MS Connection Winter 2011

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Winter 2011• Issue 1 Western Pennsylvania Chapter

M O V I N G T O W A R D A W O R L D F R E E O F M S

Living with MSPage 4

MS Teleconference Page 7-8-9

Flu Shot or Not? 4

Walk MSPage 23

Defining the Meaning of Love with MSAimee Yeager’s story

with MS began like so many others; sheexperienced 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.

Her symptoms came on fast and furious, but she was determined to figure out what was happening with her body. One test led to another, as did the roads traveled. She was seeking and receiving treatment in Pittsburgh when she received her diagnosis - multiple sclerosis. Aimee soon found out that the best way to deal with her MS is with the best medicine, jokes and laughter!

With the news, Aimee also sought comfort in her family, friends and new special someone in her life, Bob Spitzer. Aimee met Bob online about 4 months prior to her diagnosis. It was

Continued on Page 10

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 so excited to become part of the movement, start a big friends & family team, and begin to do her part to help create a world free of MS.

Bob’s mind was elsewhere, like getting the ring that he told Aimee was way too expensive (a bit of a fib to keep the surprise going)! The proposal plans got underway, as

1-800-344-4867

Publication of the National Multiple Sclerosis Society Western Pennsylvania Chapter1501 Reedsdale St., Ste 105Pittsburgh, PA 15233

Chairman David Strassburger, Esq. Executive Vice-Chair Sandra L. BettorTreasurer Douglas Miner, Esq.Secretary Pamela A. McCallum, Esq.Chapter President Anne MagerasNewsletter Editor Lauren DiMariaNewsletter DesignerJennifer Staab

Board of TrusteesEllie BernsteinRobert S. Bernstein, Esq.John C. Brown, Jr.Scott ConleyRoberta Sciulli-CarlsonJoEllen Lyons Dillon, Esq.Arthur J. DiDonato, Jr.Franco HarrisRock Heyman, M.D.Rich HixonJerry Hogenmiller, Esq.Joan Campasano-HooverGeoffrey KellyRobert J. LewisDavid J. MaloneCarleen McGannDavid MinnotteJane Moriarty, Esq.Robert Nitzberg, M.D.Susan Fuhrer-Reiter, Esq.Ken RiceThomas Scott, M.D.Lou WeissThomas D. Wright, Esq.Samuel ZachariasMembers Emeritus: Aleta Whitaker

2 JOIN THE MOVEMENT: nationalMSsociety.org

WEStERN PENNSyLvANiA ChAPtER offiCESWestern 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.

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

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Colleen McGuire Retires after 42 Years of Ser vice with the National MS SocietyColle en’s involvement and leadership in the Western Pennsylvania Chapter spanne d more than 42 years . During that t ime, she launche d al l 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 producing communit y event s . She embrace d the concept of direc t ser vices with the implementation of a f inancial suppor t program for durable me dical e quipment in 1982. Her passion also centere d on providing for the ne e ds of caregivers through the development of the Respite C are Program in 1992.

Chapter Chair, David Strassburger note d: “Colle en was 18 years old when she joine d the Allegheny Distr ic t Chapter. O ver the ne x t years , she he lpe d thousands of pe 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 “ l ife c ycle” event s in the Chapter. Colle en’s contributions could be counte d in the mil l ions of dollars she raise d for pe ople with MS, that measure would not do justice to a l ife commit te d to charit y. Congratulations on your retirement , Colle en. You made the world a bet ter place.”

A s a passionate leader in the MS movement for so many years , she wil l be misse d!

Anne Mageras is name d Chapter President , in par tnership with the Chapter B oard of Truste es and the Home of f ice Senior Management . Anne of f icial ly became the Chapter President on Oc tober 1, 2011 af ter ser ving as Interim Chapter President since March of this past year.

Hire d in 1993 as the Programs and Ser vices Direc tor Anne brought with her the back ground and e xperience of creating inter- disciplinar y teams in providing health and human ser vices . A s , Chapter Vice President , she provide d leadership for the Chapter ’s ac tivism; launche d the WA MS (now : Women on the Move) and init iate d the chapter ’s re lationship - building strategies with key communit y constituent s and donors . Anne has ser ve d as a Chapter consultant and on numerous c linical work teams for Societ y init iatives .

A n n e M a g a r a s p ic tu re d w i th D a vid Osm o n d a t th e 2 011 WA M S L u c n h e o n


PRePaRING foR PReGNaNCYThe 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.

Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS, says Barbara Green, MD, director of the West County MS Center, St. Louis. “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.”

