SPRING 2013 WESTERN PENNSYLVANIA CHAPTER
MS CONNECTION NEWSLETTER LEAVE NO STONE UNTURNED…
INSIDE 04 THIS ISSUE
LIVING WITH MS: THREE GENERATIONS OF LIFE WITH MS
TO CREATE A WORLD FREE OF MS 06 08 12 LOVE, MARRIAGE AND MS
PROGRESS ON MS THERAPIES
HEALTHY LIVING: IS THIS NORMAL?
2
MS CONNECTION: SPRING 2013
LETTER FROM THE PRESIDENT
NMSS STRATEGIC RESPONSE TO MS 5 “ We develop and align human, business and financial resources to achieve breakthrough results.”
#
IF NOT YOU THAN WHO!
ANNE AND THE WESTERN PA CHAPTER STAFF AT THE 2012 WALK MS: ERIE, JOIN THEM AND THE MOVEMENT AT THE 2013 WALK MS EVENTS!
CONNECT WITH US ONLINE: Western Pennsylvania Chapter nationalMSsociety.org/PAX pax@nmss.org Like us: /MSWesternPA Follow us: @MSWesternPA
In order to achieve this strategic response goal, the Chapter must increase revenue by building strong, active and purposeful relationships with individuals. I recently read a registration report from the 2012 WALK MS and learned that 7% of those that participate in WALK MS have MS and overall 37% of those that walk have a connection to MS. That got me to thinking that people living with MS or those who have a connection to MS present the greatest opportunity to increase participation and grow WALK MS revenue. What if we could come together, even one day a year, to show the power of connections? At Walk MS, our connections become more powerful than the connections MS destroys. This Spring we are offering 16 different opportunities to those living with MS, family members and friends, to join the movement at one of the 16 different WALK MS locations within the Chapter’s 26 county area. Look how far we’ve come! What will the future hold for MS? It’s up to each of us to continue the fight and raise the necessary funds to STOP MS, RESTORE what’s been lost and END MS forever. • 50 years ago scientists discovered MS was an autoimmune disease • 20 years ago, the first disease-modifying therapy was introduced • Today there are nine disease-modifying therapies available This Spring, please join us for Walk MS 2013 — help create a world free of MS.
Be Inspired. Get Connected. Walk MS. Watch us: WalkMSWesternPA.org user/NationalMSSociety
On the Cover: Join Today, Walk MS
~ Anne Mageras
3
NATIONALMSSOCIETY.ORG | 1-800-344-4867
LIVING WITH MS
COOLING PROGRAM BY BRIAN SIBENAC
Do you have heat sensitivity? We can help! People living with MS who struggle with hear sensitivities use cooling products to help cool down in the summer months. The chapter provides different financial assistance programs focused on cooling for those people who symptoms that are affected by the heat. Cooling vests come in different styles, colors, and sizes. There are also cooling accessories which include: scarfs, and wrist bands. The Western Pennsylvania Chapter offers funding for air conditioners too! Funding opportunities are available for: window air conditioners, portable air conditioners, central air conditioners and repairs for air conditioner units in homes and vehicles. Remember, there are funding time and limits, procedures and required paperwork to qualify. Call early before products run out! The summer weather will be here sooner than you may think. Order now and be prepared for the hot summer months ahead! For more information, please contact the chapter for more information at 1-800-344-4867. n
NATIONAL MULTIPLE SCLEROSIS SOCIETY Western Pennsylvania Chapter 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1-800-344-4867 nationalMSsociety.org/PAX Chairman: Douglas Miner, Esq. Chapter President: Anne Mageras Editor: Hannah Spear Design: Jennifer Skinner Š 2013 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
MS CONNECTION: SPRING 2013
LIVING WITH MS
THREE GENERATIONS OF LIFE WITH MS BY APRIL BROWNLEE
“I didn’t plan my wedding when I was seven, so I guess I kind of messed up on that. I didn’t have any idea what goes into it,” laughs 21-year-old Chelsey Anderson, who is looking forward to getting married and settling into life. But for Chelsey, settling in may not mean that things ever actually settle down. She was diagnosed with multiple sclerosis at 16. At the same time that many of her classmates were focused on homecoming and college applications, Chelsey was battling her way back from her first exacerbation - a severe one. “I’m just now getting back to where I was physically before I was diagnosed with MS, and it’s been four years,” she says. “I went from your average varsity volleyball and basketball player to blind and paralyzed from the waist down. My lungs collapsed and my organs started to shut down, all within about seven hours.” But Chelsey’s mom, Kelli, was there, is there and will be
there—every step of the way. She knows MS from the inside out, as she also has the disease, just like her own mother—Chelsey’s grandmother, Pat. That makes for three generations passing down knowledge of the disease to the next. “When I tell people, they don’t believe it. I should’ve bought a lottery ticket the day I got diagnosed,” Chelsey says.
