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SUMMER 2012 WESTERN PENNSYLVANIA CHAPTER

MS CONNECTION NEWSLETTER THANK YOU WALK MS PARTICIPANTS!

INSIDE 04 THIS ISSUE

LIVING WITH MS: GIVING CARE

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HOW I COMMUNICATE ABOUT MS WITH MY CHILDREN

THE ROAD OF A RESEARCHER

MY STORY: NANCY WEILAND


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MS CONNECTION: SUMMER 2012

LETTER FROM THE PRESIDENT

MS NOW ANNE MAGERAS PICTURED WITH REACH COORDINATOR SHERIE LAMMERS AT THE 2011 ADVOCACY CONFERENCE CONNECT WITH US ONLINE: Western Pennsylvania Chapter nationalMSsociety.org/PAX pax@nmss.org Like us: /MSWesternPA Follow us: @MSWesternPA Watch us: user/NationalMSSociety On the Cover: Beaver Walk MS Participants

Nearly 12,000 neurologists and investigators convened in New Orleans in April to present findings at the American Academy of Neurology’s annual meeting. Over 500 scientific presentations and display posters focused on research to stop MS, restore function, and end MS forever. The MS sessions were often standing-room only, and appear to get bigger every year. Among these were the latest results from pivotal clinical trials of emerging MS therapies, possible risk factors, underlying disease mechanisms, rehabilitation approaches, CCSVI, and much more. For free access to the conference abstracts (brief summaries), go to the American Academy of Neurology’s Website, http://www.abstracts2view.com/aan/ In most cases, studies presented are considered preliminary. Many of the results will be analyzed more thoroughly, and usually published in peer- reviewed science and medical journals. Confidence in a study’s findings grows when it is repeated by others, with similar results. • STOP: Among studies reported were these first results from late-phase clinical trials. If these treatments are found to be safe and beneficial, some of them may come on the market in 2012 and 2013. Other studies focused on understanding benefits, risks and modes of action of available and emerging therapies. • RESTORE: Rehabilitation to address cognitive changes was explored. In addition, several presentations focused on imaging techniques and pathology findings related to Chronic Cerebrospinal Vascular Insufficiency and MS. • END: Understanding risk factors that influence who gets MS, and also what course their MS will take, is crucial for finding ways to prevent MS and progression of symptoms. Among the presentations were studies that looked at interactions of genes, gender, and vitamin D levels. Please consider joining the MS NOW Research Revolution by clicking on the Research link on the National MS Society website. Sincerely,

Anne Mageras Anne Mageras Western Pennsylvania Chapter


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NATIONALMSSOCIETY.ORG | 1-800-344-4867

LIVING WITH MS

WHAT ARE ADL’S? BY BRIAN SIBENAC

AIDS FOR DAILY LIVING

FOR MORE INFORMATION ABOUT THE FINANCIAL ASSISTANCE PROGRAM PLEASE CALL BRIAN SIBENAC OR MARY LEE JACKSON AT 1 800 3444867.

Living with Multiple Sclerosis is difficult but can be managed well with the help of some equipment of Aids for Daily Living(ADL). Here are some examples of items for getting ready in the morning: bed cane or bed ladder, long handled bath sponge, sock aide, long handled shoe horn, & button hooks. While eating a few examples are: weighted eating utensils, scoop plates, cups with handles, one handed can openers, and over-the-bed tray tables. Also, these are some other examples of items to use during your day: reacher, magnifier, furniture risers, and car caddie. The National MS Society provides financial assistance for the above items and many others to help you live with MS in a more positive and independent way. We work with local durable medical equipment vendors and also with a national mail order catalog to place orders. n

NATIONAL MULTIPLE SCLEROSIS SOCIETY Western Pennsylvania Chapter 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1-800-344-4867 nationalMSsociety.org/PAX Chairman: David Strassburger, Esq. Chapter President: Anne Mageras Contributed Writing: Chapter Staff Design: Jennifer Skinner Š 2012 National Multiple Sclerosis Society, Western Pennsylvania Chapter

Information provided by the Society is based uponprofessional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.


4 LIVING WITH MS

GIVING CARE BY TERRI KUCZYNSKI, M.DIV., CT

All of us give care throughout our lives, whether it is through holding a hand or helping with daily needs from transportation to bathing. We give care when we listen to another’s sadness and when we fix a meal. We give care when we send a card or manage medication. Giving care to a loved one with MS can be very rewarding and at the same time unbelievably challenging. In some ways being a caregiver is like using a battery-powered drill. At first the drill is fully charged and the task at hand seems to be manageable. As the charge dies down, the task becomes more difficult until the drill just can’t continue. The only way to go on is to recharge the drill. If the caregiver does not recharge over time, even the smallest task becomes overwhelming.

