Fall 2013 western Pennsylvania chapter
MS Connection Newsletter 2013 Bike MS: Escape to the Lake
Western PA Bike MS series 3 Extraordinary rides. One destination. A world free of MS.
INSIDE 03 THIS ISSUE
Living with ms: A Carepartner’s perspective
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vitamins, supplements, and MS
Employment: Need Accommodations?
advocacy: be a digital ms activist
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MS connection: fall 2013
Letter from the president
Remebering a wonderful woman I wanted to take a moment to share with the Chapter membership the sad news about the passing of our former Chapter President, Colleague and Friend of the MS Society, Colleen M. McGuire.
Colleen mcguire pictured on the right with some of the Western PA Chapter staff
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: 2013 Bike MS
Colleen Mary McGuire walked into the local office of the National Multiple Sclerosis Society at the age of 18 years young and 47 years later she retired as the Western PA Chapter President. She started the Respite Care Program in 2000 and further developed the Direct Financial Assistance Program for persons with MS in Western Pennsylvania. Colleen’s leadership at the National MS Society has helped support and fund research activities spanning ALL research stages, including early discovery research, translational research that brings promising ideas forward into actual therapeutic solutions for testing, and clinical trials. The MS Society has a unique approach that drives the pursuit of all promising avenues that can impact those living with multiple sclerosis. In 2011 Colleen’s battle with cancer forced her to walkaway from her passion of helping those affected by Multiple Sclerosis. Colleen lost her battle with cancer on April 28, 2013. Colleen cared deeply about supporting caregivers and if you would like to honor her memory please consider a donation to the Respite Care Program. Donations can be sent to the Western PA Chapter, In Honor of Colleen McGuire, 1501 Reedsdale St., Ste 105, Pittsburgh, PA 15233 or online at nationalMSsociety.org/PAX and make a general donation.
~ Anne Mageras
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Living with ms
A carepartner’s perspective Elizabeth’s husband Dick took early retirement from his job in 2005 to be his wife’s fulltime carepartner. Elizabeth, who was diagnosed with MS in 1995, leads a self-help group for the Society in the couple’s hometown of Summerville, S.C. Here, Dick gives the Society his perspective. How do you provide care? Elizabeth’s disability is a right-side paralysis. She can stand and, with the help of a brace and specially equipped walker, can walk the length of our hallway, which is about 20 feet, before sitting in her wheelchair again. I do for her everything she can’t do for herself. This includes bathing, dressing, injecting her MS medications, meal preparation, housecleaning and whatever else has to be done. What were some initial challenges you faced as a carepartner? Elizabeth’s onset of MS was gradual. I think this gave me a chance to adapt, or to put it better, work out our system of doing things. I help her, but she helps me help her to the extent that she is able. continued on page 4
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 © 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.
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MS connection: fall 2013
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A Care Partners Perspective continued from page 3 Another transition is more subtle. Elizabeth doesn’t give up easily and her determination to accomplish what she sets out to do now becomes my doing driven by her determination. I take her where she “needs” to go, bring her what she needs to have within reach—all things she would normally do for herself. These are not the necessities of living with MS, but the activities and pursuits of an active woman whose MS is an obstacle that I help her overcome. I tell myself that the alternative—if I were not there making it happen for her—would be worse. She would lose interest in life and slouch toward irrelevance. How do you balance your personal needs? My needs are still needs. Left unmet, they could affect the level of care I give Elizabeth, and sometimes the line between needs and wants gets blurred. Regardless, anything that involves my being away from Elizabeth requires working out the logistics of her care while I’m gone. We’re fortunate to have a daughter and her family living nearby. We have close friends we know from church. And we have kind neighbors we view as backup. These are all resources we can call on to fill in when I’m away. I have to resist the idea that I’m the only one who can give her what she needs. And just because MS is there doesn’t mean everything has to go. I ride a motorcycle, serve on my church’s care committee, which gives appropriate care to others in crisis, and work on the vacation mountain home Elizabeth and I began as a dream before MS entered our lives.