A RICH HISTORY Today, better education, knowledge and diagnostic tools make for earlier diagnoses. Case in point: Chelsey was diagnosed at 16, Kelli at 26, and Pat at 36. And when Pat was diagnosed, there were no disease-modifying treatments. “She told me when she was first diagnosed with MS, they used to put you in a hot bath and have you stand up and then they’d check your symptoms,” Chelsey says.
Their family history is rich, with a deep understanding of what they have already been through and how they’ll face the future head-on together. “I’m glad my mom knew not to baby me,” says Chelsey. “You have to be strong when you have MS. It was tough love, but that has helped me tremendously. Every now and then I’ll feel sorry for myself and my mom will say ‘don’t FROM LEFT, PAT, CHELSEY AND KELLI ANDERSON do that.’”
FACE MS AS A FAMILY
5
NATIONALMSSOCIETY.ORG | 1-800-344-4867 While it’s been a bumpy road over the years, with lots of ups and downs, the three of them find the humor in their unique situation. “We joke that it’s my grandma’s fault that all three of us have MS. Gee, Grandma, thanks,” says Chelsey. For this family, laughter is a superpower. “Always keep moving. Never stop. If you slow down or stop you will turn to stone. And laugh every day. The key to life is laughter,” Kelli says.
THE NEXT GENERATION These days, as Chelsey flips through bridal magazines, looking for the perfect dress to wear for her marriage to Shay, a firefighter, she is mindful of where she’s been - and where she’s going. And one question certainly stands out from the rest: What if someday her child is also diagnosed with MS? “I’d definitely be prepared and stay strong for them like my mom did for me,” she says. “Life is a rollercoaster. I never know what I’m going to get, so I might as well make the best of it. I tell my friends I’m just
going to be the best at MS. Enjoy life. Don’t sweat the small stuff.” And wiggle your toes. “That’s the first thing I do every morning,” Chelsey says. “I wiggle my toes to make sure I haven’t lost that.” Then she heads off either to her job as a nanny or to college, where she is majoring in public relations. She hopes to combine her education, her very personal experiences with MS, and all the things she’s learned from a mother & grandmother who walked the same road long before her. “When I think about writing a book on my life, I just see us all just doing what we’re doing now … staying positive and staying together.” n April Brownlee is a senior development manager for the Society in Amarillo, Texas, where she produces Walk MS and Bike MS events.
LINKS TELECONFERENCE SERIES
NEW ~ 18-35 YR. OLD GROUP!
We are pleased to present a series of teleconferences (April thru May 2013) for clients with MS and their families entitled “LINKS.” Whether you just received a diagnosis of MS or have been living with it for a long time--the goal of this series is to “link” you with information and tips on how to maintain your quality of life in the years ahead.
Is it time for you to CONNECT?
Please call Pam at 412-261-6347 for more information or to register online visit: nationalMSsociety.org/PAX
A new MS Connect Group for 18 to 35 year olds has formed in Oakland. If you are interested in becoming a member and registering or to learn more contact Pam at 412.261.6347 or by e-mail pam.dixon@nmss.org! Meeting Dates: March 12th & April 9th, 2013 Program 6:00 pm-8:00 pm Location: Panera Beard, 5430 Center Avenue Registration is Required: Pam at 412.261.6347
6 NEWLY DIAGNOSED
LOVE, MARRIAGE AND MS BY SUSANNA REDMER
I met my husband Tim about four years ago after a friend had dared me to give online dating a try. I talked online with him for a bit, and then decided to meet him in person since we both wanted to get to know each other better. I thought I’d then tell him my usual spiel about multiple sclerosis just so he’d know what he was getting himself into. “You know I have this thing,” I began. “It’s not a big deal, but sometimes I feel too fatigued to do anything. I take an injection, and oh, it’s called MS,” I finished in a hurry. I expected Tim to say something like, “Never mind about you — I want someone to go surfing with me, run marathons and do adventure biking.” But I never thought in a million years he would smile and say, “Huh, small world. I have MS, too.”
SUSANNA AND TIM’S WEDDING
MS CONNECTION: SPRING 2013 I remember sitting in stunned silence that the same someone I was interested in was also someone who understood what life was like with MS. Tim knew about the injections, the doctor’s appointments, the fatigue and everything else I experienced daily. I didn’t start dating him because he had MS; I dated him because he was everything I had been looking for. He was intelligent, confident, athletic, a record-setting college runner and kind. After just a few months, we realized that we wanted to spend our lives together. When we said our wedding vows a year later, the phrase “in sickness and in health” had a deeper meaning because sickness could strike at any time due to the unpredictability of MS. And soon after we got married, it did.