RICK, DIAGNOSED IN 1991

MS CONNECTION: SUMMER 2012

SOME WAYS TO RECHARGE ARE TO: 01 Ask for help. Even simple things such as getting a gallon of milk for you or providing respite care so you can take a walk around the block can make a big difference.

02 Join a support group or an Internet

chat room set up for carepartners. (See ‘Carepartners Connect’ on following page for suggestions).

03 Take care of your body with proper nutrition, exercise and sleep.

04 Do something — call a friend, write a

letter, read — that gives you a daily break from the caregiving role.

05 Stay connected with community — don’t become isolated.

06 Laugh. Watch funny movies or TV programs.

IF A CAREGIVER DOES NOT RECHARGE OVER TIME, EVEN THE SMALLEST TASK BECOMES OVERWHELMING. Just recently I visited a friend who was caring for her husband. We talked about the many difficulties of caregiving. She talked about her feelings of helplessness and shared that at times she felt a lot of anger, which in turn made her feel guilty. She went on to tell me that her husband’s physical care could be overwhelming, but keeping track of all the day-to-day activities of life sometimes seemed crushing. She felt


NATIONALMSSOCIETY.ORG | 1-800-344-4867

weary and alone in this role that she was so unprepared for. After we talked, I walked out of the room and, when I turned to say goodbye, I saw her struggling to help her husband transfer from the sofa to a wheelchair. I then witnessed the true meaning of giving care. In the middle of the transfer, I saw them share a loving embrace. It was very brief, but very intentional. At that moment I could not tell who was caring for whom. I saw two people caring for each other. What a great way for both to recharge. n

5 Terri Kuczynski, M.Div., CT, is a patient/family counselor at the Rex Cancer Center in Raleigh, N.C. Originally published in CARE eMagazine, Eastern North Carolina Chapter

CAREPARTNERS CONNECT There is a wealth of ways for carepartners to connect online. Here are a few of them. Those caring for someone with MS can create their own website or visit another’s at www.CaringBridge.org. Here, carepartners can keep an online journal and photo gallery, ask for help with tasks, and post updates for friends and family who in turn can post messages of support. Today’s Caregiver at www.caregiver.com includes a map, clickable by state, of area support groups, and a special section where caregivers can post their tips for others. It also offers articles and information on everything from nutrition tips to long-distance care. The Well Spouse Association at www. wellspouse.org is a nonprofit membership organization that offers peer-to-peer support and educates healthcare professionals and the general public about the unique challenges that “well” spouses face every day.

The National Family Caregivers Association at www.thefamilycaregiver.org provides an online forum for caregivers to post questions or talk to others in similar situations. The Society’s online community at www. MSconnection.org offers a secure place for carepartners to connect. Members can create a personal profile to share posts, updates, blogs, photos, videos and links, and search for other members by demographics, shared interests and more. The Society also offers a page for carepartners at www.nationalMS society.org/carepartners with information and resources on accessible housing, hiring home help and more. Carepartners can also participate in the Society’s Online Peer Connections program, www.nationalMS society.org/onlinepeerconnections. Here they select a peer support volunteer from an online database and arrange to speak one-or-one via email or telephone on an agreed-upon topic. All conversations are confidential.


6 NEWLY DIAGNOSED

HOW I COMMUNICATE ABOUT MS WITH MY CHILDREN BY JULIE STACHOWIAK, PhD

I have twin girls who are now six years old. I was diagnosed with multiple sclerosis a couple of years before they were born, so it has always been present in our little family. I guess there was never a question about whether or not to share my MS status with them — it was too big to hide. One of my first memories of the girls really understanding that I wasn’t entirely well was when I had been reduced to tears by some incident.

MS CONNECTION: SUMMER 2012

One of my small daughters came to where I was sitting on the ground with my head in my hands and adjusted my collar, saying, “Here you go, Mommy. I’ll take care of you.” The experts will tell you (and I can confirm) that young children pick up when a parent is not feeling well. Child psychologists will tell you that this can manifest as increased clinginess, regression in terms of speech or potty-training progress, or reversion to younger behavior (such as needing a pacifier). Older children may get worried that something terrible is happening — that their parent will die, that they will die, that they did something bad and whatever is going on is all their fault. This may turn into sleeping issues or nightmares, withdrawing emotionally, or acting out at school. Those same experts say that we should answer all questions about our MS honestly and directly, adjusting information as they get older. That might, or might not, work for you. I know that some people choose to keep their MS from their children until they reach a certain age or something happens where it must be revealed. These parents may feel they are protecting their children from the pervasive worry of having a sick parent. I think that it is an individual choice. We all have to make our own way as parents. I can’t tell you what to do — I cannot tell you that you must be open about your MS with your children.