Do you have any advice for other carepartners? When MS arrived, I decided that her disease was my disease and I could no more avoid living with MS than she could. I hate MS. MS is my enemy; Elizabeth is not my enemy. If I allow emotion to distort my love for my wife, I could easily shift that hate toward her. No man likes to be directed in the what, where, when and how of his life. But that’s exactly what being a carepartner is about. I’m continually trying to strike a reasonable balance between maintaining my autonomy as a man and doing what needs to be done for my wife’s care. This means not just caring for her physically, but emotionally, intellectually and spiritually. I accept that I cannot do it all perfectly or completely. There are times when she’s just going to have to sit this one out, or not take on this other project, or tell that person she can’t be there for them. And we laugh. When Elizabeth is bossing me around, I have to know it’s the stuff she would be doing if she could, but it can get out of hand. If she’s taking too long ending a conversation and we need to leave, I will push the “on” button of her wheelchair and direct the joy stick to come along. When she needs me to stand by her in a crowd—she feels vulnerable in her wheelchair— I’ll sing “Stand by Me.” Or I’ll sing the opening line to “Bridge over Troubled Water” when she’s feeling depressed or frustrated over her inability to do something. My singing is always good for a laugh. n National Multiple Sclerosis Society’s United Way workplace giving designation code for Allegheny County only is: 898
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6 Living with ms
Vitamins, supplements and MS Dr. Brenda Banwell is the division chief of Neurology and professor of Pediatrics Neurology at Children’s Hospital of Philadelphia and the University of Pennsylvania. After the webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies (watch it at www.nationalMSsociety.org/webcasts), the Society sat down with Dr. Banwell to get answers to your questions about vitamins and supplements that are potentially helpful and harmful for people with MS. Q: What other vitamins or supplements besides vitamin D do you recommend taking on a daily basis to help MS? A: There really isn’t anything else that’s even close to vitamin D in terms of research support for its use in MS. However, I do a blood test of serum levels of vitamin B12 to make sure my patients aren’t deficient. Vitamin B12 deficiency has a negative impact on myelin, which is important for neurological function and is a particular target in MS. In fact, B12 deficiency can actually look like MS in some people, and having low B12 if you have MS can further compromise the brain and spine. That said, healthy people who are eating a regular diet are rarely deficient in B12,
MS connection: fall 2013 and if they have normal levels, taking additional B12 has no proven value. People who are on some extreme diets or don’t eat red meat are more likely to have low levels and should be treated if that’s the case.
response directed at the brain, spine and optic nerves – there is a failure to turn down the immune response when it starts attacking your own body. So, to give someone something that boosts the activity of immune cells would go against what we want to do in MS.
There’s an ongoing debate about the benefits of omega-3 and other fatty acids. I caution parents of kids I look after about not giving too high a dose of fish oils or other oils – when you put too much oil into your gut, you actually absorb other nutrients less well. This can put you at risk of diarrhea and other nutritional problems. I strongly discourage the “a little bit is good, a lot must be great” philosophy. Very few things in nature are meant to be consumed in excessive amounts. Almost every species has what we call “satiety safety.” In other words, they stop when they’re full – and I think that’s a message that we as humans should not override.
When you seek out advice from alternative care providers, I suggest that you ask them what the substance they’re recommending is supposed to do. Ask them why they think that would be effective in MS. Then, ask what they know about the disease. If they believe a supplement would help with immune control or with improvement in myelin or nerve regeneration, then I would advocate that you bring that information and the supplement to your primary healthcare provider so that he or she can analyze the substance and whether or not it would have any potential interaction with other medication you may be on.