“YOU KNOW I HAVE THIS THING ... IT’S NOT A BIG DEAL, BUT SOMETIMES I FEEL TO0 FATIGUED TO DO ANYTHING. I TAKE AN INJECTION, AND OH, IT’S CALLED MS.” Within the year, our son, Will, was born. I remember wondering if I could handle the fatigue, the stress of childbirth and coping with a new little baby who could do nothing for himself. I was scared, but my husband said something to me that I’ll never forget. He said, “You’ll always have me at your side.” After a few months, I saw that friends who had had children around the same time were starting to bounce back, training for half marathons and triathlons, and going back to work. On my
7
NATIONALMSSOCIETY.ORG | 1-800-344-4867 side, I was having an MS relapse, on top of the strain of giving birth and being a new mom.
“I WORRIED THAT MY SON WOULD MISS OUT ON THINGS BECAUSE I COULDN’T DO THEM, AND I WAS UPSET THAT I HAD YET ANOTHER RELAPSE.” I felt isolated in my daily struggles. I worried that Will would miss out on things because I couldn’t do them, and I was upset that I had yet another relapse. Through it all I had my husband at my side, and still do. I also had a team of doctors who cared about me and helped me to recover. Since my last relapse, there are some things I can’t do anymore, but I can look at my son and find joy through the way he experiences life. And I also came up with the idea of Café MoMS during my recent relapse. It’s a support
group where mothers who have MS and who have children of any age can go to express their concerns, listen to new research and find support in a nurturing environment with people who know what it’s like to walk in your shoes. Most of all, at Café MoMS, mothers find they’re not alone. n Susanna Redmer is a freelance reporter and the author of the young adult historical fiction novel, The Time the Earth Shook. Originally published in the Wisconsin Chapter’s Summer 2012 MS Connection Newsletter.
DON’T GO IT ALONE If you’re feeling isolated, reach out. Call an MS Navigator at 1-800-344-4867 to find a support group near you, or call MSFriends at 1-866-673-7436 to talk to a peer with MS. You can learn more about MSFriends and other ways to connect with others like you at www.nationalMS society.org/connectionprograms. Moms with MS can join the “Moms with MS” group at www.MSConnection.org and find resources for families at www.nationalMSsociety.org/FamilyMatters. T he L if t P rofessional
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
THE REDMER FAMILY
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
8 RESEARCH
PROGRESS ON MS THERAPIES
BY MEGAN WEIGEL, CNP, ARNP-C, MSCN
In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral teriflunomide (brand name Aubagio®) by the FDA in October, 2012, we now have nine disease-modifying therapies to treat relapsing forms of MS—and more on the horizon. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments. Research on potential treatments for progressive forms of MS is also underway and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Here are the therapies to keep an eye on as we move forward into 2013. BG-12 is an oral fumarate that has been used in Europe for over a decade to treat psoriasis. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even be protective against damage to the brain and spinal cord.
MS CONNECTION: SPRING 2013 Two large phase III studies (the DEFINE trial and the CONFIRM trial, respectively) found that BG-12 significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. In 2012, Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS, and the review process is now underway, with the FDA’s decision expected within the year. Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta 1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders. Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates, though not as robustly as investigators had
9
NATIONALMSSOCIETY.ORG | 1-800-344-4867 hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsingremitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsingremitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits. Clinical trials of treatments for progressive forms of MS are currently underway: these include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.
MAKING CHOICES When we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios.
Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations. However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible. To follow progress on potential MS therapies, sign up for MS eNEWS at www.nationalMSsociety. org/signup, or visit www.nationalMSsociety. org/research. Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MSConnection newsletter. Transpor t U, LLC . Accessible Transp or tation (doc tors appointments/ shopping/social appointments and more) A Western PA Based sp ecialized transp or tation company with a focus on p ersonalized trips. Call today to schedule a trip or inquire about our ser vices! 412. 281. 8350
10
MS CONNECTION: SPRING 2013
TELECONFERENCE SERIES
TELECONFERENCE SERIES
EMPLOYMENT TELECONFERENCE SERIES
THE SPECTRUM OF MS: SPRING 2013 SERIES
We are pleased to present a series of teleconferences on a variety of topics regarding Employment and MS. The series is made up of six teleconferences held on Wednesdays from January through March, 2013.
