PA Keystone Chapter, Winter Issue 2016 by Jennifer Staab

WINTER 2016 PENNSYLVANIA KEYSTONE CHAPTER

MS CONNECTION NEWSLETTER People with MS can

LIVE THEIR BEST LIFE with more connections to information, resources, and others with shared experiences.

WILLIAM, LEFT, SON, CAR AFICIONADO, VOLUNTEER DIAGNOSED IN 2002

INSIDE 05 THIS ISSUE

08-09 11

CHAPTER: NEWLY DIAGNOSED: ADVOCACY: VOLUNTEER HALL LOVE, MARRIAGE THE FOREFRONT OF FAME AND MS OF CHANGE

12-14 UPCOMING TELECONFERENCES AND PROGRAMS

2 NATIONAL MULTIPLE SCLEROSIS SOCIETY Pennsylvania Keystone Chapter 1-800-344-4867 Pittsburgh Office 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 Harrisburg Office 2000 Linglestown Rd, Ste 201 Harrisburg, PA 17110 Chairman: William Shrader Chapter President: Anne Mageras Editor: Debbie Garrison Design: Jennifer Skinner © 2016 National Multiple Sclerosis Society, Pennsylvania Keystone Chapter Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The 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.

MS CONNECTION: WINTER 2016

WE WALK! FROM THE BOARD PRESIDENT, WILLIAM SHRADER The first Walk MS took place in 1988 in Minneapolis, MN. 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. Now over 300,000 people participate every year nationwide. We all have a reason to walk. Walk for your parent. Walk for your friend. Walk for yourself. WE WALK so people with MS can live their best life with more connections to information, resources and others with shared experiences. WE WALK so the National MS Society can provide the best available information regarding MS treatments, symptom management and opportunities to be engaged. WE WALK so individuals can take control where possible by taking care of themselves and have access to expertise, tools and support to live well. WE WALK to strengthen our research efforts to stop MS in its tracks, restore what has been lost and end MS forever. WE WALK because, together, we are stronger. Beginning in April, we have 24 community Walk MS events happening across Western and Central PA: Pittsburgh, West Shore, Williamsport, Hollidaysburg and State College just to name a few. Check out all of the PA Keystone Chapter Walk MS sites at www. walkMS.org or call 1 800-344-4867. I will be at the Walk MS: West Shore site on April 17th. Join me in making a difference, taking one step at a time at a walk near you. 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 and coworkers. Whatever your experience is with MS, we invite you to join us. Be a part of the

NATIONALMSSOCIETY.ORG | 1-800-344-4867

continued from page 2 Walk MS community. Start a team, join a team, volunteer or be there to cheer participants along to the finish line. Connect with new people, learn about our programs and services, and help us get closer to a cure. Register today. Go to www.walkMS.org or call 1 800-344-4867. Team up with friends, loved ones and co-workers to change the world for everyone affected by multiple sclerosis. Your fundraising drives groundbreaking research, provides life-changing programs and guarantees a supportive community for those who need it most. Together, we’ll go further. WE WALK MS to end MS. n

FROM THE CHAPTER PRESIDENT, ANNE MAGERAS WALK - CREATE IMPACT! OUR VISION: A world free of multiple sclerosis OUR MISSION: People affected by MS can live their best lives, as we stop MS in its tracks, restore what has been lost and end MS forever. Last year the PA Keystone Chapter held 23 WALKS and 14,500 people with a connection to MS joined others to rally together to raise over $ 1.6 million dollars. Imagine the impact we created: • People with MS can live their best lives with more connections to information, resources and others with shared experiences. • Accelerated research breakthroughs that change lives and end MS forever. • Everyone who wants to do something about multiple sclerosis can fuel progress. • The voices of people affected by MS are heard and drive change wherever it is needed. • The Society’s local programs provide education and support, while services promote health and wellness. • The Society reaches out to physicians, nurses and other health care partners to offer resources and tools to maximize quality MS care. Together, we are stronger. Together we will change the world for people with MS. Don’t miss the opportunity to create more powerful local impact. n

4 KAUFFMAN PHYSICAL THERAPY

A NEW PARTNER IN MS CARE

The Pennsylvania Keystone Chapter of the National MS Society is thrilled to announce another new Partner in MS Care. Pictured is Timothy L. Kauffman, PhD, PT, Beth Kauffman, MPT, ATC , Michelle Bolton, PT, DPT from Kauffman Physical Therapy, and Robin Unangst, MSSMC, Director of Services and Activism from the PA Keystone Chapter of the National MS Society. The Partners in MS Care program recognizes and supports quality MS care. The program involves health care professionals in the areas of neurology, mental health and rehabilitation, as well as sites that provide multi-disciplinary, comprehensive MS care. Health care professionals recognized as Partners in MS Care demonstrate knowledge and experience in MS care, have a special interest in treating people living with multiple sclerosis and work closely with the National MS Society. Look for upcoming announcements for more Partners in Care in mental health, allied health and neurological care in the very near future.n 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.