Q: What supplements should people with MS avoid? A: There are a lot of claims made for alternative remedies that may or may not be accurate. To be fair, we don’t fully understand the mechanisms for a lot of approved medications either. I recommend avoiding nutritional supplements or holistic remedies that claim to boost the activity of your immune system, which are commonly suggested for people who get a lot of coughs, colds, fevers or illnesses. Theoretically, boosting your immune system would not be something you want to do if you have MS. MS is a disorder that is characterized by an exaggerated immune
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Discuss your own experiences with vitamins, supplements and alternative medicines with other people affected by the disease and hear experts’ opinions on other topics related to living well with MS at www.MSconnection.org. Q: Do you have any other advice for people who are considering complementary or alternative therapies for MS? I think an open, honest and trusting dialogue
between people with MS, their families and friends, and all of their healthcare providers is essential to ensure we’re all on the same page and working together. Where we’re seeing alternate treatments causing harm is when one healthcare provider doesn’t know what the other is doing. Some people with MS seem to feel that their healthcare providers aren’t open to complementary and alternative medicine, but I think that’s changing. When we’re able to have a frank dialogue, I’ve been able to work with families to agree upon what is reasonable and what is potentially dangerous – and ultimately find a course of treatment we’re all happy with. Originally published at www.MSconnection. org/blog. n
Combined Federal Campaign The Western PA Chapter of the National MS Society completed a rigorous application process providing information about auditing, financial, governance and program functions before being approved. The CFC is the largest and most successful workplace fundraising model in the world and the only authorized solicitation of federal employees, both civilian and military, in their workplace. For more information about the Combined Federal Campaign, visit the 3 RIVERS/ PENNSYLVANIA WEST CFC website at http://www.3riverscfc.org/
8 Newly Diagnosed
Working with MS – Is it harder to work with MS? Julie Stachowiak, PhD
Many people with multiple sclerosis find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job.
“I am able to work more when i feel good, less when i feel bad, and take a quick nap if needed.”
MS connection: fall 2013
I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all — when even looking at the computer screen feels like torture. I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome may already need to adjust their time at work. Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the past two years and have been on disease-modifying therapy for less than six months or not at all.
what they found: n
People with higher levels of fatigue and disability all decreased their working hours within 12 months following diagnosis.
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Lower long-term memory scores correlated with a lower number of hours and days spent
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working during the week. n
People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”
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Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.
While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.
Working a balance What does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.
“... so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of ms.”
On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success. n Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about. com. Originally posted at blog.nationalMSsociety. org
tools to work If you’re struggling to keep up at work, but aren’t ready to throw in the towel just yet, visit www.nationalMSsociety.org/ employment or call an MS Navigator at 1-800-344-4867 to learn more about your options and get connected with employment resources in your area. The Job Accommodation Network at www.askjan.org also offers information on a range of subjects for working people with disabilities.
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MS connection: fall 2013
employment
Need accommodations? The MS Society and The Job Accommodation Network can help.
(JAN)
Employment. It’s important to everyone, especially people with disabilities. Society staff members are often asked by people living with MS if they should continue working, whether they should disclose their diagnosis and how to ask for an accommodation that would make doing their job easier. Unfortunately, people with disabilities often leave the work force without exhausting all possible options. Many times, these people are simply not aware of their rights and the resources available to them. Two of the most common reasons people discontinue working include issues around disclosure and accommodations. Under the Americans with Disabilities Act (ADA), an individual has the right to choose whether to disclose their condition to their employer. If an individual decides to disclose their disability to their employer, that individual has the right to request a reasonable accommodation, as long as it does not cause an undue hardship for the employer. Determined case by case, this is an
accommodation that would cause significant expense or business hardship for the employer. Reasonable accommodations are changes to the work environment or to the way an essential function job function is performed. An accommodation allows a qualified individual with a disability to enter or continue employment by removing or modifying on-the-job-barriers to successful job performance. Examples of reasonable accommodations could include: • A flexible work schedule • Working from home occasionally • Adaptive computer technology • Visual aids • Adjustments to desk height to fit a wheelchair underneath Before requesting an accommodation, you must identify your essential job functions and whether or not your MS symptoms are affecting your ability to perform these functions. Essential functions of the job are the fundamental tasks an employee must be able to perform -essentially they are the reason the job exists. It’s a good idea to ask your employer for a copy of your essential job functions. Understanding what accommodations are and strategizing the best solutions for each individual is an important piece of working successfully with a disability. Requesting accommodations is a collaborative process with your employer yet the
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nationalmssociety.org | 1-800-344-4867 majority of the responsibility lies on you, the employee. It is best to be prepared to negotiate and have back-up solutions if the first accommodation you request is denied. Finally, end the conversation on a positive note by explaining how the accommodation will help you be a more productive employee.