Meds, pregnancy and MS

None of the disease-modifying drugs (DMDs) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan a discussion with your neurologist about when to stop DMDs—and when, after delivery, to begin them again.

“Until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” says Dr. Green. “ But a new study quotes a beneficial effect on relapse. 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

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

symptoms are coming back,” says Eileen Davis, APN, who has worked with people with MS

for 12 years in New Jersey and New York. Keep exercising, she recommends, “so you aren’t carrying unnecessary weight post-pregnancy, which can affect symptoms such as falling.”

Connect the team

Connect your obstetrician and neurologist to coordinate your care. Visit www.na-tionalMSsociety.org/pregnancy for “Pregnancy, Delivery and the Post-Partum Period” to share with health-care professionals. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS.

Don’t wait to plan for what happens after delivery. Tap family and friends about helping with housework, food and, of course, watching the baby!

Julie Hammond, diagnosed with MS in 2002, with son Travis. Courtesy of Greater New England Chapter.

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Resources on MS and pregnancy Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call us for free print copies.

www.nationalMSsociety.org/pregnancy

“MS and Starting a Family”—Momentum, Winter 2010-2011 www.nationalMSsociety.org/Momentum (click “Back Issues”).

Kara’s Story – Part I www.youtube.com/watch?v=f1-heWH-C7jI The National MS Society follows Kara from her first trimester…

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Kara’s Story – Part II www.youtube.com/watch?v=npgN99NeD1k&feature=channel …all the way through to the birth of her baby boy.

The MS Daily Minute www.nationalMSsociety.org/dailyminute

Sixty-second videos packed with information on

• Beginning MS Therapy after Pregnancy

• Relapses During Pregnancy

• Breastfeeding with MS

• Support During and After the Pregnancy


Thursday,November 10, 2011

Parenting Skills - Developing a Tool Kit for Your Family

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.

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

Tuesday,January 24, 2012

Where is My Memory?Cognitive Changes in MS

6:30 - 7:30 p.m.

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.

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

Thursday,March 15, 2012

Emerging Therapies for MS Treatment

6:30 - 7:30 p.m.

The emergence of new MS therapies is exciting andchallenging 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, MDCorinne Goldsmith Dickinson Center for MS at Mount Sinai Medical Center, New York, NY

Thursday,May 3, 2012

Using Assistive Technology

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 SurabianAssistive Technology Practitioner, Pace University, NY and owner/creator of web-based resource Cognitechcafe.com

Wednesday,July 18, 2012

Management andRehabilitation of Advanced MS

6:30 - 7:30 p.m.

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

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

Thursday,September 13, 2012

Staying Healthy With Vitamins and Oral Supplements

6:30 - 7:30 p.m.

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

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

Twenty years ago, in August 1991, when mychildren 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 by the time Kaija was two, I was using a wheelchair most of the time.

Last year, in a college photography class, Kaija was given the assignment to do a photographic essay. She chose “Disability” as the subject and framed images that showed her development as a little girl with portrayals showing the progression of my disability. There is a photo of her little shoes with my cane, representing her learning to walk alongside my difficulty walking. Included is a sequence of

PICTURING DISaBILITYBY DONA FELMAN

shoes to illustrate her growing up, my mobility aids, our legs together, her self-portrait in a wheelchair, and other images depicting her memories and perceptions of disability.

We talked about what it was like for her and her brothers growing up. Looking at her little red shoes, I said to Kaija that I had never held her hand and walked with her.

Her reply: “I always had your lap.”

Donna Fellman lives in rural Maine.

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®

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Thursday,November 10, 2011

Parenting Skills - Developing a Tool Kit for Your Family

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.

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

Tuesday,January 24, 2012

Where is My Memory?Cognitive Changes in MS

6:30 - 7:30 p.m.

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.

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

Thursday,March 15, 2012

Emerging Therapies for MS Treatment

6:30 - 7:30 p.m.

The emergence of new MS therapies is exciting andchallenging 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, MDCorinne Goldsmith Dickinson Center for MS at Mount Sinai Medical Center, New York, NY

Thursday,May 3, 2012

Using Assistive Technology

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 SurabianAssistive Technology Practitioner, Pace University, NY and owner/creator of web-based resource Cognitechcafe.com

Wednesday,July 18, 2012

Management andRehabilitation of Advanced MS

6:30 - 7:30 p.m.

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

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

Thursday,September 13, 2012

Staying Healthy With Vitamins and Oral Supplements

6:30 - 7:30 p.m.

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

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

eDUC aTIoNaL TeLeCoNfeReNCe SERIES 2011-2012Join us from the comfor t of your phone for a year of informative conference cal ls on a diverse range of topic s for pe ople l iving with MS. This e ducational series is fre e and made available through the col laboration of chapters of the National Multiple Sclerosis Societ y.