MS CONNECTION: WINTER 2016

NATIONALMSSOCIETY.ORG | 1-800-344-4867

CHAPTER HIGHLIGHT PERSON WITH MS RESEARCH STUDY We would like to invite you to participate in a research study to understand how people with MS engage in physical activity and self-compassion, and how this impacts your quality of like. http://oregonstate.qualtrics.com/jfe/ form/SV_bCnnbuAWCJwKTgF If you are interested or have any questions, please contact the research team at: nerym@oregonstate.edu ADVERTISEMENT

VOLUNTEER HALL OF FAME FOR ADVOCACY Chapter volunteer and MS Activist, Frank Austin, was recently inducted into the National MS Society’s 2015 Volunteer Hall of Fame for Advocacy. A District Activist Leader and member of the Pennsylvania Government Relations Committee, Frank is committed to achieving quality, affordable healthcare for all. As a veteran living with MS, Frank is passionate about MS Congressionally Directed Medical Research Program funding and frequently utilizes social media to advocate for this and other priority issues. Frank annually secures MS Awareness Week proclamations across Pennsylvania, and helps recruit new MS activists at Walk MS. Frank has testified at a Congressional roundtable about the importance of MS data to advance research, and his Congressman frequently sought Frank’s input during the drafting of the 21st Century Cures Act. Frank lived in California when he was diagnosed with MS and moved to Pittsburgh in 2012; in 2008 he was honored as the Pacific South Coast Activist of the Year. Frank was presented with his award at the Society’s Leadership Conference which took place in Fort Worth, Texas from November 5-7. Each year, hundreds of outstanding volunteers and Society staff leaders from across the country join together at the Society Leadership Conference to celebrate, motivate, inspire, educate, share and network so we are equipped for the important work that will end MS. Frank’s dedication and commitment to our mission is inspiring. We applaud him on his much deserved recognition to the Volunteer Hall of Fame and thank him for his service. n

BE AN MS ACTIVIST! We are people who want to do something about MS NOW. Become an MS Activist today! For more information on how you can become an MS Activist contact: Mara Brough, Senior Manager of Advocacy, PA & NJ at mara.brough@nmss.org or visit MSPAKeystone.org.

MS CONNECTION: WINTER 2016

IN THE NEWS

HEALTHSOUTH SEWICKLEY FIRST IN NATION TO EARN MULTIPLE SCLEROSIS DESIGNATION FROM JOINT COMMISSION HealthSouth Rehabilitation Hospital of Sewickley has earned certification for Disease-Specific Care in Multiple Sclerosis Rehabilitation, making it the first hospital in the nation to receive this designation. The Joint Commission’s Gold Seal of Approval™ was awarded to the hospital for its compliance with the organization’s national standards for healthcare quality and safety in disease-specific care. The hospital has now earned certification for healthcare quality for six programs including Stroke, Acquired Brain Injury, Amputee Rehabilitation, Hip Fracture and Parkinson’s Disease. “By choosing to have The Joint Commission evaluate our Multiple Sclerosis disease program, we are making a significant investment in quality of care. The Joint Commission certification ADVERTISEMENT

provides us a framework to take our hospital to the next level and helps create a culture of excellence,” said Leah Laffey, CEO of Sewickley. “This is a major step toward continually improving the care we provide to offer our patients peace of mind knowing they are getting quality care at the industry’s highest standard. We are also very proud to be the first hospital in the nation to earn the Multiple Sclerosis certification for Disease-Specific Care from the Joint Commission.” To earn this certification, the Multiple Sclerosis rehabilitation program underwent an extensive, announced, on-site evaluation by a team of Joint Commission reviewers. The program was evaluated against Joint Commission standards through an assessment of the program’s processes, the program’s ability to evaluate and improve care within its own organization, and interviews with patients and staff. “Our focus is to serve the needs of the greater Pittsburgh community,” said Leah Laffey, CEO of HealthSouth Sewickley. “Each day, our staff works to provide a differentiated level of care and offer services that get patients back on their feet and functioning in their communities. We are honored to achieve this additional distinction.” About HealthSouth Sewickley HealthSouth Sewickley is a 44-bed inpatient rehabilitation hospital that offers comprehensive inpatient and outpatient rehabilitation services. HealthSouth Sewickley holds The Joint Commission’s certification for Disease-Specific Care in three key programs: stroke, brain injury and amputee rehabilitation. Serving patients throughout Sewickley and the greater Pittsburgh area, the hospital is located at 303 Camp Meeting Road in Sewickley and can be found on the Web at demandhealthsouth.com.n