Accommodations, Focus on Employment, and more. These publications can be obtained by visiting: http://www.nationalmssociety.org/multimedia-library/brochures/employment-issues/ index.aspx or calling 1-800-FIGHT-MS.
Understanding your rights will help you protect yourself. Ultimately, an employer is looking for an individual with a certain set of skills, so focus on your skills and abilities to determine if you could be a match for a particular job. Finally, know what resources are available and take advantage of them including the following:
Americans with Disabilities Act (ADA) Visit ada.gov for information and technical assistance on the ADA, or call their information line at (800) 514-0301.
The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. Working toward practical solutions that benefit both employer and employee, JAN helps people with disabilities enhance their employability, and shows employers how to capitalize on the value and talent that people with disabilities add to the workplace. For more information visit askjan.org or call 1-800-526-7234 For MS Specific Information check out this article: http://askjan.org/media/MS.html For a sample letter requesting an accommodation visit: askjan.org/media/accommrequestltr.html The National MS Society can provide assistance and support regarding your employment issues. The Society has a variety of brochures that cover accommodations and other employment concerns including, The Win-Win Approach to Reasonable
Additional Resources:
ADA National Network The ADA National Network 1-800-949-4232, provides information, guidance and training on the Americans with Disabilities Act (ADA), tailored to meet the needs of business, government and individuals at local, regional and national levels. The ADA National Network consists of ten Regional ADA National Network Centers located throughout the United States that provide local assistance to ensure that the ADA is implemented wherever possible. Search for comprehensive ADA information, services, products, training and guidelines, or visit your Regional ADA National Network Center website for local events and support. n Advertisement T he L if t P rofessional
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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 dimethyl fumarate (brand name Tecfidera™) by the U.S. Food and Drug Administration (FDA) in March, 2013, we now have 10 diseasemodifying therapies to treat relapsing forms of MS—and more on the horizon. Tecfidera is the third oral therapy approved to treat MS. A related compound, called Fumaderm (dimethyl fumarate and fumeric acid esters), has been used for decades in Europe to treat psoriasis. Tecfidera is a new and different formulation of dimethyl fumarate developed by Biogen Idec specifically to treat MS. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even protect against damage to the brain and spinal cord. Two large phase III studies (the DEFINE and CONFIRM trials) found that Tecfidera significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. Before starting treatment, the FDA recommends a recent (within six months) blood cell count, repeated annually thereafter. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable
MS connection: fall 2013 information sheets at www.ms-coalition.org/ emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments such as Tecfidera. Here are potential therapies to keep an eye on as we move forward into 2013 and beyond. 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 showed in phase III studies to decrease relapse rates, though not as robustly as investigators had 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
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nationalmssociety.org | 1-800-344-4867 relapsing-remitting 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 relapsingremitting MS, is needed to further determine ocrelizumab’s safety and benefits. Research is also underway on potential treatments for progressive forms of MS 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. Current clinical trials 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 diseasemodifying 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 nationalMSsociety.org/ signup, or visit 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. Advertisement 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. • • • • • • •
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Making treatment personal by Dr. Linda Buchwald
One of the most frustrating aspects of treating multiple sclerosis, for both doctors and people with MS, is not knowing in advance how an individual will respond to a particular medication.
MS connection: fall 2013
Finding the “signature” of MS Currently, no doctor can predict which people will respond best to which drugs. However, if a doctor could identify which patients were more likely to respond to treatment, and if there were clues as to how active their disease will be, it would give doctors a tremendous advantage in recommending therapy. MS research now seems to be on the path to do precisely that at some point not too long from now.