Registration is fre e – reser ve your space today!

C all 1- 80 0 -34 4 - 4867, option 1 or visit w w w.nationalmssociet y.org /pa x to register or for more information. Please note: Registration deadline is one we ek prior to each conference cal l . Additional te le -conferences may be adde d throughout the year. Please be sure to fre -quently view the website to stay informe d about al l program updates .


2012 employment Teleconference Ser iesThe Western PA Chapter of the Nat ional MS Society wi l l be part ic ipat ing in the 2012 Employment Te leconference Ser ies hosted the Nat ional Capita l , New York City-Southern New York , and Greater Delaware Val ley

Thursday, January 12, 7 – 8 p.m.a 21st Century approach to Job Searching: Webinar: Network your way to f ind that next job. Learn about the ro le onl ine job boards and socia l network-ing websites can p lay in your job search. This program wi l l inc lude an onl ine component for those who have access to the Internet , however i t i s not re-quired.

Thursday, January 26, 7 – 8 p.m.Get Informed: Legal Protect ions in the Workplace: Learn about key employ-ment laws, such as ADA and FMLA, and how you can use them to make an in-formed decis ion about employment .

Thursday, february 9, 7 – 8 p.m.Managing Chal lenging Resumes: Do you need to restructure your resume due to gaps , layoffs , or a career change? Are you over 50 and have extens ive ex-per ience? HR Profess ionals wi l l address these and other resume chal lenges in th is informative te leconference.

Thursday, february 23, 7 – 8 p.m.Reinvent Yourself : Hear f rom others with MS who changed careers af ter their d iagnosis and a vocat ional specia l i s t on how to navigate th is t rans i t ional pe-r iod.

Thursday, March 8, 7 – 8 p.m.Home-Based employment: What employers Want: Learn f rom actual employ-ers what they look for when hir ing people to work f rom home.

Thursday, March 22, 7 – 8 p.m.Don’t Do It alone: employment Resources: Learn about agencies and re-sources avai lable to he lp you gain and mainta in employment .

Register By Telephone: Register for any ca l l s in the Employment Te leconfer-ence Ser ies by ca l l ing the Nat ional MS Society at 1-800-344-4867 at least one week pr ior to the ca l l (s) in which you would l ike to part ic ipate .

To Part ic ipate: Approximate ly one week pr ior to the ca l l , you wi l l receive ca l l - in instruct ions and an information packet v ia emai l .


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ReGIS te R toDAY FoR the 2 011-2 012 te LeConFeRe nCeS:M AIL FOR M TO: NAT IONAL MS SOCIE T Y, 1501 REEDSDALE S T. , S T E 105, PI T T SB U RGH, PA 15233 orFA X: 412-232-1461

Name _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

E- mail _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Address _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Cit y _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ State _ _ _ _ _ _ _ _ Zip _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Phone _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

o I would l ike to recieve Program / Teleconference Materials via E- Mail .

Please te l l us your connec tion to MS:o I have MS o Spouse of a person with MSo Sibling of a person with MS o Child of a person with MSo Parent of a person with MS o Other _ _ _ _ _ _ _ _ _ _ _ _ _ _ _o I have a fr iend or co -worker with MS

Plea se regis ter me for the fol lowing:

edcuational Teleconference Ser ies 2011-2012 o P lease register me for a l l dates o r o Parent ing Ski l l s - Developing a Tool Kit (November 10, 2011) o Where i s My Memory? Cognit ive Changes in MS ( January 24, 2012) o Emerging Therapies (March 15, 2012) o Using Ass ist ive Technology for People L iv ing with MS (May 3, 2012) o Management and Rehabi l i tat ion of Advanced MS ( Ju ly 18, 2012) o Staying Healthy With Vitamins and Oral Supplements (Sept . 13, 2012)

2012 employment Teleconference Ser ies o A 21st Century Approach to Job Searching ( January 12, 2012) o Get Informed: Legal Protect ions in the Workplace ( January 26, 2012) o Managing Chal lenging Resumes (February 9 , 2012) o Reinvent Yourse l f (February 23, 2012) o Home-Based Employment : What Employers Want(March 8, 2012) o Don’t Do I t Alone: Employment Resources (March 22, 2012)


LOVE WITH MS fRoM PaGe 1wanted 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 fin-ish 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 experi-ence. 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!

LoWe ’S HeRoeS HeLP eRIe fa MILIeS 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 proj-ect 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 wonder-ful”. 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 www.lowes.com/socialresponsibility.