NATIONALMSSOCIETY.ORG | 1-800-344-4867

EMPLOYMENT

8 STEPS TO TAKE IF YOU ARE AFRAID OF LOSING YOUR JOB BY CHRISTINA FOSTER

Are you living in fear that you may lose your job? Maybe you are concerned about your job performance, have a difficult boss, or your company is losing money. Either way, if you’re starting to get an unnerving feeling that your job is on the line, there are things you can do to increase your chances of keeping your job. There are also steps to take to help soften the blow in the unfortunate event you do lose your employment. Here are some steps you can take:

7 in to do whatever is needed. Have a strong work ethic. If possible, look for ways to expand your skills and learn things about other departments. It’s harder to fire someone who is valuable to several areas of a business. 4. Have a Plan B. Just remember, no one is indispensable; so always be prepared for the possibility of a layoff. 5. If at all possible, save. Money in the bank means security. If the worst should happen you will feel more confident that you can handle a layoff. 6. Have your resume updated and ready. 7. Know what jobs are out there. Use your professional network and talk to people in your industry. Find out which companies are doing well and make contact with staff there. 8. Consider ways you can use your skills in similar fields.

If you have an employment question you would like to have answered, such as workplace disclosure, social security benefits, reasonable accommodations, or you are thinking about returning to work and not sure where to start, 1. Be visible. Improve your physical presence we can help. Feel free to pose your questions in the workplace. Be the first one in and last directly to this email address: EmploymentQuesto leave even if it’s just by a few minutes. Sell tions@nmss.org and an Employment Specialist yourself. Don’t be shy about your accomplishwill respond within 48 hours. You can also call 1 ments; make sure that those on top know how 800-344-4867 for more assistance or visit www. valuable you are to the company and to the nationalmssociety.org/Resources-Support/Emcompany’s bottom line. It’s important to be ployment. n viewed as a competent hard worker. 2. Be easy. During an economic decline, employAdapted from Steven Viscusi’s book “How to Bullet ers will be looking to make cuts wherever they Proof Your Job." can. Keep a positive attitude and take changes National MS Society’s United in stride. Be easy to talk to and work with. Way workplace giving Difficult employees are usually the first to go. designation code for Allegheny 3. Be useful. When times are tough more than County only is: 898 ever employers need employees who will pitch

MS CONNECTION: WINTER 2016

NEWLY DIAGNOSED

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.

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.” 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

SUSANNA AND TIM’S WEDDING 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.

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 d u r i n g 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

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 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.”

NATIONALMSSOCIETY.ORG | 1-800-344-4867

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 a 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 folks similar to 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.

THE REDMER FAMILY KEEP S’MYELIN The activity book is colorful and interactive and includes puzzles, games, coloring and more. Together with the parents’ supplement, these resources provide both parents and children ages 4-12 with the vocabulary they need to voice their concerns, dispel misunderstandings and myths about MS, and learn about MS as a family. Keep S’myelin provides an opportunity for children and parents to learn and talk about MS together, reducing isolation and normalizing their experiences. Call the Chapter at 1 800-344-4867 or email keepsmyelin@nmss.org.

Upcoming Educational Program in Spanish: NAEP Managing Bladder and Bowel Symptoms in MS, hosted by the Café con Leche Telephone Support Group March 8, 2016 from 2-2:30 PM ET Register online, or call 1 800-344-4867 and select option 3 (Spanish dedicated line) Deadline to register March 7, 2016 by noon ET

Café con Leche is a telephone-based support group for native Spanish speakers living with MS. This group meets monthly from October to June.

MS CONNECTION: WINTER 2016

ADVOCACY

The story of your own personal journey with multiple sclerosis has the potential to become your most powerful advocacy tool. And advocacy is how people affected by MS create positive change toward living their best life— today. Critical advocacy issues currently at stake include funding MS research and greater access to needed services for people living with the disease.