Our frontline disease-modifying treatments, the ones we use first in treating someone with MS, all have demonstrable benefit in clinical trials and in real practice. However, not everyone’s MS responds equally to all of these medications. Some people with MS do well with the first therapy they are prescribed in terms of how successful the drug is in reducing relapses and lessening severity of attacks. Others don’t do so well and, after months or years on a particular drug, they may make the decision with their doctor to switch therapies. A new waiting period then begins to see if they will respond with fewer and less severe relapses. Most people with relapsing-remitting MS do eventually find a therapy that works for their disease, although waiting to discover which one can be hard on them emotionally.
A team led by Dr. Philip L. De Jager, a Harry Weaver Scholar of the National MS Society who is affiliated with Harvard Medical School and Brigham and Women’s Hospital in Boston, has discovered that differences in active genes — detectable in blood samples — have the potential to be used to group people with MS into categories that may predict disease course and responses to therapy (Science Translational Medicine, 2012;4: 153ra131). The team related specific MS disease patterns to genes that were active or inactive in blood samples from 141 people who were newly diagnosed with MS and who had not yet been
nationalmssociety.org | 1-800-344-4867 treated. The blood samples contained immune cells known to be important in the disease activity involved in MS. From these cells, the team extracted a type of molecule called RNA, which shows what genes were turned on in the immune cells.
In this way, the team was able to find a “signature” that could predict, early on at least, the likelihood of active disease. Their analysis of the RNA showed that the 141 people with MS could be divided into two groups according to whether particular sets of genes involved in immune function were active or inactive. They then tested the importance of their groupings further by examining blood from 222 people who were being treated with two types of first-line therapy used in MS. The group of people with MS whose immune system genes were more active were significantly more likely to experience a relapse or show other evidence of disease activity (such as on MRI) were compared to the group whose immune system genes were less active, regardless of which treatment they were on.
A first step promises more It’s very important to note that this study was a first step, and there are many more questions to answer, including whether this process can predict a shift from a relapsing form of MS to a progressive form. Further research is needed to
15 verify and refine this approach before it becomes a tool that can benefit treatment decisions made by people with MS and their health care providers. But the study is extremely promising, and could eventually contribute towards “personalized medicine” in MS, which aims to be able to predict the course of an individual’s disease and the best treatment options to stop their type of disease activity. In a disease as complicated as MS, this provides great hope to both doctors and people with MS as they work together to overcome the disease. It is also an excellent example of the growing power of MS research to employ genetic data in a treatment context. n Dr. Linda Buchwald is Chief of Neurology at Mount Auburn Hospital in Cambridge, Mass., and the Medical Director of the Mount Auburn Hospital Multiple Sclerosis Care Center. She is a trustee of the Society’s Greater New England Chapter and Clinical Advisory Committee member. Originally published in the Winter 2012 issue of the Greater New England Chapter’s MS Connection.
October 12, 2013 3:00pm msmonsterstomp.com Neshannock H.S. Stadium New Castle, PA
16 Advocacy
Be a digital MS activist In 2012, MS activists sent tens of thousands of emails, placed hundreds of phone calls, and made hundreds of in-person visits to members of Congress asking for their support on issues important to people with multiple sclerosis and their families. And now there are more ways for MS activists to connect—online.
Driving change Digital MS activists—like all MS activists—want to drive change and do so by amplifying their voice and connecting with elected officials over social media. At nationalMSsociety.org/digiMSactivist, learn how to share your story, connect with other MS activists and build relationships through social media and email. The webpage includes ways to: • Get informed. Become part of the MS Activist Network. Receive e-newsletters and Action Alerts about important pieces of legislation. Send emails with a few clicks of your mouse. • Rise up. Learn where your elected officials stand. Speak out on issues important to you as a person affected by MS.