JULIE STACHOWIAK WITH HER TWO DAUGHTERS

The only thing I can tell you with 100 percent clarity is that it is impossible to show your children too much love.


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NATIONALMSSOCIETY.ORG | 1-800-344-4867 As far as my situation goes, I have chosen to be very open with my daughters (in an ageappropriate way). I tell them when I am tired and I tell them when I feel better and I make sure that we do something fun and active during those times. We discuss MS and I have tried to explain to them what is happening in my brain. They know that I don’t like it when music is too loud or when we’ve been outside in the sun for too long.

AS FAR AS MY SITUATION GOES, I HAVE CHOSEN TO BE VERY OPEN WITH MY DAUGHTERS ... I TELL THEM WHEN I FEEL BETTER AND I MAKE SURE THAT WE DO SOMETHING FUN AND ACTIVE DURING THOSE TIMES. I won’t say that I have handled it perfectly. I have seen one of my daughters looking at me with a furrowed brow too many times, while the other one may come into my bedroom with “nightmares,” when I suspect she really just wants to check on me. However, I do think that they are considerate, gentle and compassionate. They seem slightly less self-centered than some of their classmates. They are not afraid of people who are different — we have friends with Down syndrome, who use wheelchairs and who are hooked up to oxygen. My girls don’t seem to see any of it, just the person whom they want to tell about their Halloween costume or their newest toy. I’m proud of that. n

SOCIETY RESOURCES FOR FAMILIES The Society’s “Family Matters” Web page at www.nationalMSsociety.org/Family Matters contains links to helpful brochures, programs and resources. Each issue of Keep S’myelin has fun, engaging activities to help parents and children learn about and discuss MS together. Go to www.nationalMSsociety. org/keepsmyelin for back issues and subscription information. Search for and download Society brochures Plaintalk — A Booklet about MS for Families for information on talking about MS with family members and Someone You Know Has MS for children at www.nationalMSsociety.org. Join the online “Family Matters” community at www.MSconnection.org. Watch the Society video “Parenting with MS” at www.youtube.com/watch?v= V93TG_0LJiA.

Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally published at www.blog.nationalMS society.org.


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MS CONNECTION: SUMMER 2012

CALENDER

RESEARCH

LOCAL PROGRAM EDUCATIONAL TELECONFERENCE SERIES 2011-2012 Registration is free - reserve your space today!

THE ROAD OF A RESEARCHER BY MARCELLA DURAND

• Staying Healthy With Vitamins and Oral Supplements, Thursday, September 13, 2012

Richard Ransohoff, MD, began his long research career with a Harry Weaver Neuroscience Award from the National MS Society.

Call 1 800 344-4867, option 1 or visit nationalMSsociety.org/PAX to register or for more information. n

“There wouldn’t have been a career, otherwise,” he says. “I had no research track record — the Society really took a chance on me.”

Helping People Live Life Better!

It was a chance that paid off big time. Dr. Ransohoff’s research into the role of “chemokines,” messenger proteins that play a role in the immune system, may lead to new MS therapies. For his groundbreaking research, he was chosen by his peers as the 2012 John Dystel Prize recipient. The prize is given jointly by the Society and the American Academy of Neurology.

• Management and Rehablitation of Advanced MS, Wednesday, July 18, 2012

Service...Knowledge...Commitment

THE ROLE OF CHEMOKINES

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In 1993, not too long after he received the Weaver Award, Dr. Ransohoff made the discovery that chemokines played an important role in MS.

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He and a colleague, Mari Tani, MD, at the Cleveland Clinic had been studying mice with EAE, an MS-like disease, when they found that astrocytes, a type of brain cell, were producing chemokines that attracted immune cells to the mice’s brains. “It was like the disease process sat


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NATIONALMSSOCIETY.ORG | 1-800-344-4867 up and talked to us,” he remembers. His team then went on to study chemokines in immune cells from people with MS, where they found chemokine receptors on many of the cells involved in the immune attack.