Since her daughter Alison was diagnosed with multiple sclerosis in 1998, Pat Thomas has kept herself, as she describes it, at “the forefront of change.”

TELLING YOUR STORY

But how do you harness years, or even decades, of your life toward the powerful goal of a world free from MS? To help MS activists best use their personal story, the National MS Society partnered with the Congressional Management Foundation (CMF), which works with citizen groups to educate them on how Congress works. With the CMF’s help, the Society introduced a new session on storytelling to the Society’s Public Policy Conference, which brings together MS activists and legislators in Washington D.C. each March. 7 STEPS TO CHANGE As part of the session, MS activists viewed a 7-minute video on storytelling and then worked on a 7-step guide to crafting a personal story that would translate the impact of public policy on their life.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

THE FOREFRONT OF CHANGE MS ACTIVIST ROBERT TAYLOR WITH HIS WIFE, CHONG. “The process is extremely easy to follow as long as you remember that you’re telling your personal story,” said MS activist Robert Taylor, diagnosed with MS in 2010. “Be honest, graphic and truthful.” Taylor developed and shared his own story “BE HONEST, at the PPC, which you can GRAPHIC AND read online at the link below. TRUTHFUL.” Storytelling is a life-long advocacy tool that you can use for in-district visits, in your statehouses, in letter-writing campaigns and much more. Become an MS activist and create your own story toward powerful change by following the seven steps at www.nationalMSsociety.org/7stepactiviststory. Tell your story today. n

DID YOU KNOW? National MS Society programs are available to anyone affected by MS. To learn about programs available to you, visit MSPAKeystone.org and select “Resources & Support”

She advocates for Alison and other people who live with MS, telling their family’s story to legislators. “Advocacy gave me something really meaningful to do about MS,” said Pat, who lives with her husband Leon in Columbia, Maryland. Each year, the family goes to their state capital of Annapolis and sometimes also to Capitol Hill as part of the Society’s annual Public Policy Conference, to raise crucial awareness. “A lot of [legislators] really didn’t know that much about MS. We changed that,” she says. After she stopped working three years ago, Alison joined her parents on their visits to legislators, making it a family activity. “She’s been able to come and see what her parents were doing all these years,” says Pat. “It has been eye-opening for her.” But the impact was mutual. When Alison shared what it’s like to live with MS every day, Pat said the legislators also have their eyes opened. “To put a face to their policy is so important for them,” she said. In 2013, Pat reached out to her sorority, Delta Sigma Theta Sorority Inc., to create a partnership with the National MS Society. The sorority, which

PAT ON HER WAY TO CAPITOL HILL is committed to public service with a primary focus on the black community, has more than 200,000 members nationwide. In 2015, the sorority deepened their commitment and announced the partnership as a strategic priority. “The real meat of it is to get out the information that [African Americans] have MS,” said Pat. “This is our disease too.” To that end, the sorority is reaching out about MS-related resources and programs, and recruiting volunteers for Society events. (To locate Delta chapters in your area, visit www.deltasigmatheta.org). “Leon and I want to see a cure before we leave this earth,” said Pat. “I hope we do.” Visit www.nationalMSsociety.org/MSactivist to get involved in MS activism. n

TRIBUTES AND MEMORIALS If you want to honor someone living with MS or memorialize a loved one who passed away, please consider naming the Pennsylvania Keystone Chapter of the National MS Society as the charity of your choice for donations. All contributions help to support local programs and services and fund MS-related research efforts. All tributes and memorial gifts are appreciated.

MS CONNECTION: WINTER 2016

NATIONALMSSOCIETY.ORG | 1-800-344-4867

LIVING WITH MS

WEBINAR & TELELEARNING SERIES

UPCOMING MS PROGRAMS: LIVING YOUR BEST LIFE WITH MS Put positive psychology to work in your life! Increase your knowledge of the principle of positive psychology and gain an understanding of how these principles can be used as a strategy for living well with MS.

SUSAN DIAGNOSED IN 1988

BROOKE DIAGNOSED IN 2009

WILLIAM (LEFT) DIAGNOSED IN 2002

Building Your Wellness Strategies A collaboration of MS experts will help you build strategies to live your best life with MS. Each free program features two presenters with time for Q&A. Join us online or by phone on topics including: • Exercise & Cognition • Employment

(4 different topics)

• Treatment Decisions • Research Updates

• Traveling with MS

• Stress & Relaxation

• Managing Spasticity • Mood

• Health Insurance

• Tips for Support Partners & Families • Diet & Nutrition • Sleep

Calls are held on the second Tuesday of each month from 8 to 9:15 p.m. ET All calls are recorded and available for playback.