NE

WSVictoria Sue Cherin suffered with MS for nearly 20

years before her death on July 6, 2011.

“She sought out the best in life, not to be able to brag, but rather to be able to savor. She was equally quiet regarding her triumphs and tribulations, neither trumpeting the former nor bemoaning the latter. As each illness reduced her activities, she extracted pleasure from those activities that were left, rather than dwell on those activities that were gone. When she realized that the activities remaining were too few and the pain endured for too long, again she accepted that fact and died as she had lived -- quietly and with dignity.”

Vickie loved golf and all it involved. When she lost her sight in her right eye, she adjusted to playing without depth perception. When she was finally diagnosed with MS, she still played golf wearing a weight on her right leg to control the tremors. When her strength was sapped by MS and the early stages of her COPD, she would reluctantly take the “blue flag” so she did not need to walk so far from the cart.

Vickie played her last round in May 2010 with her husband and friends. This round was played the day before she went to see about the pain she was enduring. The pain turned out to be compression fractures in her back. Even with the fractures, she hit the ball well and was upset that she did not score better.

After more than a year of pain and suffering, the breathing complications from the compression fractures coupled with her MS proved to be too much. Just after midnight on July 6, 2011, with her daughter and husband by her side, Vickie slipped away. An interview with Tom Watson (another Kansas native and one of Vickie’s favorites) played silently on the TV and Elvis sang gospel music on the CD player.

vICtoRIA SUe CheRIn MeMoRIAL FUnD

On news of her death, her friends wrote:

Vickie was a lovely lady and was taken from you much too early. She was a joy to know, she always had such a positive attitude. We should all take a lesson from her. I am so sorry but glad for Vickie that she no longer is suffering. I haven’t seen Vicki in years and I know her health has been bad during those years. I will always remember her as full of life, energy, laughter, and generous with her friendship.

She went in peace. She’s resting now.

A few weeks following her death on July 6, 2011, her daughter, Nicole Brown, conceived of a golf outing and Monte Carlo night to honor Vickie and raise funds for the fight against MS. From a standing start in late July, Nicole and Steve put together the golf outing and Monte Carlo night at Edgewood Country Club for September 22, 2011, a mere two months.

For the golf event, they had sixty golfers register and play, followed by hors d’oeurve, drinks and a Monte Carlo night. The highlight of the golf event was a hole in one by Chapter President David A. Strassburger, following a hole in one by his playing partner, Matthew Burger.

The 2012 Golf Outing will be on September 20th at Edgewood Country Club for more information or to participant contact Nicole at [email protected]


National MS Society’s United Way workplace giving designation code for Allegheny County only is:

898or call your local United Way office to check on the code number for your county.

Scholarship opportunity 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 www.nationalMSsociety.org/schol-arship or call us at 1-800-344-4867.

MS NOW: an MS Research RevolutionOUR 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 MSRESTORE: We must restore all function that has already been lost to nervous system damage • from MSEND: 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.


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2011-2012 SCHoLaRSHIP AWARDEDThe 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.

Casey Fisher of Tyrone, PA is attending Penn State – Altoona in the fall with a major in Education. Casey is a very optimistic personwho was able to focus on how her mother’s illness impacted her for the better. At age 11 she had totake on many adult responsibili-ties 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 ma-turity 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.

J o h n R u d z i k , E x e c u t i v e D i r e c t o r , C e n t i M a r k F o u n d a t i o n ; T i m D u n l a p , P r e s i d e n t & C O O , C e n t i M a r k C o r p o r a t i o n ; A n n e M a g a r a s , M a j o r G i f t s O f f i c e r , W e s t e r n P A C h a p t e r o f M S S o c i e t y ; E d D u n l a p , C h a i r m a n & C E O , C e n t i M a r k C o r p o r a t i o n


MEDICaRe DeaDLINESMedicare 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.

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 www.medicare.gov 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

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

fLU SHoT, oR NoT?

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


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talking natalizumab or fingolimod. 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 vac-cine”) delivered via nasal spray. For more infor-mation, go to www.nationalMSsociety.org/vaccinations.

Tax DeDUCTIoNS BeYoND MeDICINeMany 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 (www.irs.gov/

pub/irs-pdf/p907.pdf) and 502, Medical and

Dental Expenses (www.irs.gov/pub/irs-pdf/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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52 MS GeNeS IDENTIFIED

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

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

NeW MS THeRaPY MOVES FORWARD

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 bet-ter 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 eaRLYPeople 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

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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.

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 vita-min D and calcium, as well as by performing weight-bearing activities. For more ideas on promoting bone health, go to www.na-tionalMSsociety.org and search for “You Can Build Healthier Bones.”