Join us for a free series of information conference call on a variety of topics for poeple living with MS and their families.
Each teleconference is accessible via a toll-free number. Participate in several calls or just the one that interests you. You will need to register individually for each call you wish to attend. All calls will take place from 7:00 - 8:00 pm EST. n
To register call 1 800.344.3867, option 1. or visit www.nationalMSsociety.org/PAX. This educational series is made available through the collaboration of chapter’s within the national MS Society. You will need to register individually for each call you wish to attend. All calls will take place from 6:30 - 7:30 pm EST. n
February 27 Should I Work?
April 17 Blader and Bowel Issues in MS
March 13 The Impact of Health Insurance
May 8 MS, Sex and Intimacy
March 27 How to Talk About MS
June 12 improving Independence
MANAGING PAIN & SLEEP ISSUES IN MS Monday, March 11, 2013 @ 6 pm John P. Murtha Neuroscience & Pain Institute, Ste 2400, Conemaugh East Hills Community Room 1450 Scalp Avenue, Johnstown, PA 15904 GUEST SPEAKER: DR. AHLSTROM REFRESHMENTS PROVIDED BY PANERA This program will have a video portion, where you will hear from scientists and clinicians who treat symptoms of pain and sleep in MS. It is accompanied by a program booklet providing information from studies completed or in process that add to our body of knowledge about MS Management. Dr. Ahlstrom will be our guest physician to address questions and answers following the video portion of the program. Pre-Registration Required, 412.261.6347 or nationalMSsociety.org/PAX
NATIONALMSSOCIETY.ORG | 1-800-344-4867
11
12
MS CONNECTION: SPRING 2013
HEALTHY LIVING
IS THIS NORMAL? BY LAURIE CLEMENTS LAMBETH
At a recent appointment, I listed my cognitive lapses over the past year. I have mild cognitive impairment; I was tested after 25 years with MS and suspicions that I wasn’t quite up to my old speed of thought. Dividing my attention, shifting focus and finding words have steadily grown more difficult. But three recent events had felt different: sudden, strange, like the seizure I had nearly 20 years ago—misfires, blips, spikes on some tiny chart kept by little scientists in my brain wearing white lab coats and horn-rimmed glasses. The charts ribbon out of their little machines, and when a blip occurs, the scientists rip them from the machines and conceal them in their lab coat pockets. So I asked the physician’s assistant the question we all ask at some point: “Is this normal?”
SUPERMARKET BLIP My husband was somewhere behind me, getting milk while I ducked the supermarket scooter into
a quiet aisle. He approached and said, “Chobani’s on offer.” “Chobani?” I said. “You know, Chobani.” “What . . . is . . . Chobani?” I asked slowly. His face went from quizzical to startled. I play little practical jokes sometimes, and he thought at first this was one of them. But then he realized I was far from joking. I was confused. “You really don’t remember what Chobani is?” he asked. “No.” I panicked. “Is it bread?” I thought of another word that begins with a ch- sound, but couldn’t place it. Ciabatta. Two years before, I had come home from a trip to a writer’s retreat telling him all about the Chobani Greek yogurt I had for breakfast while I was there. So you can imagine his surprise that I did not recognize the name. I wanted to shrink into myself. How strange it felt, as though a shell of silence had formed around me and nobody could come in or let me out.
THE “OH . . .” BLIP I forgot. Please hold. I need to find my list in my purse to jog my memory. Listen to some Muzak while you wait, or talk amongst yourselves. La la la . . . Found it: my list says, “time concept.”
13
NATIONALMSSOCIETY.ORG | 1-800-344-4867 I was scheduled for a haircut and color at 1:00 p.m. It takes me half an hour to 35 minutes to drive to the salon. At 11:45 I was answering email and feeling as though I had plenty of time. I took a shower. Then it was 12:20. I dressed, did my makeup. I took my time. Then I glanced at the clock. How did it become 1:09? There was no way I could make it. I was beyond late. At 12:15 I should have been thinking of leaving. At 11:45 I should have realized I was running late. I couldn’t tie it together. Imagine two strands of yarn. One is the hours ticking by, time itself, and at 1:00 I had my appointment. The other strand of yarn represents the amount of time needed to prepare and drive. The problem is, in my head the two strands of yarn were very far apart, and parallel. I could not connect them. They were loose and felt tiny in my mind, like when my hand is weak or shaky and I can’t grasp a small object.