§§ Tuesdays, May 3 - June 1, 6:00 pm §§ FREE! Six-week teleconferene series, 2 hours/per week §§ Advance registration required. Space is limited, register early

§§ Register at MSPAKeystone.org or 1 800-344-4867

Knowledge is Power: All I Need to Know Living with MS Saturday, May 7 8:30 AM- 3:30 PM Hershey Lodge 325 University Dr., Hershey, PA Various topics and presenters (more information coming soon) Registration will be available at MSPAKeystone.org beginning April 1, 2016 or by calling the PA Keystone Chapter at 1 800-344-4867, option 2.

MAXIMIZING YOUR WELLBEING Three Part Series

Come to one, come to them all! Thursday, March 31: Balance and Fall Prevention Thursday, April 28: Caregiving and Spasticity/Stretching Thursday, May 26: Benefits of General Exercise and Group Instruction Presenter: Chad Kettler, MS PT Drayer Physical Therapy Institute 755 East Main St., Mount Joy, PA 6:30 pm - 7:00 pm: Meet & Greet with light refreshments 7:00 pm - 8:00 pm: Program Registration will be available at MSPAKeystone.org beginning March 1, 2016 or call the Chapter to register at 1 800-344-4867, option 2.

MS CONNECTION: WINTER 2016

CONNECTIONS GROUP

LIVING WITH MS

UPCOMING MS PROGRAMS: • Do you sometimes feel unsteady on your feet? • Do you often use a wall or furniture to help you balance when you walk? • Do you get nervous going down stairs? • Have you tripped or had an unexpected fall? Falls are quite common among people with MS. But there is something you can do to reduce your risk and prevent unnecessary injuries that can impact your well-being. Free From Falls is a the Society's fall prevention program designed specifically for people with MS who are able to walk but may be at risk for falling. You will learn to: • Have an increased awareness of what can contribute to falls • Identify strategies you can use to prevent falls in your home and in the community • Engage in and develop a fitness plan to improve balance, endurance, strength, and mobility to reduce fall-risk • Increase your confidence to avoid falls and manage falls, if they do occur

NATIONALMSSOCIETY.ORG | 1-800-344-4867

In a fun, supportive group atmosphere, expert instructors in rehabilitation, health, and wellness will help you develop a personal plan to maximize your safety and well-being. HealthSouth, Harmarville Wednesdays, April 6 - May 25 6:00 pm - 8:00 pm

The PA Keystone Chapter currently has 32 Connections groups throughout our Chapter area. Visit our the Chapter website at MSPAKeystone.org and click on the link “groups and discussions” for a group listing by county and explore the many different support groups that are available to you and your family. If you cannot attend an in-person support group, we offer support by telephone and online. Please contact our Chapter office for more information. Perhaps you are interested in starting a support/self-help group in your area? For more information about how YOU can become a Connections leader, contact Susan at 1 800-344-4867, option 2 and email Susan at susan.guinter@nmss.org.

Do you have an employment question you would like answered? Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work? If so feel free to pose your questions directly to this email address: EmploymentQuestions@nmss.org and an Employment Specialist will respond within 48 hours.

UPMC Mercy Hospital Tuesdays, April 5 - May 24 6:00 pm - 8:00 pm Oakview Physical Therapy, Greensburg Wednesdays, April 6 - May 24 6:00 pm - 8:00 pm Registration is limited! To register contact Elise at 1 800-344-4867, ext 63223. ADVERTISEMENT

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

Family Fun Day at Knoebels Sunday, May 22nd Park Opens at 11:00 am, lunch at Noon and closes at 7:00 pm

Enjoy the day with family and friends at Knoebels Grove Amusement Park for a day of fun, food and fantasy! Registration opening in April. Please note there will be a fee for this program which will include meal and all day ride passes.

MS CONNECTION: WINTER 2016

LIVING WITH MS/VOLUNTEER OPPORTUNITY

WHAT A DIFFERENCE A DAY MAKES Need a helping hand around the house or yard? We are here to help! If you are living with MS and need a helping hand, the PA Keystone Chapter of the National MS Society wants to help! Volunteers from our chapter will divide into teams and complete one day projects in your home or outside. Projects can include:

• Spring/Fall household cleaning • Window wash (one story home) • Declutter/organization (1 room) • Powerwash exterior of home, patio, deck, etc. • Yard work: raking, mulching, weeding, gardening, etc.