MS ReSeaRCH TaKeS CeNTeR STaGeIn October, About.com 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.

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 MSsociety.org, and connect with people with MS, the people who care about them and MS experts.


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: www.eyetique.com or www.3guysoptical.com

My Life, My MS, My Decisions is a series of online c lasses that wil l he lp you boost your decision - making power.

It ’s your MS and it ’s your me dical care but sometimes it can fe e l l ike other pe ople are making your decisions for you. T hese c lasses ke ep you in the driver ’s seat .

B e an ac tive member of your healthcare • team Understand your doc tor ’s me dication • recommendations Improve your health and well - being • Ar ticulate the reasoning behind your • decisions Improve communication with your • healthcare providers Use sound reasoning to make decisions • about your health Decide whether par ticipation in c linical • tr ials is r ight for you

T his co ur se is of fe re d a s an onl ine pro g ram so y o u can acce ss the cla ss whe n and whe re i t i s mos t con ve nie nt for y o u . Cal l 1- 8 0 0 -34 4 - 4 8 67 or onl ine at w w w. national MSso -cie t y.org


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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 www.nationalMSsoci-ety.org/giftsofstock.

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 [email protected] for more information. We make it very easy to weigh the options.

Stick with organizations you sup-port—like the Society! According to www.charitynavigator.com, 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.

June 9 & 10, 2012 Western PA Escape

July 28 & 29, 2012 Keystone Country Ride

Unforgettable Rides. Unbeatable Destinations.

Bike To Create a World free of MS.

September 22, 2012 Cook Forest River Ride

For more information or to register visit bikeMS.org


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 understand-ing, 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: uglyMSevents.com

U.G.L.Y. Sponsors & Marketing Partners:

WeS TeRN Pa CHaP TeR’S FUNDR AISNG E VENT Ge T a Ne W T WIS T!

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: nationalMSsociety.org/PAX


U.G.L.Y Bar Challenge Honors Harry ZoureliasOver 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, champi-ons 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!”


LoC aL M aN C YCLeS 8 S TaTeS IN 8 DaYSMike 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

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 www.MSGreat8.org.

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Registrat ion i s open for the 2012 Walk MS Campaign – there i s sure to be an event near

you! With 15 locat ions throughout Western PA this spr ing, the Walk MS Campaign i s gear ing up to ra ise over $900,000! Think now about forming a team and invi te your fami ly members or of f ice-mates to jo in you!

Kathy Unger took on this cha l lenge – and i s now impact ing the ent i re Walk MS Campaign! A long-t ime Walk MS part ic ipant , Kathy works for a P i t tsburgh-based company, Te leTracking (www.te letracking.com), that provides pat ient- f low software to hea l thcare fac i l i t ies to increase ef f ic iency. Each year , Kathy would recruit fe l low co-workers to both walk with her and donate to the cause she cares so deeply about . In 2011, Kathy bold ly approached her employer to see i f Te leTracking would be interested in taking at greater ro le in the campaign – and they accepted! For the second year , Te leTracking has s igned on as the Present ing Sponsor for the campaign. Kathy and a growing group of other Te leTracking employees are now “Team TeleStr iders . ”

Does your of f ice have a team? Not sure how to get i t s tarted? Take the

Save time, Register online at walkMS.org

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

next s tep and ca l l us to see how we can work with you to get your company more involved!

R e g i s t e r t o d a y f o r a W a l k M S E v e n t n e a r y o u , w a l k m s . o r g o r c a l l 8 0 0 - F I G H T MS

TaKe oN THe CHaLLeNGe – foRM a Te a M ToDaY!

NoN-PRofitoRGANiZAtioN

U.S. PoStAGEPAiD

Pittsburgh, PAPermit # 3047

Western Pennsylvania Chapter

1501 Reedsdale StreetSuite 105Pittsburgh, PA 15233

1 800 344 4867nationalMSsociety.org/Pax

JoIN THe MoVeMeNT IN 2012MaRK YoUR CaLeNDaR!

July 28 & 29Keystone Country Ride

September 24 MS Colleen McGuie Classic

September 22 Cook forest River Ride

Runs thru March U.G.L.y. Bar Challenge

Walk MS 2012 April & May

June 9 & 10 Western PA Escape

March MSquerade - Erie

february Return to Romance

Visi t u s at w w w. national MSso cie t y.org / PA X for more infor mation on al l e ve nt s and othe r fundrais in g opp or tunit ie s

MS Connection Winter 2011

Documents

Transcript of MS Connection Winter 2011