PARKING BLIP At the vet’s office there’s a steep little hill you need to accelerate to climb. At the top I eased the brake. The car sped up. Why aren’t we stopping, I thought. Something’s wrong with the car. I pressed harder. We headed faster toward the building. Just as I reached for the emergency brake I saw my foot firmly pressing the gas pedal, not the brake. I lifted my foot and slammed on the brake just in time. It took me two days to tell anyone. No harm,
but I was shaken, ashamed, confused. When I asked if having cognitive blips is “normal,” the physician’s assistant paused a moment. “It’s - common,” she said, her voice measured and lifting. And I was grateful: more common than normal, strange but shared. n Laurie Clements Lambeth’s first book Veil and Burn was selected for the 2006 National Poetry Series. To learn more about her work, visit laurieclementslambeth.com.
WHAT THE SYMPTOMS MEAN Unusual symptoms should be reported to your doctor. They may signify MS-related disease activity that your doctor may wish to treat, or they may be unrelated to your MS. For example, changes in cognition may be caused by many different factors, including MS, depression, stress, medications (for example, some bladder medications), or aging. Your doctor may refer you to a cognitive specialist/neuropsychologist to help you determine the cause of whatever changes you may be experiencing. - Rosalind Kalb, PhD, vice president of Clinical Care at the National MS Society
14
MS CONNECTION: SPRING 2013
ADVOCACY
WHAT THE LEGISLATION MEANS BY TED THOMPSON
After intense negotiations in January, the American Taxpayer Relief Act of 2012 was signed into law, which averted the so-called “fiscal cliff,” a drastic convergence of increased taxes and reduced spending. No more crisis, but what does the new legislation mean to people living with multiple sclerosis?
WHAT’S IN THE LAW Some of the health and other provisions in the new law that may impact people living with MS include: • A delay until December 31, 2013, to a scheduled 26.5% cut to Medicare physicians. • An extension to the same date of the Medicare therapy cap exceptions process, which ensures that people with MS can continue to access needed outpatient therapy services. • A repeal of the Community Living Assistance Services and Supports (CLASS) Program, a voluntary long-term insurance program intended to help maintain community residence and independence. However, the law sets up in its place a bipartisan commission tasked with developing legislative long-term care alternatives.
• A delay of two months to across-the-board cuts (the “sequester”) to defense and non-defense programs, including medical research. • A limit on itemized deductions for individuals making over $250,000 a year and families earning over $300,000 per year; however, no limit or cap on charitable deductions was put in place.
MAKE YOUR VOICE HEARD The 113th Congress was sworn in and commenced January 3, 2013. With the across-the-board cuts only delayed for two months and the debt limit not increased, members of Congress will hit the ground running. Sign up at www.nationalmssociety.org/ MSActivist, and follow the MS Activist blog (www.MSactivist.org) and Twitter, @MSActivist to stay tuned for opportunities to weigh in with your legislators over the next several weeks on the importance of protecting medical research and programs like Medicaid and Social Security. n Ted Thompson is the Society’s vice president of Federal Government Relations.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
15
16 Mark your Calendar for the 6th Annual MS Miles of Smiles Run/Walk 2013! BY ELLEN STEWART
Join us on May 19, 2013 at 9:00 am, when we will be hosting our sixth annual "MS Miles of Smiles Race", a run/walk and family event at the North Park Boathouse. Both the 5 Mile and 5K distances will start and finish at the Boathouse. Since its conception five years ago, we are proud to say that Miles of Smiles raised over $83,000, with 100% of the funds going to the National MS Society. This year, our goal is to reach a grand sum of $100,000 and MORE! With your help, I know we can do it! Race Sponsorship information, registration and volunteer sign up are all available on the race website, www.msmilesofsmiles.com
KIDS CAMP, AUG. 15TH-18TH, 2013 The MS Society is pleased to extend an invitation to children (ages 7-15) with a parent or guardian who has MS for a weekend of fun and learning at camp Jumonville. COST PER WEEKEND: « $25 per child (ages 7-15) « SCHOLARSHIPS ARE AVAILABLE « Space is LIMITED so register early! Payment is expected with the completed application by July 1, 2013. If you would like an application or have any questions about Kids Camp, please call Pam at the Western PA Chapter at 412-261-6347 or e-mail pam.dixon@nmss.org
MS CONNECTION: SPRING 2013
The Erie Community Foundation hosts Erie Gives! The National MS Society, Western PA Chapter is excited to partner with the Erie Community Foundation as they hosts an annual, community-wide day of giving called ‘Erie Gives’. This year it will be held on August 13th from 8am-8pm. Donors can make an online donation to their favorite nonprofits by visiting www.ErieGives.org. The Foundation will then enhance each gift by providing a prorated match to each gift made. The total gifts to be divided are to be determined. Stay tuned to learn more! Please note: The minimum gift is $25. No checks will be accepted. Join us and Erie Gives on August 13th from 8am-8pm!