Other services may be provided according to your needs and volunteer skills. Applying for a project does not guarantee that your project will be completed as it depends upon volunteer availability in your area. Applications and back ground checks are required for MS individuals and volunteers. Please note: we are only accepting NEW inquiries. If you have had a project completed in the past, we ask that you do not apply so others may experience What a Difference a Day Makes! Deadline to inquire about a project is April 15, 2016. Projects will be completed between May - October 2016 depending upon volunteer availability and project tasks.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Volunteers/Teams Needed: Looking for volunteers for one-day projects for our “ What a Difference a Day Makes” People living with MS need a helping hand around the house. WHAT YOU CAN DO TO HELP! • Donate your time and talents and become a “What a Difference a Day Makes” volunteer! • Form a Service Team through your faith-group, business, institution, agency or organization. • Donate resources such as equipment, cleaning supplies, work gloves, shingles, power-washers, lawn mowers, rakes, tarps, wheelbarrows, gift cards to area grocery or discount stores, etc. • Donate money to expand the program to serve more people with MS and their families. TO MAKE A DIFFERENCE TODAY CONTACT ROBIN VIA E-MAIL AT ROBIN.UNANGST@NMSS.ORG OR BY CALLING 1 800-344-4867, OPTION 2

2016 MS Seminars Presented by: Dr. Douglas Nathanson,Neurologist, Geisinger Wyoming Valley Medical Center

LEARN MORE AT MSPAKEYSTONE.ORG OR BY CALLING KIMILIE AT 1- 800-344-4867, OPTION 2 OR EMAIL AT: KIMILIE.PUGH@NMSS.ORG

The Pennsylvania Keystone Chapter of the National MS Society is pleased to present a 5-part series on a variety of topics related to MS. Registration is REQUIRED for each night.

Thank you to Donald B. and Dorothy L. Stabler Foundation for its support of this program.

Register today at MSPAKeystone.org or call 1 800-344-4867 The Links at Hemlock Creek, 55 Williamsburg Boulevard, Bloomsburg, PA

Marzoni’s 26 Montage Mountain Road, Moosic, PA

April 6, 2016: MS - A Year in Review June 15, 2016: Vitamin D August 3, 2016: Bowel and Bladder Issues October 5, 2016: MRI - What Does it Mean? December 7, 2016: Exercise & PT

March 7, 2016: MS - A Year in Review May 2, 2016: Vitamin D July 11, 2016: Bowel and Bladder Issues Sept. 19, 2016: MRI - What Does it Mean? November 7, 2016: Exercise & PT

Thank you to Biogen for its support of this program.

18 RESEARCH

A GLOBAL EFFORT The International Progressive MS Alliance, an initiative connecting resources and experts around the world to end progressive multiple sclerosis, has awarded 11 collaborative network planning grants to MS researchers. Last year the Alliance funded 22 projects, all part of an ambitious program that will cumulatively invest nearly $25 million over the next five years in progressive MS research. “The global commitment to collaboratively addressing — and overcoming — the barriers to developing solutions in progressive MS is inspiring the entire world to do more,” says Cynthia Zagieboylo, Chair of the Alliance Executive Committee and CEO of the National MS Society. FOCUS ON SOLUTIONS The one-year planning launch a focused program to accelerate research progress in three key areas: 1) Develop better and more effective therapies for progressive MS; 2) Develop more meaningful ways to measure progression and monitor treatment effectiveness; and 3) Initiate clinical trials for new interventions. Each project selected for funding addresses one of these priority areas and will be directed by

MS CONNECTION: WINTER 2016

NATIONALMSSOCIETY.ORG | 1-800-344-4867

some of the world’s most prominent thought leaders and MS scientists. Current projects selected for support include the development of: a treatment-discovery pipeline for secondary-progressive MS, an MRI biomarker for disability progression for use in clinical trials, novel molecular imaging probes to predict disability progression and evaluate therapies, and a multicenter project on cognitive rehabilitation and exercise. Project awardees will have the opportunity to apply for a full, four-year Collaborative Network award at the conclusion of the 12-month planning grant. “Not only has worldwide attention to progressive MS increased, but progress toward solutions that will change the world for people with progressive MS is accelerating,” noted Dr. Alan Thompson, Chair of the Alliance’s Scientific Steering Committee and Dean of University College London Faculty of Brain Sciences. Visit www.ProgressiveMSAlliance.org for more information. Learn about progressive MS at www.nationalMSsociety.org/progressiveMS. n

Like us: /MSPAKeystone Follow us: @MSPAKeystone Watch us: user/NationalMSSociety

We’re Stronger Together People all over the nation will be moving it during MS Awareness Week, catapulting our movement toward a world free of MS.

