F E RENCES: m AI L FO R M TO: nAT IONAL ms sOCIE T Y, 1501 rEEDSDALE S T., S T E 105, pI T T SB U RG H, pa 15233 or FA X: 412-232-1461 Name _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ E- mail _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ Address _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ Cit y _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ St ate _ _ _ _ _ _ _ _ Zip _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ Phone _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

o I would like to re cieve Program / Tele conference Materials via E- Mail.

Plea se te ll us your conne c tion to MS: o I have MS o Sibling of a person with MS o Parent of a person with MS o I have a friend or co - worker with MS

o Spouse of a person with MS o Child of a person with MS o O ther _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Pl ea s e regi s te r m e for t h e following: Edc ua t i on a l T el ec o n f er en c e Serie s 2 0 1 1 -2 0 1 2 o P l e a s e reg i s t er m e f o r a l l d at es or o P a r e ntin g S k i l l s - D ev el o ping a T ool Ki t (N ovember 10, 2011) o W h e r e is M y M em o ry ? C o gni t i ve Changes i n M S (J anu ary 24, 201 2 ) o E m e r g in g T hera pi es ( M a rc h 15, 2012) o Us ing A s s i s t i v e T ec hn o l o g y f or People Li v i ng w i t h M S (M ay 3, 2 0 1 2 ) o Ma na g em en t a n d R eha bi l i t at i on of Adv anced M S (J u ly 18, 2012) o Sta ying H ea l t hy W i t h V i t a m i ns and O ral S u pplement s (S ept . 13, 2 0 1 2 ) 20 12 E m plo y m en t T el ec o n f er enc e S e rie s o A 2 1 s t C en t ury A ppro a c h t o J ob S earchi ng (J anu ary 12, 2012) o Ge t Inform ed: Leg a l P ro t e ct i ons i n t he Work place (J anu ary 26, 2 0 1 2 ) o Ma na g in g C ha l l en g i n g R es umes (Febru ary 9, 2012) o Re inv e n t Y o urs el f (F ebrua r y 23, 2012) o H o m e - B a s ed E m pl o y m en t : What E m ployers Want (M arch 8, 2012 ) o Do n’ t D o I t A l o n e: E m pl o ym ent Resou rces (M arch 22, 2012)

TOLL FREE NUMBER 1 800 344 4867


Lowe ’s H e roe s H e lp Eri e Fa mili e s Each year, Lowe's Heroes volunteer program helps to improve the communities where Lowe’s customers and employees work and live. Together, each store team identifies a community improvement project that will make a difference in their community.

This year in Erie, Lowes graciously partnered with the Western PA Chapter, to help 7 local families who struggle on a day to day basis with the unpredictability of multiple sclerosis. The help offered by Lowes varied from donating paint supplies, repairing a front porch railing, landscaping, to the widening of a doorway for accessibility purposes. Lowes had several employees and contractors donate the time needed to visit these homes and make the repairs and improvements as needed. It truly was a heartwarming experience for everyone involved. Beth Guarino, who had her front railing repaired said, “We really appreciate all the hard work on our front railing and fence. We can't thank Lowes enough for making our home a safer place.” Chuck Smith, who had a doorway widened for better accessibility said, “It’s all amazing. These people from Lowes are just wonderful”. The NMSS Erie Office is so very grateful for this working relationship with Lowes Heroes and being able to offer such an amazing opportunity to people with MS in the Erie area. While projects vary by location, Lowe’s Heroes volunteers share a common goal – to make the communities better places to live. Lowe’s works hard to be a good neighbor, and Heroes projects are a win for everyone – they just make Lowes employees feel good about contributions to the communities. To read more about Lowe’s Heroes projects, visit Love with MS FROM PAGE 1 wanted to make it as special and meaningful for Aimee. He also knew that he wanted to be in front of all the people that mean the most to Aimee, all of her loving friends and family. It all made sense, getting down on one knee at the Walk MS: Erie finish line! That’s the way it happened, only with one big twist. The 2011 Walk in Erie was consumed by a torrential downpour! It was wet and cold, but the hearts and souls that surrounded Bob and Aimee made all the dreariness disappear. Aimee and her team finished the Walk to Bob getting down on one knee and popping the question. She said yes! Aimee said, “It was amazing. Bad weather aside, everyone that was there was so happy. I even remember looking at a woman in a wheelchair smiling too.” And Bob said, “It was a great experience. With her recent diagnosis, I wanted to show her support and help soothe any pain.” They want to make Walk MS an annual event. Aimee’s goals are to grow her team, raise more money and maybe throw some playful competition in the mix! Beyond Walk MS, Aimee and Bob also plan on Joining the Movement at other MS Society events. Congratulations Aimee and Bob! 10 JOIN THE MOVEMENT:

On news of her death, her friends wrote:

Victoria Sue Cherin suffered with MS for nearly 20 years before her death on July 6, 2011. Vickie was a lovely lady and “She sought out the best in life, not to be able was taken from to brag, but rather to be able to savor. She you much too was equally quiet regarding her triumphs and early. She was tribulations, neither trumpeting the former nor a joy to know, bemoaning the latter. As each illness reduced she always had her activities, she extracted pleasure from those such a positive attitude. We should all take activities that were left, rather than dwell on those a lesson from her. I am so sorry but glad activities that were gone. When she realized that for Vickie that she no longer is suffering. I the activities remaining were too few and the pain haven’t seen Vicki in years and I know her endured for too long, again she accepted that health has been bad during those years. I fact and died as she had lived -- quietly and with will always remember her as full of life, dignity.” energy, laughter, and generous with her friendship. Vickie loved golf and all it involved. When she lost her sight in her right eye, she adjusted to playing She went in peace. She’s resting now. without depth perception. When she was finally diagnosed with MS, she still played golf wearing A few weeks following her death on July a weight on her right leg to control the tremors. 6, 2011, her daughter, Nicole Brown, When her strength was sapped by MS and the early conceived of a golf outing and Monte stages of her COPD, she would reluctantly take the Carlo night to honor Vickie and raise “blue flag” so she did not need to walk so far from funds for the fight against MS. From the cart. a standing start in late July, Nicole and Steve put together the golf outing and Vickie played her last round in May 2010 with her Monte Carlo night at Edgewood Country husband and friends. This round was played the Club for September 22, 2011, a mere two day before she went to see about the pain she was months. enduring. The pain turned out to be compression fractures in her back. Even with the fractures, she For the golf event, they had sixty golfers hit the ball well and was upset that she did not register and play, followed by hors score better. d’oeurve, drinks and a Monte Carlo night. The highlight of the golf event was a hole After more than a year of pain and suffering, the in one by Chapter President David A. breathing complications from the compression Strassburger, following a hole in one by fractures coupled with her MS proved to be too his playing partner, Matthew Burger. much. Just after midnight on July 6, 2011, with her daughter and husband by her side, Vickie slipped The 2012 Golf Outing will be on away. An interview with Tom Watson (another September 20th at Edgewood Kansas native and one of Vickie’s favorites) played Country Club for more information silently on the TV and Elvis sang gospel music on or to participant contact Nicole at the CD player. TOLL FREE NUMBER 1 800 344 4867 11



MS NOW: An MS Research Revolution OUR VISION: A world free of multiple sclerosis OUR RESEARCH FUNDRAISING GOAL: We will raise $250 million for MS research by the end of 2015 OUR RESEARCH GOAL: We are a driving force of MS research and treatment to: • STOP: We must stop all disease activity and prevent further progression for people already living with MS • RESTORE: We must restore all function that has already been lost to nervous system damage from MS • END: We must work to completely eradicate MS and prevent it from ever occurring in the future. HOW WE WILL ACHIEVE OUR GOAL: • Pursuing all promising avenues • Expanding the quantity and quality of MS research worldwide • Connecting people, resources and ideas • Speeding development of new treatments • Proven track record of results with significant impact on people’s lives NOW and No Opportunity Wasted utilized with permission from NOW, Inc., and in partnership with Phil Keoghan, tireless advocate and Champion for MS Research.

Scholarship Opportunity

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. 12 JOIN THE MOVEMENT:

High school seniors who have been diagnosed with MS or who have a parent with MS are eligible for the Society’s scholarship program. Awards range from $1,000-$3,000; a small number of four-year awards are offered. Applications for 2012 scholarships will be accepted (online only) between October 1, 2011, and January 13, 2012. For more info, visit or call us at 1-800-344-4867.