17
NATIONALMSSOCIETY.ORG | 1-800-344-4867
WAYS TO GIVE
A PLACE FOR EVERYONE AT WALK MS BY LAUREL BENNETT
In spring 2011, then 93-year-old Rose Hill embarked upon her third Walk MS in honor of her son Michael, who lives with multiple sclerosis. She wanted to do something to help Michael, and so many others who are affected by the disease, live better lives. To get in shape for the big day, Rose walked laps around her retirement home, determined to be ready for the four-mile Walk MS route. On the day of the event, Rose made it halfway before she started to feel tired. Her family asked if she wanted a ride to the end and her reply was, “No way!” Grandchildren, children and friends held onto her arms and together they trekked toward the finish line. The next year, at 94, Rose registered for Walk 2012 as co-captain for her team, A Rose for a Cure. There is a place for everyone at Walk MS. Family members from grandparents to tiny toddlers, people newly diagnosed with MS, people with progressive MS, friends, coworkers and more all take part in Walk MS events across the nation. Walk MS is for anyone who wants to do something about MS now. Whatever your experience is with MS, we invite you to join us. Be a part of the Walk MS
community. Start a team, join a team, volunteer or be there cheering participants along to the finish line. Connect with new people, learn about our programs and services, and help us get closer to a cure. Go to www. walkMS.org or call 1-800-344-4867 today. Laurel Bennett is a staff writer for Moore Ink. Originally published in the Greater Northwest Chapter’s Winter 2011 MSConnection.
THE FIRST STEP Twenty-five years ago, people living with MS and those who cared about them decided to take their first steps—literally— toward joining the movement to end multiple sclerosis, walking from downtown Minneapolis to the state capitol in St. Paul in the first Walk MS event. They raised $216,000 toward research and service programs for people with MS. The idea quickly spread, with Walk MS events taking place in more cities across the nation the very next year. Today, Walk MS events raise $50 million a year, with more than 330,000 people participating nationwide. Be a part of Walk MS. Every Step. Every Walker. Every Volunteer. They all add up to an experience unlike any other: Walk MS, walkMS.org.
18 2013 MS AWARENESS WEEK
MS CONNECTION: SPRING 2013 • Or visit DoItYourselfMS.org to find out how to create your own DIY event.
MANY WAYS TO JOIN SPREAD AWARENESS No matter where you live, what you do and who you are, there are lots of ways to participate in MS Awareness Week, March 11 to 17. We’ve collected ideas nationwide to share what people have done to raise awareness of multiple sclerosis, but MS Awareness Week is also about expressing your own unique experience of the disease. Connect with others to raise awareness at MSconnection.org or call us at 1-800-344-4867. Here are some ways to get involved.
TAKE ACTION
• Share your story during MS Awareness Week at MSconnection.org. • Raise MS aWEARness by wearing orange. Need something new? Click on “Store” in the top navigation bar at nationalMSsociety.org.
Western PA Chapter’s MS Awareness Week Orange ya wondering? - In honor of the upcoming MS Awareness Week, the Western PA Chapter has decided to “go orange” and initiate a campaign that will leave many PA natives and visitors wondering, “What’s with all the orange?”
• Join the MS Activist Network to contact your legislators and urge them to support issues of importance to you and the MS community. Sign up at nationDuring the week of March alMSsociety.org/MSActivist. 11-17, buildings and sky• Sign up for our MS eNEWS at scrapers all across the City www.nationalMSsociety.org/ of Pittsburgh will be lightsignup for the latest on research, legislation and ing awareness about MS and turning their signs more that impacts people living with MS. and building lights to the symbolic orange color of the National MS Society. By “Turning the City of Pittsburgh Orange” we hope to share, educate JOIN AN EVENT and build awareness about MS and continue to • Learn about Bike MS, register to ride or start a serve the 7,500 people with MS and their families throughout 26 counties in Western Pennsylvania. team at BikeMS.org. • Learn about Walk MS and find a team or event Join Us to “Go Orange” in your Local Area! at walk MS.org. • Call us to find out about other events taking • Decorate a statue or landmark with anything Orange - and post a picture on Facebook page place, such as MuckFest, muckfestMS.org.
19
NATIONALMSSOCIETY.ORG | 1-800-344-4867
• Bring an Orange treat to work or school and post a sign with MS Facts • Ask your Facebook friends to dedicate their status or profile picture with an Orange MS logo • Put up Orange fundraising event posters at your favorite coffee shop, community center, gym, library, etc! Be sure to share your ideas of Orange awareness on Facebook.com/MSWesternPA or by contacting Hannah at Hannah.Spear@nmss.org
UNFORGETTABLE RIDES. UNBELIEVABLE DESTINATIONS.