There are so many ways to move it toward a world free of MS:

Walk, Bike, Run, Volunteer, Advocate, Educate, Support, Donate and More!

Every action is a demonstration of your commitment to the MS movement. Learn more about the National MS Society PA Keystone Chapter and how you can get involved by visiting our web site at www.MSPAKeystone.org and Join the Movement Today! We are the Pennsylvania Keystone Chapter of the National MS Society. We help address the challenges of more than 14,000 people living with MS, and their families, throughout 56 counties of PA. Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.

JOIN THE MOVEMENT

MS CONNECTION: WINTER 2016

UPCOMING EVENTS:

GEORGE F. HEMPT MEMORIAL MS POLO MATCH August 12, 2016 Hempts Farm Polo Field Mechanicsburg, PA A day of family fun, theÂ Polo Match aims to stomp out MS one divot at a time. Gates open at noon with a children's tent and activities, terrier races followed by the Polo Match at 2:00 pm. Don't miss the traditional stomping of the divots at half time. For more information visit MSPAKeystone.org or contact Debbie at debbie.garrison@nmss.org or call 1 800-344-4867, option 2.

June 4, 2016

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Rumfish Grille Bridgeville, PA blackandgoldcrawfishboil.com

After a few close of friends and relatives of Sonny Bringol, a Louisiana Cajun, had been stricken with MS. He wished he could do more to help them and longed for a cure for his loved ones. From this need came the idea of the Black and Gold Crawfish Boil - marrying together his love of Pittsburgh with his roots in cajun cooking and desire to help those in need.

2015 WALK MS: YOR

D IN 2012

MISSY, DIAGNOSE

2016 LOCATIONS Sunday, April 17th Pittsburgh: Point State Park West Shore: Adams-Ricci Community Park Williamsport: Pennsylvania College of Technology York: John Rudy Park

Sunday, April 24th Beaver: Beaver High School Bedford: Shawnee State Park Dubois: Treasure Lake, Lakeview Lodge & Conference Center Hershey: Hershey Middle School Hollidaysburg: Hollidaysburg Jr. High School Lancaster: Clipper Magazine Stadium Washington: Tanger Outlets

NSTOWN

2015 WALK MS: JOH

Saturday, April 30th Erie: Presque Isle State Park Indiana: Indiana Area Senior High School Uniontown: Uniontown Fire Department Social Hall Sunday, May 1st Bloomsburg: Bloomsburg Town Park Gettysburg: Gettysburg Area Recreation Authority Greensburg: Kirk S. Nevin Arena Johnstown: UPJ - Conference Center Lewisburg: American Legion Post 182

Saturday, May 14th Bradford: Pitt Bradford Blaisdel Hall, Univ. of Pittsburgh Northeast: Kirby Park State College: Medlar Field at Lubrano Park Sunday, May 15th Meadville: Roche Park 2015 WALK MS: GETTYSBURG

Saturday, May 7th New Castle: Cascade Park

2015 WALK MS: BEAVER

PRESENTING LOCAL SPONSOR

PREMIER LOCAL PARTNERS:

MS CONNECTION: WINTER 2016 She used the National MS Society’s Finish MS fundraising program to raise awareness and support. “Finish MS made me stick to my goal,” she says. “I had people invested in my participation - it was really motivating. They believed in me [and] I had to show them I could do it.”

FINISH MS WITH SOME FRIENDS.

WAYS TO GIVE

SOMEONE TO LEAN ON Erin Schatteman is a self-proclaimed “nonrunner,” even though she recently completed the Disney Princess Half Marathon. Diagnosed with multiple sclerosis in 2006, the St. Louis, Missouri, resident at first experienced only minimal symptoms. However, about a year ago, Schatteman relapsed. “The tingling started in my feet and continued to move up my body. I couldn’t carry my kids and struggled even just to walk.” However, she remembers, “I was showered with support by a group of friends who share a common interest, which is our love of Disney.” That support, and shared passion, led to her decision to run the half marathon. However, the road to Orlando would not be easy. “The first run I went on, I only ran a mile and it took me 20 minutes,” says Schatteman. “[But] I knew however hard the road, I had to do it.”