MS connection: fall 2013
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• Take Action. Build relationships with elected officials by posting on and liking their social media pages and by thanking them on Facebook or Twitter for their supportive actions.
AmeriCorps
• Recruit. Encourage others to join the movement by directing them to our video at ntl.ms/ YouCanBeAnMSActivist, or to www.nationalMSsociety.org/digiMSactivist.
On May 17, Chapter staff members: Brian Sibenac and Ashley Steed, volunteered with Pittsburgh’s Allegheny CleanWays. They helped with “Cleaning up Homewood”. Along with Pittsburgh Health Corps members, they picked up litter and debris in a 2-block area. In 3 short hours, they removed 7 tires and 3,000 pounds of debris! Thank you, Brian and Ashley, for demonstrating the MS Society’s commitment to being good stewards of our community.
Become a digital MS activist and help shape the conversations today that will drive change tomorrow—we promise you, people will listen! n
Dear Colleague “Dear Colleagues” are important tools in supporting legislation that impacts people with multiple sclerosis. They are letters sent by one or two members of Congress to fellow members, usually asking for co-sponsors on a new bill or seeking to influence recipients’ votes on a particular issue. The Society often helps compose letters that support legislation important to people with MS. MS Activists help gain signers through Action Alert emails. This spring, Dear Colleagues were circulated in Congress to support $10 million in funding for the MS Congressionally Directed Medical Research Program, $32 billion for the National Institutes of Health, and $2.5 million for the Lifespan Respite Program. The Congressional MS Caucus and MS activists are working in coalition with other groups to preserve these funding levels for FY 2014. To join the effort, go to www.nationalMSsociety.org/MSActivist.
Cleaning Up! Local Chapter Joins Forces with AmeriCorps, again! In Sept. 2012, the Pittsburgh Health Corps AmeriCorps had a member serve at the Western PA Chapter. Ashley Steed’s role as an Internal Care Manager was serving persons with MS by providing community resources on health insurance, health clinics, Catholic Charity, United Way, legal assistance, shelters, and more. She provided information while attending MS clinic days, health fairs, and visits to support groups. While at the support groups she did presentations on the Affordable Care Act. She also created an 8 week long Financial Wellness Program which helps people create a budget and follows up while providing financial wellness education. Her service ended in July 2013. In Sept. 2013, we are pleased to welcome a new AmeriCorps Member to our team, Christina Lee. Christina will have the same role as an Internal Care Manager while some of her
duties will slightly vary. Christina will have the flexibility to create a project to help the folks that we serve. n Advertisement
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MS connection: fall 2013
campaign highlight
We couldn’t do it D.I.Y. Bar Challenge without our Success partners! Corporate partners move our cause forward, and we would like to take a moment to thank a few of the many corporate partners that enable us to create such wonderful events! Thank you to 2013 Major Walk MS Sponsor, GE Transportation. This new partnership developed out of Erie via the NMSS branch office and the GE Transportation locomotive plant. Pictured in the photo are NMSS Erie Staff Member Colleen Gross, GE Transportation’s Communication Program Manager Charles Deemer, Chapter President Anne Mageras, and NMSS Erie Staff Member Mary Lee Jackson. Not only did GE support the 2013 Walk MS Campaign with a $23,000 sponsorship, they also marketed the event in their Erie plant, and created a team with approximately 20 members. A big thank you to GE Transportation for joining the movement in our fight against MS. n
The Do It Yourself Bar Challenge wrapped up this April and raised over $100,000 for people living with MS in Western PA. Bars from Allegheny, Washington, Westmoreland, Somerset, Fayette, Beaver, Indiana, Erie, Lawrence, Mercer and Butler counties joined to together to help create a world free of MS by selling Pittsburgh sport themed items and other fun holiday knick knacks. Dine in donation days, Golf Tournaments, Steeler Bashes, and other events were coordinated by the participating establishments to help them reach their fundraising goals and qualified for some fun prizes. Thank you to all that participated this year and we will see you in the fall!! If you have an establishment, restaurant or club that would like to participate next year please contact Susan at susan.cook@nmss.org or call the chapter for more information. n Do It Yourself Fundraising 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 golf to galas and motorcycle runs, people in Western PA are committed to creating a world free of MS NOW! To learn more about how you can hold an event to benefit the National Multiple Sclerosis Society, please contact Susan at 412.261.6347 or by e-mail at susan.cook@nmss.org. n