BIKE TO CREATE A WORLD FREE OF MS! The Western PA Chapter is pleased to announce our 2013 Bike MS events. Our signature rides are a great opportunity to support the chapter and our vision of a world free of MS. ESCAPE TO THE LAKE (ERIE) June 8 - 9, 2013: 2 days, 150 miles Start: Harmony, PA Overnight: Meadville, PA Finish: Conneaut, OH KEYSTONE COUNTRY RIDE July 20 - 21, 2013: 2 days, 150 miles Start/Finish: Hollidaysburg, PA Overnight: State College, PA COOK FOREST RIVER RIDE September 21, 2013: 1 day, 35 or 60 miles Location: Cook Forest State Park, Cooksburg, PA Register to ride or volunteer online at bikeMSwesternPA.org Please e-mail Chris (Chris.Pfeiffer@nmss.org) for more information or to register!
20 RUN TO STOP MS
THERE IS STILL TIME TO RUN FOR A REASON! Thinking about running in the 2013 Dick’s Sporting Goods Pittsburgh Marathon?! GREAT! Do something good for yourself and for your community by Joining the MOVEMENT®! Join our Run to Stop MS team, commit to help raise critical funds for those living with MS and enjoy FREE registration for the Dick’s Sporting Goods Pittsburgh Marathon on Sunday, May 5th. Whether you are looking to run in the full marathon, half marathon, 5k or as part of a relay team – we want YOU to Run for a Reason! Learn more at nationalMSsociety.org/PAX or call 412.261.6347 for more information or you can e-mail Hannah, hannah.spear@nmss.org or Coach Ellen, Ellen.Stewart@nmss.org for a training schedule.
MS CONNECTION: SPRING 2013
Romance eturn to
The 4th Annual Return to Romance was held on Saturday, February 9th at The Calvin House Duncansville, PA. This year’s Honorary of the John Carothers Spirit Award was Kimberly Muffie. Kim was diagnosed with MS in 1996 at the age of 22. Kim, her husband Tom and their two children Josh & Emily reside in Ebensburg. There were 125 persons in attendance and the event raised $20,000. Janet Grove was the winner of the Bedford Springs Raffle, sponsored by Dr. Mark Barnes Chiropractor and All State Insurance-Cullen Sheehan. The winner of the Kranich’s ½ Karat Solitaire Diamond was Babette Gottshall.
A special thank you to the Return to Romance Committee for giving of their time & talent to make this event what it is today! Don’t let MS keep you from your independence! Brant’s Driving School has over 30 years of experience in evaluating and training people with adaptive equipment.
WE NEED VOLUNTEERS! We need a team of 10-15 volunteers to help at a designated exchange/water stop. Please register today! n
•
For Sale: Rear entry wheelchair van 2007 Dodge, 47,800 miles, asking $14,000 Call 412-893-2800
•
• • • •
•
6 cars equipped with hand controls and steering devices One car with reduced-effort steering 2 lowered-floor minivans that are able to be driven from a wheelchair High-tech (EMC) controls including joystick and voice-activated secondary controls Full-size truck with hand controls and Bruno Valet Plus seat 2 Certified Driver Rehabilitation Specialists on-staff Office locations in Pittsburgh, Harmarville, and Johnstown We provide door-to-door-service!
21
NATIONALMSSOCIETY.ORG | 1-800-344-4867
CHECK OUT ERIE’S ANSWER TO IT’S VERY OWN AMERICAN IDOL!
ARE YOU NOTE WORTHY?!
It’s the HOTTEST singing contest of 2013 and you can participate. Singing Mentor Lisa, MS Staff Colleen Whether you’re an individual singer, a duet or even a group, join the and our 1st MS Team member Carol MS Society and FOX 66 TV to compete on the fourth Friday of each month. “Note Worthy” is a truly unique, year long, donation drive to benefit four local non profits while entertaining the masses and spurring some healthy competition between local singers and charities! The Western PA Chapter is privileged and honored to be a part of the event. A HUGE thank you to Andy Gabler and Lakeside Auto for sponsoring us and making it happen. If you think you are “Note Worthy” check out the upcoming casting calls: All Erie locations: • 2/22: Quaker Steak & Lube • 3/22: The Brewerie • 4/26: Oasis Pub Come and support our Note Worthy, National MS Society team or try out to be the next big thing!!! Paid Advertisement
Has Multiple Sclerosis (MS) Affected You? Join us for this free and interactive live event for people with MS, their families and care partners Friday, March 15th
Interact with a leading MS
Behind Wendy's
Space is limited so RESERVE YOUR SPOT TODAY!