2011-2012 scholarship awarded The Centimark Foundation began to fund the NMSS Scholarship Program in 2008 and since that time has contributed $85, 000 to support the program. The Western PA Chapter of the NMSS awarded 3 scholarships for 2011-2012 school year to Casey Fisher, Shane Greenlee, and Nicole Marrow. John Rudzik, Executive Director, Ce n t i M a r k Foundation; Tim Dunlap, Presiden t & C O O , Centi Mark Co rpo rati o n; Anne Mag a r a s, M a j or Gifts Officer, Western PA Chapter o f M S Society; Ed Dunlap, Chairman & C E O , Centi Mark Co rpo rati o n

Casey Fisher of Tyrone, PA is attending Penn State – Altoona in the fall with a major in Education. Casey is a very optimistic person who was able to focus on how her mother’s illness impacted her for the better. At age 11 she had totake on many adult responsibilities and care giving duties. Casey dedicated time to caring not only for her mother but looking after her brother and working to help support her family. She developed maturity and leadership when faced with the struggles and responsibilities that fall to The Children of MS. Casey demonstrated many of her leadership skill throughout her high school years through her involvement in clubs, activities, and academics. Shane Greenlee of Albion, PA is attending Gannon University in the fall and majoring in Pre-Med. Shane was positively impacted by his mother’s diagnosis of MS, learning to become strong and how to deal with difficult situations that were thrown his way. He learned important lessons from his experiences with the disease that impacted his mother. On top of helping his mother through her MS he also had to help her with her battle with breast cancer. Shane dedicated time to be a care giver while pursuing the challenges of taking college classes while in high school, participating in school activities and clubs and maintaining strong academics. Nicole Marrow of Monroeville, PA is attending the University of Pittsburgh in the fall and is undecided on her major at this time and wants to pursue a law degree. Nicole was 9 when her mother was diagnosed with MS and understands the struggles a family endures when faced with MS. Nicole had to learn to make sacrifices to help look after her sisters, help around the home. Her mother has demonstrated how to overcome the obstacles of MS and through that Nicole has learned to be strong, fierce and determined which she has demonstrated through her involvement is clubs, activities and academics. TOLL FREE NUMBER 1 800 344 4867 13

Medicare deadlines Medicare recipients still have the opportunity to review, renew or replace drug plans during the annual open enrollment period, which began October 15 and runs until December 7 this year. The 2006 drug law imposes a penalty on those who need prescription drug coverage (and who do not have creditable coverage), but do not sign up in time. That penalty grows larger every year.

costs. People with low incomes also qualify. Apply directly through the Social Security Administration at i1020.

Flu shot, or not?

In 2012, the “donut hole,” or gap in prescription drug coverage, still exists, but the Affordable Care Act requires insurers to give Medicare Part D participants a 50% discount on most brand-name drugs, including the MS disease-modifiers, while they are in the coverage gap. Drugs prescribed “off label” for MS symptoms are still excluded from coverage and exempt from the discount. Visit for general information, publications and to compare the drug plans available in your area. Call an MS Navigator ® at 1-800-344-4867 for free health-insurance counseling. People with a Medicare private health plan, also known as a Medicare Advantage plan, (but not including a Medicare Medical Savings Account plan), can switch to Original Medicare during the Medicare Advantage Disenrollment Period from January 1, 2012, to February 14, 2012. The “Extra Help” program People who receive SSI (Supplemental Security Income) benefits, or who get help from the state Medicaid program to pay Part B premiums (Medicare Savings Plan), automatically qualify for “Extra Help,” which means no donut hole for prescription drugs as well as lower coinsurance and copayment 14 JOIN THE MOVEMENT:

Flu season brings not just coughs and sniffles, but the question: Get a flu shot, or not? Because there is a much higher risk of an MS relapse due to flu than to the flu vaccine, the Society generally recommends that people with MS get the shot. “Don’t wait for flu season to catch up with you. Discuss getting the flu shot with your doctor to protect yourself this year,” says Rosalind Kalb, PhD, vice president of the Society’s Professional Resource Center. The injectable flu vaccine—which is an “inactivated” vaccine—has been studied extensively in people with MS and is considered quite safe. It may be taken by people on an interferon medication, glatiramer acetate, or mitoxantrone. It is not yet clear if the vaccine is as effective for those