And do it she did, although she admits it was harder than she expected. Schatteman uses disease-modifying therapy and manages the worst of her symptoms through physical therapy, but she still experiences challenges. “I think a lot of people look at me and think it would be easy for me to do this when ‘easy’ is farthest from the case. MS can be an ‘invisible disease’ and people can forget you have it.” Her advice for others with MS who want to run a marathon or a similar endurance event is to “lean on others.” She adds, “Don’t be afraid to ask for help. The Finish MS platform allows you to easily connect with others to create a team, fundraise and update supporters. It’s free, simple to use, and helps you set and achieve a goal.” To learn more about Finish MS, which offers people a chance to work toward a world free of MS while pushing their own personal limits, visit www.finishMS.org. n MILLE FOR MS Patterned after Italy’s famed Mille Miglia open-road endurance race, PA’s Mille for MS fundraiser is set to showcase some of the world’s finest classic and modern sports cars with a 125-mile tour through Central PA. For more information visit www.MilleforMS.com.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

FINISH MS

RUN FOR A REASON AT THE DICK’S SPORTING GOODS PITTSBURGH MARATHON! Thinking about running in the 2016 Pittsburgh Marathon?! GREAT! Do something good for yourself and for your community by Joining the MOVEMENT! Join our Finish MS team, commit to help raise critical funds for those living with MS and enjoy FREE registration for the 2016 Dick’s Sporting Goods Pittsburgh Marathon on Sunday, May 1st. 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! As a member of the 2016 Finish MS Team, we are committed to helping you reach your mental, physical, and fundraising goals. We will provide you with all of the tools you need, while our seasoned fundraising and running coach, Dan, is right alongside you (yes he’s running the marathon too!) to support you along the way. Simply visit MSPAKeystone.org or contact Dan at dan.siegert@nmss.org or 1 800-344-4867 to register or learn more! n LOBSTERFEST FOR MS Enjoy your choice of a whole steamed Maine Lobster or a 10 oz. Filet Mignon. Both meals include a generous portion of steamed shrimp. Corporate Sponsorship Available. Save the Date: September 23, 2016 MSPAKEYSTONE.ORG

BIKE MS

2016

SUPER 4RIDES!

ESCAPETOTHELAKE

June 11-12 presented by

FedEx Ground

keystone country ride

July 23-24

MASON-DIXON CHALLENGE national SPONSORS

August 6-7 cook forest river ride September 17 Seneca Resources presented by

Bike MS will take you further than you’ve ever gone before. It’s not the miles that matter – it’s the unforgettable journey. Join us for an event that’s more than a ride – it’s anticipation, camaraderie, personal accomplishment, and the knowledge that you’re changing lives… making every mile that much sweeter. Don’t just ride, Bike MS 2016, register at bikeMS.org. Bike MS: Escape to the Lake; June 11th - 12th 2 day (one day option available), 150 mile ride Bike MS: Keystone Country Ride; July 23rd - 24th 2 day, 150 mile ride Bike MS: Mason-Dixon Challenge; Aug. 6th - 7th 2 day (one day option available), 150 mile ride Bike MS: Cook Forest River Ride ; Sept. 19th

1 day ride, 35 or 60 miles

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

1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1 800-344-4867

The official registration and financial information of the National Multiple Sclerosis Society, Pennsylvania Keystone Chapter, may be obtained from the Pennsylvania Department of State by calling, toll free within Pennsylvania, 1 800-732-0999. Registration does not imply endorsement.

kids

C AMP

JUNE 16-19, 2016 REFRESHING MOUNTAIN CAMP, STEVENS PA $35 Early Registration: April 1, 2016/$50 Late Registration All regisrations must be recieved by May 1, 2016

The National MS Society, PA Keystone Chapter is pleased to extend an invitationfor a weekend of fun-filled activities and memorable experiences. Kids’ Camp is open to children (ages 7-15) who have a parent or guardian living with multiple sclerosis. Come join children from other chapters of the National MS Sclerosis Society for a weekend of swimming, hiking, crafts, and high-adventure activities. This special weekend offers a great opportunity for kids to connect with one another in a supportive environment. For more information, to donate, volunteer, or to register your child, visit MSPAKeystone.org or call Pam at 1 800-344-4867, option 2. INCREDIBLE LOCATION...TONS OF FUN…DON’T MISS IT!