PAVING THE WAY Dr. Ransohoff also showed that chemokines may actually help determine whether nervous system repair occurs during the course of MS. By deactivating a chemokine receptor called “CXCR2,” he found that the development of myelin-making cells was improved. “The insights that Dr. Ransohoff’s discoveries have provided could ultimately pave the way for the development of a new class of drugs in MS based on chemokines,” said Benjamin M. Segal, MD, one of the nominators of Dr. Ransohoff for the Dystel Prize. With a research grant from the Society, Dr. Ransohoff is now studying cell types with and without chemokine receptors to clarify how these cells participate in tissue damage and — with an eye toward developing a future therapy to stop disease activity — tissue repair. He also is returning the Society’s long-ago gesture of trust by mentoring young researchers and teaching them how to talk about their discoveries. “The theoretical and conceptual side of science is invisible unless you communicate it,” he says. n Marcella Durand is the associate editor of Momentum, the Society’s national magazine

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See what existing customers have to say: “I just wanted you to know that I LOVE my vest. I just learned to ride a motorcycle but since I have Multiple Sclerosis I am very limited due to the heat. Now with my vest, I can ride all day and never have to worry about getting hot. Thanks for having such a great product.” – Andrea Somers

For more information visit us on-line at stacoolvest.com or call toll free 1-866-782-2665


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MS CONNECTION: SUMMER 2012

SCHOLARSHIP

2012 AWARD RECIPENTS BY PAM DIXON

The Western PA Chapter of the National MS Society is pleased to announce that scholarships have been awarded to seven recipients who demonstrated a commitment to academics, community service and involvement with Western PA Chapter of the National MS Society. Each recipient received a $2,000.00 scholarship for the upcoming 2012-2013 academic year. The National MS Society’s scholarship program exists — to help outstanding individuals who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The National MS Society Scholarship Program is for first-time college freshmen (of any age) only. The program opens October 1 and closes mid-January 2013. For more information visit the website at www.nationalmssociety.org/scholarship n

KAITLYN BLAIR

ASHLEY KRUISE

Indiana, Pa Edinboro University Major: Undecided

Erie, PA Saint Francis University Major: Physical Therapy


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NATIONALMSSOCIETY.ORG | 1-800-344-4867

KYLE SURKOVICH

MARY WEAVER

Hollidaysburg, PA Pennsylvania College of Technology Major: Graphic Design, Photography, Webpage Development

Franklin, PA Penn State ErieThe Behrend College Major: Speech Pathology

TODD SURKOVICH

THOMAS WEAVER

Hollidaysburg, PA Lock Haven University of Pennsylvania Major: Athletic Training/ Pre Physical Therapy

Franklin, PA Penn State Erie – The Behrend College Major: History

STEPHANIE MOORE Hookstown, PA California University of PA Major: Communication Disorders and Sciences

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. To register call 1 800 344-4867, or visit nationalMSsociety.org/knowledge.


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MS CONNECTION: SUMMER 2012

MS ERIE CLINIC

RECEIVES NATIONAL AFFILIATION BY PAM DIXON & MARY LEE JACKSON

Northshore Neurosciences was recently recognized by the National MS Society as a Center for MS Comprehensive Care. The newly affiliated center is directed by Erica Grazioli, D.O., and is located in Erie, PA at UPMC Hamot. The Centers for Comprehensive Care: • Focuses on the experience of the patient • Recognizes the benefit for patients to have access to a full array of medical, psycho-social and rehabilitation services to address the varied and often complex issues related to living with MS • Acknowledges clinical sites that demonstrate the ability to provide coordinated and comprehensive MS care to patients, while allowing flexibility in center operations and staffing models • Involves a strong collaboration between the Society and center • Recommended by a National Comprehensive Care Review Committee. n

NORTHSHORE NERUOSCIENCES/UPMC HAMOT MULTIPLE SCLEROSIS CENTER RECEIVES NATIONAL AFFILIATION Denise Schlabach, RN, Rebecca Parkhurst, P.A.-C., Director Erica Grazioli, D.O., Allison Boyd, P.A.-C., Mary Lee Jackson, NMSS staff member

MY STORY

NANCY WEILAND BY TAYLOR MORSILLO (currently serving in the Peace Corps)

Diagnosed 11 years ago, Nancy, 57, of Pittsburgh, PA used this life change not as a pathway for anger and resentment, but as a vehicle for change and a new outlook on life. “I have never been mad about having MS, true the medications and various treatments have been difficult and frustrating, but I have found that music is my ultimate medicine.” She was working full time at Saks 5th Avenue in Pittsburgh when she was diagnosed. Having always been a working woman with a full schedule, Nancy turned to the National MS Society after diagnosis as an avenue for


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NATIONALMSSOCIETY.ORG | 1-800-344-4867

support, information, and a way to be involved with the MS community. “Volunteering revitalizes you, it gives you something to strive for, something to focus on.” An activist in the MS community for the past ten years, Nancy spends much of her time participating in volunteer activities. Three or more days a week she can be found filing papers, calling and answering phones, stuffing envelopes among many other activities. “Volunteering is a daily learning process, you never know what to expect, because each day is different from the last.” Knowing that she can do something, no matter how big or small the task helps to build her confidence. “I am surrounded by the most positive people there.”