Tax deductions beyond medicine Many of the expenses associated with managing MS might be tax deductible, beyond medicines. (Keep in mind that only unreimbursed medical expenses that exceed 7.5% of your adjusted gross income are deductible.) Here are additional possibilities: • Equipment and extras, such as service dogs (and dog food!) and transportation to doctor appointments via car service or taxi if you can no longer drive. • Home modifications that don’t increase a home’s value. “Get a doctor’s prescription for ramps, wider doorways, grab bars, even a swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable,” suggests Anne Davis, program director of Legal Services for the Society’s New York City and Southern New York Chapter. For people receiving SSI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits. Two IRS Publications—907, Tax Highlights for Persons with Disabilities (

Dental Expenses ( p502.pdf)—may be helpful. Consult an accountant to make sure your particular situation is in line with current IRS regulations.

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N E W F REE APP! T he Real Talk team ha s deve lope d a Real Talk , Real Ans wers app t hat t akes the information we’ve gathere d from these programs and makes it available a s mobile app -available for download fre e on i Tunes today! T he dire c t link to the app is: ht tp: //itunes . /us /app/real t alk- real -ans wers /id4 40534785?mt=8

TOLL FREE NUMBER 1 800 344 4867 15


talking natalizumab or fingolimod. pub/irs-pdf/p907.pdf) and 502, Medical and It’s best to delay vaccination for four to six weeks after the onset of any serious exacerbations. People with MS should avoid FluMist, a live-virus flu vaccine (sometimes called LAIV for “live attenuated influenza vaccine”) delivered via nasal spray. For more information, go to vaccinations.

52 MS genes identified

treatments. The Society is funding a second large study to confirm and expand these results.

New MS therapy moves forward

In the largest MS genetics study ever, researchers have documented 29 new genetic variants associated with MS, and confirmed 23 others previously implicated in the disease. Most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. A large number were related to T-cell function; T-cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in MS. Also, two genes linked to vitamin D were found: research increasingly suggests that low vitamin D levels are a risk factor for developing MS. (The Society is funding a new clinical trial of vitamin D supplementation.) The study, a collaboration between the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2, was published in the August 11, 2011, issue of Nature, and involved nearly 10,000 people with MS and more than 17,000 who do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover what causes MS and improve 16 JOIN THE MOVEMENT:

The first phase III study of alemtuzumab (proposed brand name Lemtrada) for relapsing-remitting MS found that the drug met one of two primary endpoints. Researchers found that people treated with the drug had 55% fewer relapses over two years compared to those taking the interferon Rebif. However, results of the trial’s other goal, to delay disability, were not statistically better than Rebif. The study, called CARE-MS I, involved 581 people with relapsing-remitting MS. Another trial, called CARE-MS II, is still underway. Alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the FDA to treat B-cell chronic lymphocytic leukemia. Sanofi and Genzyme, the drug’s sponsor, plan to seek approval of this intravenous drug for MS in the U.S. in early 2012. In June 2010, the FDA designated alemtuzumab a “Fast Track Product,” which should expedite its future review after results of the phase III trials are submitted.

Bone health may begin early People with MS have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before MS has been diagnosed. According to the study, low bone mass is more widespread among people newly

Previously, scientists had speculated that people with MS are at greater risk of low bone density and broken bones due to factors such as lack of exercise stemming from mobility issues, medications or low levels of vitamin D (which plays a significant role in building bone). The researchers suggested that even early in MS, people should pay attention to good bone health by getting adequate vitamin D and calcium, as well as by performing weight-bearing activities. For more ideas on promoting bone health, go to and search for “You Can Build Healthier Bones.”


diagnosed with MS, or those with clinically isolated syndrome (or CIS, a single episode of MS-like symptoms), than among people without MS. Study researchers measured bone density in 99 people newly diagnosed with MS or CIS, compared to 159 people without MS. More than half of the people with MS or CIS had low bone mass, compared to 37% of controls.

At the fifth joint meeting of ECTRIMS and ACTRIMS (the European and Americas Committees for Treatment and Research in MS), over 5,000 of the world’s leading scientists and clinicians gathered October 19-22 in Amsterdam. Results from four phase III studies on MS therapies were presented, along with the latest research on MS risk factors, treatments and diagnosis. Join the conversation at blog.national, and connect with people with MS, the people who care about them and MS experts.