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nationalmssociety.org | 1-800-344-4867
Golf MS Highlights
Erie Golf Outing The 2013 Golf MS Erie tournament held on Friday August 16th and presented by Lakeside Auto Sales was a smashing success! It was a beautiful summer day to hit lots of golf balls for a good cause. 104 golfers showed up ready to swing their clubs towards that coveted first place trophy spot! It was a fun and exciting day all around with various contests and raffles throughout the course. In addition to Lakeside Auto Sales, our other major sponsors include Berman Bedding, HBKW, Inc. & Benefit Administrators, Inc., PSB Industries, Chartwell Specialty Pharmacy, Northwest Savings Bank & Presque Isle Medical Technologies. With the help of all of our sponsors, volunteers and supporters, we raised nearly $16,000 to help in our mission towards a world free of MS. Thank you for believing in our mission and save the date for next year: Friday, August 15, 2014. n
Anne E. Barnes Memorial Tournament The 13th Annual Anne Barnes Memorial MS Golf Tournament was a another success tournament! The Keystone Branch of the Western Pennsylvania Chapter would like to thank all the golfers, committee and volunteers that helped create a world free of MS on Thursday, September 5, at the Iron Masters Country Club in Roaring Springs Pennsylvania. We would like to thank your 2013 sponsors: New Pig, NPC Print & Electronic Documents Solutions and Newborn Enterprises, Inc. n
Register today walkMS.org or 1.800.344.4867 Walk MS connects people living with MS and those who care about them. This community event raises critical funds to support life-changing programs and cutting-edge research.
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MS connection: fall 2013
WOW! What a ride!
Bike mS
Cyclists Accepted the Challenge The 2013 Bike MS: Series
Have you ever been part of something bigger than yourself? Have you ever stepped into a role that was challenging, ultimately scared you, but brought you joy and excitement? We are proudly able say a collective “YES!” We are happy to report on the 2013 Bike MS: Series, including Bike MS: Escape to the Lake, the Keystone Country Ride and the Cook Forest River Ride. The great success of all three of our Bike MS rides enables us to create awareness and raise critical funds that move us closer to a world free of MS. In June, over 1,200 cyclists accepted the 2-day 150 mile challenge of Bike MS: Escape to the Lake. Despite the grueling hills of Western PA, we managed to keep the soaring summer temperatures at bay and cyclists powered through with determination and perseverance. A total of nearly $800,000 has been raised thanks to our dedicated Bike MS: Escape to the Lake participants and supporters. In July, more than 575 cyclists came together to embark on a 2-day, 150 mile loop through the rolling hills of central Pennsylvania. State College provided and unbeatable place to
How one Person with ms got back in the Saddle
by Brigid Sheedy, Altoona, PA
celebrate the first day’s accomplishments while luxurious overnight accommodations and inspiring dinner program geared cyclists up for another full day of riding. More than $480,000 has been raised thanks to our dedicated Bike MS: Keystone Country Ride participants and supporters. Finally, we geared up for our Bike MS: Cook Forest River Ride on September, 21st. Nearly 500 cyclists made their way to scenic Cook Forest State Park to enjoy a one-day ride on a gently rolling route along the Clarion River. With money still coming in, we hope to raise over $100,000! We are forever thankful to all the people who played a part in making the 2013 Bike MS season a success. From cyclists and volunteers, to sponsors and supporters, we are proud to call these people a part of our Bike MS family. n
Special thank you to FedEx Ground, presenting sponsor of Bike MS: Escape to the Lake
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nationalmssociety.org | 1-800-344-4867
It is with sheer joy that I write about a new personal adventure. The Electric Bike from Currie Technologies has given me a whole new way to look at life…..one with the wind blowing in my face. MS is something I deal with, but does NOT define me. There are many different symptoms that are dealt with on many diverse levels at changing time intervals. Wheelchairs, canes, monthly IV infusions, daily and weekly injections, etc. These are all part of living with MS. But, when you love life and want to be an active participant, there are certainly ways to enjoy it.