“VOLUNTEERING REVITALIZES YOU, IT GIVES YOU SOMETHING TO STRIVE FOR, SOMETHING TO FOCUS ON.” The saying “I may have MS, but MS doesn’t have me” makes Nancy laugh, “that’s crap, its there, its something that doesn’t go away, sometimes its controllable, sometimes its not. Living with MS is a moment-by-moment lifestyle. Yesterday I was spring cleaning, today I could barely walk.” Nancy finds comfort in various forms of physical and mental exercise like yoga and word search puzzles and solace in any form of music.

According to Nancy, there are some things that someone living with MS cannot overlook; a good MS doctor, other doctors that work with people who have MS, an understanding caretaker, and support from family and friends. These things are priceless to her. Her husband Jim has been a huge part of her life, “I am literally unable to imagine doing anything without him. He is my support system, totally understanding and caring.” Nancy continues to stay busy volunteering at the Western PA Chapter, and doing makeup for private clients. The 9-5 lifestyle she had for almost 20 years is in the past, not forgotten, but not missed either. “Life with MS is all about making decisions for YOU, its important to be open to the life changes that will be made as the years go by.” Although MS has altered her physical life it has not broken her inspiring spirit and caring nature. “Love and compassion is not a choice, it’s a way of living.” is how her nephew Dave Weiland describes her. n

WEDNESDAY, SEPTEMBER 12, 2012 (412) 26-6347 Fox Chapel Golf Club Guest Speaker: Zoe Koplowitz Register Online: nationalMSsociety.org/PAX


14 RAY, DIAGNOSED IN 2003

MS CONNECTION: SUMMER 2012

few real-world examples of accommodations that have worked for people with MS at www.askjan.org/soar/MS/MSex.html.) I then pointed out two things to remember about accommodations:

01 You must be able to perform the essential

functions of your job. The ADA (Americans with Disabilities Act) does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.

MONEY MATTERS

WHAT ARE JOB ACCOMMODATIONS AND HOW DO I GET ONE? BY KRIS GRAHAM

At the Society’s Information Resource Center, where people with multiple sclerosis and their families can call an MS Navigator® at 1-800-344-4867 for help on a range of topics, we recently received a question about how to obtain accommodations when multiple sclerosis starts to get in the way of doing your job. So here’s what I told our caller. First, I explained what accommodations are. They can be things like new equipment or changes to existing equipment. Another type of accommodation may be a change to your work routine, such as hours worked. (Read a

02 Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available — so be ready to discuss alternatives.

Next, we discussed whether or not the ADA applied to the caller’s situation. People can request reasonable accommodations under the ADA if: n

They work for an ADA-covered employer;

n

They are “qualified” to do the job; AND

n

They are a person with a disability as defined by the ADA.

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions. If you’re not sure whether your employer is covered by the ADA, contact your regional ADA Center (look up your region at www.adata.org) or visit JAN (the Job Accommodation Network) at www.askjan.org. Both organizations are free and confidential resources. If your employer


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NATIONALMSSOCIETY.ORG | 1-800-344-4867

is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.

n

What accommodations or changes to your work will be effective?

n

When should you speak with your employer (or potential employer)?

“Qualified” to do the job means that someone has the “skills, experience, education, or other requirements” of the position, and “can perform the essential functions of the position with or without reasonable accommodation.” (For more information, download the Disability Law Handbook — Employment and the ADA for free at www.swdbtac.org/html/publications/ dlh/employment.html.)

n

Who should you involve in the conversation?

n

How should you follow up on your request?

n

What are your rights if things go wrong?

The ADA’s definition of a “person with a disability” now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations. Although people with MS do not necessarily have to disclose their diagnosis, they must provide enough information for the employer to understand that they are a person with a disability. For more about workplace disclosure and a helpful worksheet, visit www.nationalMSsociety.org/disclosure. My next advice to the caller was to be prepared! Before you request accommodations, make sure you can answer all of the following questions: n

How is MS affecting your job, potential job, or application process?

n

Why are you requesting accommodations?

n

What information will you need to provide to your employer (or potential employer) to clarify the impairment affecting your work and the accommodation that will remedy the situation?

Finally, I told the caller that if she had additional questions, an MS Navigator would be standing ready for her call. n Kris Graham is the employment manager for the National MS Society.

THESE RESOURCES CAN PROVIDE MORE HELP AND INFORMATION The Win-Win Approach to Reasonable Accommodations, available at www.national MSsociety.org/accommodations. ADA — Your Employment Rights as an Individual With a Disability, available at the U.S. Equal Employment Opportunity Commission’s website at www.eeoc.gov/ facts/ada18.html. Employees’ Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act, available at www.askjan.org/EeGuide. JAN’s Searchable Online Accommodation Resource (SOAR) at www.askjan.org/soar/ index.htm.