MS research TAKES center stage In October, blogger Dr. Julie Stachowiak and producer/director Kate Milliken—both of whom live with MS— reported live from the world’s largest MS conference at the Society’s blog. TOLL FREE NUMBER 1 800 344 4867 17

Eyetique & 3 Guys Optical Charity Partners with the Western Pa Chapter of the National MS Society Since 1979 Eyetique has been passionate about providing world class service, high fashion and high quality products to our customers throughout the Pittsburgh region. Eyetique and 3 Guys Optical are Creating a World Free of MS with their Charity Partners Program! Every time someone makes a purchase at Eyetique or our newest family member 3 Guys Optical, each with multiple locations, and mentions they want to support the National MS Society, Eyetique and 3 Guys Optical will donate 2% of the net sales price! To learn more about Eyetique or 3 Guys Optical or to see there locations visit: or

My Life, My MS, My De cisions is a series of online cla sses that will help you b oost your de cision - making power. It ’s your MS and it ’s your me dic al c are but sometimes it c an fe e l like other pe ople are making your de cisions for you. T hese cla sses ke ep you in the driver ’s seat . • B e an ac tive memb er of your healthc are team • Underst and your doc tor ’s me dic ation re commendations • Improve your health and we ll - being • Ar ticulate the rea soning b ehind your de cisions • Improve communic ation with your healthc are providers • Use sound rea soning to make de cisions ab out your health • De cide whether par ticipation in clinic al trials is right for you This co ur se is of fered a s an online program so yo u can access the cla ss when and where it is mos t convenient for yo u . Call 1- 8 0 0 34 4 - 4 8 67 or online at w w w.national MSso cie t


Give to a cause you believe in while making your tax bite smaller by donating to the Society before December 31. These suggestions can help your gift be a successful one. Talk to your accountant Charitable gifts made now may reduce what you owe for 2011. Talk to an accountant or financial advisor who can help you determine the full impact of your gift. Don’t wait Get started now to make the best of 2011 tax legislation. For example, the extended charitable IRA legislation allows people aged 70½ or older to transfer lifetime gifts of up to $100,000 tax free using funds from their IRAs. This opportunity is only available through December 31, 2011. Review your portfolio If you have held appreciated stocks for more than a year, avoid the capital gains tax by giving the stock to the Society—and get a deduction for the full value of the stock. Stock gifts need to be transferred into the Society’s account by close of business December 31 for them to count in the tax year. For details, visit Consider an annuity A charitable gift annuity provides you with current tax benefits and guaranteed payments for life, but it also allows you to provide for meaningful future gifts to

support people living with MS. Call the Society’s National Individual Giving Office at 1-800-923-7727 or email for more information. We make it very easy to weigh the options. Stick with organizations you support—like the Society! According to, dividing money among many nonprofits diminishes its impact as each charity will spend a percentage on fundraising and overhead expenses. An easy way to make a lasting impact is to name the Society as a full or partial beneficiary of your retirement plan or life insurance policy. Make a long-term commitment Be a partner in the Society’s efforts to end MS. Please consider a gift in your living will or living trust, which will help to support our mission well into the future. We can only succeed with your continuing support. For more information on ways to give to the Society, call us at 1-800-344-4867.

Unforgettable Rides. Unbeatable Destinations. Bike To Create A World Free Of MS. June 9 & 10, 2012 Western PA Escape July 28 & 29, 2012 Keystone Country Ride September 22, 2012 Cook Forest River Ride

For more information or to register visit bike MS .org TOLL FREE NUMBER 1 800 344 4867 19


Six tips for year-end giving

I Run To Stop MS Run to Stop MS is an initiative that gives athletes participating in a running event (marathon, half marathon, or other event) an opportunity to support people living with MS. Runners register for an event and the Run to Stop MS campaign. Receive fundraising and training tips, along with other participant benefits! Learn more about the Run to Stop MS Campgain or the 2012 Dick’s Sporting Goods Pittsburgh Marathon at the Western PA’s Chapter website:

WE S TE RN PA CHAP TE R’S FU N DR AIS NG E VE NT G E T A N E W T WIS T! The U.G.L.Y. Bar Challenge is a great way for restaurants and bars to support the National MS Society. The U.G.L.Y Bar Challenge is an annual campaign that challenges bars across 26 Counties in Western Pennsyslvania to compete against each other to raise the most money for the National MS Society. Each establishment hosts their own events and promotions—the more creative the better! We are encouraging all bars to participate and host an event the benefit the National MS Society throughout the year. This is the season to prove that your bar is the most understanding, generous, and loveable! The U.G.L.Y. Bar Challenge was established as a fun collaborative way for bars, restaurants, and pubs in the community to get involved in a cause. Learn more about the Challenge or to find a participating estabilshment or event visit: U.G.L.Y. Sponsors & Marketing Partners:


U.G.L.Y Bar Challenge Honors Harry Zourelias Over the past 10 years Harry, Lisa and Inn the Ruff in Penn Hills have raised of $100,000 and have taken home the top fundraising honors for Alleghany County for 4 years running. Harry, who passed away in March, was a truly unique and inspiring man, who devoted time year round to his family and especially his wife, Lisa. He was passionate about raising money for MS and he touched the lives of many. The National MS Society will honor the memory of Harry Zourelias by annually awarding the Harry Zourelias Spirit Award to the bar or restaurant owner who displays all of the characteristics that Harry had embodied throughout his life and also throughout the time he had spent fundraising for the UGLY Bar Challenge. Each year the award will be presented to the participant who carries on Harry’s tradition in his or her fundraising efforts. In the spirit of Harry, Inn the Ruff continues to support the National MS Society through their participation in the UGLY Bar Challenge. Visit Inn the Ruff of 6229 Saltsburg Road or other UGLY participants to join the movement and help make the world free of MS! Sean McDowell of 102.5 WDVE on Harry: “Harry Zourelias was one of those kind of guys you just don’t meet anymore…always has a smile or a balloon animal for you that he just made…in fact, he’d wear those balloon animals around his head all the time for our MS UGLY kick-off parties…he and his beautiful wife Lisa were a perfect fit and man, did they raise money for MS! Inn the Ruff, champions for how many years running now? Harry and Lisa were so committed to the cause of someday finding a cure for MS, and year round too, not just during the fall UGLY campaign!”

TOLL FREE NUMBER 1 800 344 4867 21

Loc al m an cycle s 8 state s in 8 days Mike Higgins of Mars PA didn’t own a bike and hadn’t ridden in 23 years, but when his high school friend called him about the opportunity to ride in the Great 8, he signed up. The task would not be easy- 500+ miles through 8 states in 8 days, complete with rain, wind, and an abundance of hills. “My wife thought I was going to die,” Mike recalled. But despite his physical shape in the beginning and being unable to start training in earnest until June due to a business trip, Mike never doubted that he physically would be able to complete the ride. In September, as part of his training, he participated in his first century ride- 100 miles through Findlay Ohio and 6 days later a 60 mile route on the Bike MS: Cook Forest River Ride in Clarion, PA. October brought the real test. The second annual MS Great 8 Bike Tour took 16 fundraising cyclists over 500 miles through 8 states in 8 days, from October 10th – 17th. Mike, the only cyclist representing Western Pennsylvania, and his team rode from Newton, MA to Washington, DC, raising awareness for multiple sclerosis along the way. The team’s goal was to raise $150,000 with each rider required to raise at least $5,000 each. Mike has already raised $7,500 with donations still rolling in. These funds will support research for a cure and programs to enhance the lives of those affected As he got more involved, his purpose for participating shifted. What began as a favor to a 22 JOIN THE MOVEMENT:

friend and a reason to shed some pounds transformed into a more meaningful journey. Touring the MS facilities with the other cyclists and meeting those living with the disease was a real eye opener for him. Every hour of every day, one new person is diagnosed with MS. Riders enjoyed the beautiful New England countryside with the changing autumn leaves, plenty of hills and little rain. After the second day of riding Mike felt the worst, but for him, it just got easier from there. “The hardest part was just being in the saddle for 8 straight days for 5 or 6 hours a day, but I felt myself gradually getting stronger each day.” On the sixth day the riders were facing wind gusts of over 30 miles per hour in Delaware, forcing riders to grip tightly to their bikes, but Mike thought the weather was beautiful and at this point he felt he was at his strongest. The ride brought together 16 distinct riders, all with big hearts, riding towards a world free of MS. Sharing the experience with these giving individuals, Mike stated “it was wonderful just to be associated with those other riders.” When asked what’s next, Mike responded, “I will be riding again next year.” The Great 8 riders are still taking donations to meet the team goal of $150,000. To become a donor, or for more information about the Great 8 ride, visit