With the ever unique and distinctive MS fatigue, exercise is usually a challenge. My husband and adult sons are very supportive in all aspects of helping me stay focused on what is really important – Physical, mental and spiritual HEALTH! Even during tough times, we like to have fun together. We have very large extended families and there is always an event or gathering. At one of these
gatherings I was talking with someone that told me about the electric bike. I had never known this existed! Over the years I looked at scooters and mopeds, but didn’t really think this was a viable option. Then, I found a Currie Technology dealer in the Pittsburgh area very close to my parents’ home in Bridgeville, PA. After a visit and a testride, I found the perfect electric bike for me. Once back in Altoona, we reassembled my new e-bike and I immediately strapped on my helmet and took off! I felt like a little kid on Christmas morning! We rode around the neighborhood… and I was WHOO HOOing the whole time. My friend and I went for a 6 mile ride the following day! I will tell you that the IZIP e-bike did most of the work. But, I did work too! I would pedal until my legs couldn’t go any further, then flipped the switch for some help. The bike did the work. Then when I felt I could try again, I switched to back and the bike assisted with pedaling for me. Yes, there were periods of rest for me…as long as I wanted. But I didn’t have to quit. The key point is, I was riding and pedaling when I could. There are many styles and price ranges. The Currie is my choice (www.currietech.com) Do your homework. The National Multiple Sclerosis Society’s motto is now being fulfilled in me….MOVEMENT and FREEDOM!! n
Bike MS: SAVE THE DATES June 7 &8, 2014 Escape to the Lake July 19&20, 2014 Keystone Country Ride September 2014 Cook Forest River Ride
Registration Opening Soon! bikeMSwesternPA.org
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MS connection: fall 2013 Advertisement
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nationalmssociety.org | 1-800-344-4867
Chapter news
annual meeting and health fair
Saturday, November 23, 2013 Embassy Suites 555 Cherrington Parkway Coraopolis, PA 15108
9:30 am:
Registration
10:00 am 12:00 Noon:
Vendor Displays – Visit a variety of community booths, medical equipment companies and much more. Round Table Education Sessions and have an opportunity to learn about DIY Fundraising, Walk MS and Bike MS and other special events. “Ask the Health Care Provider Booth” you will have an opportunity to ask questions regarding symptom management, legal and employment issues, rehabilitation and therapy and much more!
12:00 Noon 2:00 pm:
Sit Down Luncheon with Guest Speaker, Dawn Kumlien. Research/Treatment Update with Local MS Specialists, Board Election, Treasurers Report Persons with MS: Free /// Guests: $20.00
RSVP by November 15, 2013 Call: 800-344-4867 | Online Registration: nationalMSsociety.org/pax | Mail RSVP (below) First and Last Name: ___________________________________________________________ Number attending: ____________________________________________________________ Number of vegetarian dishes: _____________________________________________________ Number of additional guests ($20 each): ____________________________________________ Total enclosed: ________________________________________________________________
Mail RSVP to:
National MS Society, Western PA Chapter, 1502 Reedsdale St, Ste 105, Pittsburgh, PA 15233
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. Each year the NMSS coordinates this program to provide gifts to people living with MS who reside in long term care facilities. Knowing that nursing homes and personal care homes can sometimes be lonely places, we strive to put smiles on the faces of these individuals and let them know that the National MS Society is thinking of them.
Brighten a client’s day! Donate to the Holiday Gift Program!
We would like to challenge you to make a commitment to this great program and to directly impact a person’s life this holiday season!
Learn More or Donate Today! Call Pam at 412.261.6347