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MS CONNECTION: SUMMER 2012

SAM’S CLUB

STATE COLLEGE SAM’S CLUB EMPLOYEES

TAKES A BOLD STEP IN THE FIGHT AGAINST MS! BY KIM FECICH

After six weeks of fundraising earlier this year, in over 600 clubs across the country, Sam’s Club presented a check to the National MS Society for $1.5 million, nearly $400,000 more than last year! Through grassroots fundraising that included cookouts, hot chocolate and MS bracelet sales, employee bake sales, bowling nights, and even making and selling orange balloon animals, Sam’s Club employees raised an amazing amount of money to help people living with MS. In Western Pennsylvania, 10 local Sam’s Clubs raised nearly $33,000 locally for the Western PA Chapter! In addition, Sam’s Club employees became ‘masters of the grill’ at Walk MS: Pittsburgh this year by preparing lunch for nearly 3,500 people! Thank you Sam’s Club for your continued support and involvement in MS Movement in Western PA! n

DO-IT-YOURSELF

FUNDRAISING BY SUSAN COOK

This is an opportunity for people with a deep commitment to the MS cause to raise awareness and critical funds for the MS Movement in new and creative ways. From the MS: Ride to the Rockies, Miles for Smiles and Monster Stomp, people in Western Pennsylvania are committed to fighting MS Now! Creative ideas are supported by the Western PA Chapter through the online web participant center, in which donations can be contributed and marketing materials can be personally created. Also the page provides an overall explanation of the event and important messages from each individual DIY participant. The DIY platform allows participants to expand their fundraising efforts and also access tools, ideas and direction from the National MS Society’s, DIY coordinator. For more information about creating an event please contact Susan at 412-261-6347 the Western PA Chapter. n


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NATIONALMSSOCIETY.ORG | 1-800-344-4867

UPCOMING

MS EVENTS LOBSTER FEST, FRIDAY, SEPT. 28, 2012 (814) 696-1017 Bavarian Hall, Duncansville Dining, Dancing, Auctions and Door Prizes!

WINE TOUR FOR A CURE, FALL OF 2012 (814) 464-2900 The Erie office will be hosting a winery tour, visiting 5 wineries via bus.

UNFORGETTABLE RIDES. UNBELIEVABLE DESTINATIONS.

BIKE TO CREATE A WORLD FREE OF MS! BY HANNAH SPEAR

Whether you are a novice cyclist, looking to get back in the saddle, or a devoted yearly rider, these eventa that you don’t want to miss! Ride or volunteer for a weekend to remember! Register online at nationalMSsociety.org/PAX

KEYSTONE COUNTRY RIDE July 28 & 29, 2012 This two-day loop will begin Saturday morning with cyclists gathering at Hollidaysburg Jr. High School (Altoona) to begin the 150-mile ride across the rolling hills of PA. Join us to enjoy all of the luxuries of State College at the overnight!

COOK FOREST RIVER RIDE September 22. 2012 This one-day bike ride that takes cyclists on a gently rolling route along the Clarion River. There are two route options: 35 miles (perfect for beginner and recreational cyclists) and 60 miles (for those looking for more of a challenge). Join us for this fun fall ride for cyclists of all levels!


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MS CONNECTION: SUMMER 2012

rode to each finish line, and enjoyed an array food and beverages before heading home to recuperate from their incredible weekend accomplishment.

CHALLENGE ACCEPTED

THANK YOU, BIKE MS CYCLISTS BY HANNAH SPEAR

Over the weekend of June 9 and 10, nearly 1,400 cyclists converged at Glick Fire Equipment Company in Zelienople to participate in the 2012 Bike MS: Western PA Escape. Cyclists accepted the challenge and took to the country roads of Western Pennsylvania to ride 150 miles in our fight to stop MS. Despite the grueling hills of Western PA and soaring summer temperatures, our cyclists endured and powered through with determination and perseverance. Our fully supported ride not only connected cyclists to more than 100,000 other riders across the country, but also to a growing movement to create a world free of MS. After heading nearly 80 miles north, cyclists came together and celebrated their accomplishments at Allegheny College. Then, for the first time in Western PA Chapter history, cyclists had the option of taking the traditional day two route to Lake Erie, or returning to our original start line in Zelienople. Approximately half of the cyclists

With over $90,000 in sponsorship alone and cyclists continuing their fundraising efforts until July 6, we are anticipating to raise over $900,000! These essential funds will enble us to serve the 7,500 people living with MS throughout Western PA, while continuing to fund cutting edge research. In yet another challenging year, our riders, volunteers, fundraisers and sponsors showed their dedication by making the 2012 Bike MS: Western PA a success! n