R e g i s t r a t i o n is o p e n f o r t he 2 0 1 2 W a l k MS Campaign – t h e r e i s s u re to b e a n e v e n t near you ! W i t h 1 5 l o c a t i o n s t h r o u g hout We s t e r n P A t h i s s p r i n g , t h e W alk MS Cam p a i g n i s g e a r i n g u p t o r a i s e over $90 0 , 0 0 0 ! T h i n k n o w a b o u t f o rming a tea m a nd in v i t e y o ur f a m i l y me m b e r s o r o f f i c e - m a t e s t o j o i n yo u ! K at h y Ung e r t o o k o n t h i s c h a l l enge – a n d i s n o w i m p a c t i n g t h e e n tire W a l k MS Ca mpa i g n ! A l o n g - t i m e W a l k MS p a rt i c i pa n t , K a t hy w ork s for a P i t t s b u r g h - b a s e d c o m p a n y, Tele Tr a c king ( w w w . t el et ra c k i n g. co m ) , th a t pro v i des pa t i en t - f l ow sof t w a r e t o h e a l t h c a r e f a c i l i t i es to i n c r e a s e e f f i c i e n c y . E a c h y ear, Kat h y w o u l d r e c r u i t f e l l o w co -w o r ke r s t o bo t h w a l k w i t h her and d o n a t e t o t h e c a u s e s h e c a res so dee p l y a b o ut . I n 2 0 1 1 , K a t h y boldly app r o a c h e d h e r e m p l o y e r t o s ee if Tel e T r a c k i n g w o u l d b e i n t e r e s ted in taking a t g r e a t er ro l e i n t h e cam p a i g n – a n d t h e y a c c e p t e d ! For the s e c o n d y e a r , T e l e T r a c k i n g has signe d o n a s t he P res en t i n g Sp o ns o r fo r t h e c a m pa i g n . K a t hy and a g r o w i n g g r o u p o f o t h e r Tel e T r a c k i n g e m p l o y e e s a r e n o w “Te a m T e l e S t r i d e r s . ” Do e s y o u r o f f i c e h a v e a t e a m ? Not sur e h o w t o g e t i t s t a r t e d ? T a k e the

next step and call us to see how we can work with you to get your company m ore i nvolved! Register today for a Walk MS Event near y ou, wal km s.or g or c al l 800-FI G HT MS Save time, Register online at Name____________________________________ Address_ _________________________________ City _________________ ST _____ Zip _________ Phone____________________________________ E-mail____________________________________ Team Name_______________________________ Team Captain Name_ ______________________ I want to participate at: mBeaver 4/29 mBedford 4/22* mBradford 5/12 mDubois4/29* mErie 5/5 mGreensburg 4/22 mGrove City 5/5 mHollidaysburg 4/22* mIndiana 4/29* mJohnstown 4/22* mOil Region 4/28 mPittsburgh 4/22 mWarren 5/6 mWashington 4/29 Mail Registration to: Western PA Chapter, 1501 Reedsdale St., Ste 105, Pittsburgh, PA 15233 or Fax to 412.232.1461 *Keystone Branch, 506 Third Ave., Duncansville, PA 16635 or Fax to 814.696.1069 TOLL FREE NUMBER 1 800 344 4867 23


Take on th e Challe ng e – Form a Te a m Today!


Western Pennsylvania Chapter 1501 Reedsdale Street Suite 105 Pittsburgh, PA 15233

1 800 344 4867

JOIN THE MOVEMENT IN 2012 MARK YOUR CALENDAR! February Return to Romance

March MSquerade - Erie

Runs thru March

July 28 & 29

U.G.L.Y. Bar Challenge

Walk MS 2012 April & May

June 9 & 10

Western PA Escape Visit u s at w w w.national MSsocie t /PA X for more infor mation on all e vent s and other fundraisin g oppor tunities

Keystone Country Ride

September 22 Cook Forest River Ride

September 24

MS Colleen McGuie Classic

MS Connection Winter 2011  

MS Connection Winter 2011

MS Connection Winter 2011  

MS Connection Winter 2011