expert and others living with MS
ONLINE:
ampyraseminars.com
Learn about a therapeutic option
PHONE:
for MS
Location: D'Imperio's in Monroeville PA Address:
3412 William Penn Hwy Pittsburgh, PA 15235 412-823-4800
Date:
Friday, March 15th
Time:
6:30 pm
1-800-397-8082
Speaker Dr. Stuart Silverman, MD Associates in Neurology of Pittsburgh
Complimentary Food Sponsored by Acorda Therapeutics®, Inc.
AMP601
22
MS CONNECTION: SPRING 2013
NEW IN 2013 BY SUSAN COOK
MuckFest MS: Pittsburgh is so much more than an obstacle course with mud. In the weeks before MuckFest MS, the course is dug out with heavy machinery and a whole lot of water is added. Twenty steel-constructed obstacles are then assembled and placed among the mud-filled trenches, slip-n-slide pits and moon-sized craters. We’re not talking rinky-dink barricades made out of two-by-fours that you find on some mud runs out there. These obstacles are solid-steel behemoths that are transported by semi-trailers and require days, not hours, of prep and construction at each event site. And the fun doesn’t stop when the muckers get hosed off. There’s a party in the MuckFestival area with beer, food, music and front row seats to watch the remaining muckers take on the obstacles and cross the finish line. (By the way, beer and lunch are included in the registration fee.) There’s even a separate, specially-designed playlot for the kids to get dirty in. We call it the Lil’ Muckers area.
For muckers running the course, no special training is required, although a good sense of humor helps immensely, especially on that titanic swing set perched on the edge of a shimmering pool of muck.
MuckFest MS: Pittsburgh will take place on May 25, 2013 at Mines and Meadows ATV Course in Wampum, PA. Please visit www.MuckFestMS.com to register and for more information about fundraising for the National MS Society, Western PA Chapter. We are also looking for volunteers for Day of Event help, to register as a volunteer visit MuckFestMS.com to sign up today.
VOLUNTEER TODAY Your time and talent can make a difference! This is the time of year when the Western PA Chapter needs help at events all across the area! Especially at the Bike MS & Walk MS events! Volunteers are needed at registration, during set-up & clean-up and route support. Please give a few hours or a day to encourage our participants and help spread the spirit of the MS Movement. All it takes is a few hours and smiles to engage in volunteering. If interested please contact Susan at 412.261.6347 or e-mail susan.cook@nmss.org.
23
NATIONALMSSOCIETY.ORG | 1-800-344-4867
STACOOL UNDER VEST
The StaCool Vest™ is the most lightweight, comfortable body cooling system available. It uses high-quality, durable materials and easily replaceable ThermoPaks to cool the body core efficiently. Made from comfortable, breathable Airprene Nontoxic and nonflammable ThermoPaks Spandex sides for additional comfort and flexibility Front zipper for easy dressing and removal Lightweight – adult sizes are 5 to 5½ pounds with hydrated ThermoPaks Wear under clothes or as an over vest Available in a wide range of sizes to fit any body type
MOST LIGHTWEIGHT, COMFORTABLE BODY COOLING SYSTEM
For more information visit us online at stacoolvest.com or call toll free 1-866-782-2665
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047
1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233
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. Walk MS 2013 is presented by:
BE INSPIRED. GET CONNECTED. WALK MS. Walk MS is an experience unlike any other - a day to come together, to celebrate the progress we’ve made and to show the power of our connections. Share the experience with your family, friends and thousands of others who care about someone living with MS. This is our time to united and stand strong. Register now, together we will change lives. n 04.21.13
04.28.13
05.05.13
Bedford Shawnee State Park
Beaver
Franklin (Oil Region) Bandstand Park
Greensburg Kirk S. Nevin Area
DuBois
Hollidaysburg Hollidaysburg Jr. High School
Pittsburgh Point State Park
Beaver Area High School Treasure Lake, Lakeview Lodge
Grove City Premium Outlets Indiana Indiana Area Sr. High School
04.27.13 Uniontown Penn State Fayette
Washington Tanger Outlet
Johnstown Univ. of Pittsburgh (UPJ) 05.18.13 Bradford Pitt Bradford’s Blaisdell Hall
05.19.13 05.04.13 Erie
Presque Isle State Park
Meadville Roche Park Warren Betts Park
WE’VE GOT YOU COVERED IN WESTERN PA!
WALKMSWESTERNPA.ORG