Thank you to our sponsors: Fed Ex Ground (presenting sponsor) SAM’s Club, Armstrong, Comcast, GNC, Biogen, EMD Serono, Diamondback, Dicks Sporting Goods, Pittsburgh Brewing Company, Highmark, Janney Montgomery Scott, UPMC, Acorda, RG Signs, US Food Service, Pella. A special thanks to: Goldwing Road Rider Association members, PA & OH Amateur Radio Operator Clubs and the Western PA Wheelman T he L if t P rofe ssional

AU T H O R IZED D I S T R I B U TO R C H EN E Y S TA I R & W H EEL C H A I R L I F T S

B ar r ie r Fre e St air lif t s 275 Cur r y H ollow Road Pit t sb urgh , PA 1523 6

412- 653 - 6 45 0 1 - 8 0 0 -28 8 - 5 6 2 5 FA X 412- 653 - 6 415


NATIONALMSSOCIETY.ORG | 1-800-344-4867

WALK THIS WAY

SHARE IN THE HOPE FOR THE FUTURE. BY HANNAH SPEAR

The 2012 Walk MS campaign got community members moving and left them moved! A special thank you goes out to everyone who came to one of the 15 Walk MS events throughout 26 counties of Western Pennsylvania. By joining the Walk MS movement, you joined our fight to stop MS. You shared a remarkable achievement with nearly 8,000 other Western Pennsylvania walkers. Most importantly, you made a difference by helping to raise over $800,000 toward research and services for people with MS living in Western Pennsylvania! Below are some of the highlights YOU can be proud of: • Walk MS: Pittsburgh was held on April 22nd, and despite cool temperatures and grey skies, walker spirits could not have been higher! Nearly 3,500 people came out to Point State Park and with nearly $400,000 raised; we’re close to our goal! • Walk MS: Meadville is back! After a one-year hiatus, Walk MS: Meadville came back to the scenic Roche Park on April 29th. Over 100 walkers raised close to $10,000! Thanks for the support! • Erie’s 2012 walk was full of sunshine and enthusiastic walkers on May 5th! Over 600 members

19 of the community came to Presque Isle State Park and raised nearly $50,000! Way to go Erie! • Hollidaysburg Walk MS event was outstanding! On April 22nd, over 800 people were in attendance to help make it one of the largest events yet! • The nearly 400 participants of Walk MS: Washington converged on Tanger Outlets on April 29th and knocked it out of the park raising over $30,000! Walkers got the added bonus of outlet coupons to indulge in some afternoon shopping as a reward for their efforts! We unite as a community during Walk MS to make a powerful statement – to keep us moving toward a cure of multiple sclerosis. Whether you walked, volunteered, donated or fundraised, we thank you for getting involved. You are an important part of the Walk MS movement. Remember, each step you take brings us closer to a world free of MS. We look forward to working with all of you for a great 2013 Walk MS season, and please stay tuned for walk dates, locations and more. n

Thank you to our sponsors: Teletracking (presenting sponsor), KDKA TV, KDKA Radio, SAM’s Club, EMD Serono, Peoples Natural Gas, Betsy Ann Chocolates, The Pittsburgh CW, Acorda, Biogen, Excela, TR&C, Wireless Zone, Eat’n Park, Sincerely Yogurt, Texas Roadhouse, Snyder, Pepsi, Sarris Candies, Toshiba, Mylan, Old Time Coffee, Charwell, Cool 101, Ainsworth Pet Nutrition, Fox 66, Your Erie.com, UPMC Northwest, ABC, Northwestern Rural Electric, Jet 24, Northwest Savings Bank, American Refining Group, Froggy 98, WTAJ, Sunny 106, Imler’s, Papa Johns, Questcor and more!


20 RUN TO STOP MS

MS CONNECTION: SUMMER 2012

UPCOMING

DICK’S SPORTING MS GOLF EVENTS GOODS PITTSBURGH ERIE GOLF OUTING, AUGUST 24, 2012 MARATHON BY HANNAH SPEAR

This year, the Western PA chapter once again joined forces with the Pittsburgh Marathon as a Charity Partner. Thirty seven marathon runners dedicated their participation to “Run to Stop MS” and raised over $32,000! Congratulations runners on being a part of our best year thus far! All 37 runners on the 2012 Run to Stop MS Team have been affected by multiple sclerosis, either personally, with a family member, or close friend struggling with the disease. “This is an inspirational team and I was honored and blessed to meet and run with all of them,” Ellen Stewart, Run to Stop MS Coordinator said. Run to Stop MS is a campaign that allows you to run or walk in a Pittsburgh Marathon event or any running event, in support of our fight to stop MS. Simply register on our website and let us know what event you are participating in. We’ll give you the tools you need to help you “Run to Stop MS”! n

(814) 464-2900 Riverside Golf Course, Cambridge, PA Format is 4 person scramble.

ANNE E. BARNES MEMORIAL TOURNAMENT, SEPTEMBER 6, 2012 (814) 696-1017 Iron Masters Country Club, Roaring Spring

COLLEEN M. MCGUIRE MS CLASSIC, SEPTEMBER 24, 2012 (412) 261-6347 Laurel Valley Golf Club, Ligonier 29th Annual Golf MS, renamed the Colleen McGuire Classic in Honor of the Western Pennsylvania Chapter’s Former President. REGISTER ONLINE AT nationalMSsociety.org/PAX

Heather Mayer, MS, PT

PT / Neurological Specialist The Village at Pittsburgh Mills 724-274-4333 1020 Village Center Drive, Suite N2D 724-274-4303 Tarentum, PA 15084 pghmills@westarmtherapy.com


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NATIONALMSSOCIETY.ORG | 1-800-344-4867

SM


22

MS CONNECTION: SUMMER 2012

FAMILY NIGHT at the ball park

JERRY UHT PARK, ERIE SEAWOLVES

The National MS Society and the Erie Seawolves would like to invite you to Throw Out The First Pitch! Register today for your chance to throw out the first pitch at the Erie Seawolves game on Friday, August 17, 2012.

BY MARY LEE JACKSON

Name:  __________________________

Enjoy the Erie Seawolves as they take on the Harrisburg Senators with an all- you- can-eatbuffet!

Address: ________________________ 

Date:

Friday, Aug. 17, 2012

City: ____________________________ State: ______ Zip Code: ___________ Daytime Tele: ____________________

Time:

Gates open at 5:45 pm

Buffet starts at 6:00 pm

Evening Tele: _____________________

Game time is 7:05 pm

Entries should be postmarked by August 10th to the Erie Office 2115 West 8th Street. Erie PA 16505. Winner will be notified on Monday, Aug.13th.

Location: Jerry Uht Park

110 E. 10th St., Erie, PA 16501

Program Cost: Person with MS: Free

Adults: $15.00 per person

Kids: $10.00 (14 & under) Price includes reserved seating and the buffet dinner!

Registration Deadline: August 10, 2012

QUESTIONS: PLEASE CONTACT MARY LEE AT 814-464-2900

TICKETS FOR BOTH EVENTS WILL BE AVAILABLE AT THE WILL CALL WINDOW ON THE DAY OF THE GAME.


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NATIONALMSSOCIETY.ORG | 1-800-344-4867

FAMILY NIGHT at

PEOPLE’S NATURAL GAS FIELD, ALTOONA CURVE BY PAM DIXON

ORDER TICKETS ONLINE AT nationalMSsociety.org/PAX Name:  _______________________________ Address: ______________________________  City: _________________________________ State: __________ Zip Code: _____________

Enjoy the Altoona Curve as they take on the Trenton Thunder with Fireworks following the game! Date:

Sunday, Aug. 12, 2012

Time:

Gates open at 5:00 pm Game time is 6:00 pm

Daytime Tele: __________________________ r Altoona Curve Game, 8/12/2012 r Erie Seawolves Game, 8/17/2012 Person(s) with MS (free): _____________________________________ _____________________________________

Location: Peoples Natural Gas Field 1000 Park Ave. Altoona, 16602 Program Cost: Person with MS: Free Adults: $7.00 per person Price includes Terrace Level Seating and One Curve Card Per Group! Registration Deadline: August 1, 2012 For more information, please contact Pam at 1 800 344-4867.

_____________________________________ # of Adult Tickets: _______ = $ ___________ # of Kid Tickets: _______ = $ ____________ Total Amount Enclosed: $ ________________ # of Wheelchair Seats: ______ # of Limited Mobility: ______ (can NOT do steps) Return to: NMSS, 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15202


NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047

1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233

MS KILLS CONNECTIONS

CONNECTIONS KILL MS By joining MS Connection, you’ll be able to make meaningful connections when, where and how you want with easy access to the best content and resources the MS community can bring you. You’ll learn about the topics that are most important to you, connect with people you want to connect with, and have expert MS information and opinions right at your fingertips. Visit www.MSConnection.org and register today. n

MS CONNECTION COMMUNITY - WHAT IF EVERYONE WHO CARES ABOUT MS COULD JOIN TOGETHER IN ONE PLACE?


Summer MS Connection