MS Connection, August 2015 by Jennifer Staab

FALL 2015 PENNSYLVANIA KEYSTONE CHAPTER

MS CONNECTION NEWSLETTER WALK MS

BIKE MS

THANK YOU FOR YOUR SUPPORT OF CHAPTER EVENTS!

GOLF MS

MS POLO MATCH

INSIDE 05 THIS ISSUE

08-09 10-11 12

LIVING WITH MS: LIVING WITH MS: AMERICANS WITH THE POWER OF DISABILITES ACT CONNECTION

RESEARCH: UNDERSTANDING PROGRESSIVE MS

ADVOCACY: PERSONAL STORIES DRIVE CHANGE

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 © 2015 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: FALL 2015

YOU BECAME A PART OF THE POWERFUL MOVEMENT THAT WILL HELP END MS FOREVER. FROM THE BOARD PRESIDENT, WILLIAM SHRADER

In the months of April through September, the Pennsylvania Keystone Chapter is focused on providing many opportunities for connections. Each of you has a connection whether it is living with MS, sponsoring an event participant, fundraising for the much needed funds for research or volunteering your time in the office or at an event. Every connection counts to create a better world for those individuals living with and those affected by multiple sclerosis. Spring provided beautiful sunny skies greeting the 14,300 participants at our 23 Walk sites this past April and May. Together we raised close to $ 1,600,000 to fund vital MS Research and Services to 56 counties in PA. Summer quickly flew by us, as we completed 3 Bike MS rides (Escape to the Lake, Keystone Country Ride and Mason Dixon Challenge). Whether peddling 25 or 100 miles, these athletes have demonstrated their desire to do something about MS now, and they are did it from the seat of their bike. Their energy and enthusiasm was contagious and motivated us to stay focused on our mission. We are on target to raise over $1,400,000 with our bike events. There is still time to register for our 4th ride of the season, the Cook Forest River Ride on September 19th. In the Harrisburg area, we held the 10th Annual George F. Hempt MS Memorial MS Polo Match in August, which was a most unique and fun-filled family event aimed to stomp out MS one divot at a time. This day included the children’s tent, some sideline tailgating, the stomping of the divots, the Jack Russell Terrier Races and, of course, the horses and riders who provided us with a thrilling polo match. This year, MS Polo raised over $180,000, bringing the 10 year total to over 1.3 million dollars to support MS research and services.

NATIONALMSSOCIETY.ORG | 1-800-344-4867 continued from page 2 In Pittsburgh, we celebrated summer at Hartwood Acres with Music for MS on Saturday, August 15th. Close to 1000 people came together to make connections through music, food and dance with new friends and family. Fall is right around the corner so watch your emails and mailboxes for information about our Annual Meeting in November. As our 1st year as the Pennsylvania Keystone Chapter comes to a close, I look forward to connecting and celebrating our successes and accomplishments. n

LET’S NOT FORGET ABOUT THE KIDS!

kids

C AMP

The Pennsylvania Keystone Chapter would like to thank everyone who donated to the 2015 MS Kids Camp. It was a successful camp again this year. Over 30 kids from Central and Western PA attended and they enjoyed crafts, hiking, swimming and other camp activities. If you would like more information or would like to help with the 2016 MS Kids Camp, call Pam at 1 800-344-4867. n

AS A COMMUNITY, WE HELP PEOPLE AFFECTED BY MS LIVE THEIR BEST LIVES FROM THE CHAPTER PRESIDENT, ANNE MAGERAS

As Bill Shrader, Board Chair, Chapter Board of Trustees mentioned in his message, the Chapter staff, volunteers, sponsors and event participants have been busy raising money this Spring and Summer with more events to take place in the Fall of 2015. I think it is important to reflect on how the money is disbursed to help find solutions so people with MS can lead their best lives. Funds raised from special events and “Do it Yourself ” activities, support MS Research both nationally and internationally through the NOW Research Campaign. Look for more information as we close in on the Society’s goal to raise $250 million dollars for Research by the end of this year. To date, the NOW campaign has raised, $228,600.00 In each community we serve, the Chapter provides financial assistance for goods and services to assist persons with MS in the management of their disease. Funds are disbursed for Durable Medical Equipment, Adaptations for the Home and Car, Cooling Products, Emergency Financial Assistance for Utilities & Housing, Respite and Home Care Services, Relocation and Safety Assistance for Victims of Domestic Abuse, Exercise and Wellness Activities, as well as Educational, Recreational and Family Programs. We will continue to act with urgency as we deploy our resources and make connections so that each person can be more powerful than the challenges of MS. n

MS CONNECTION: FALL 2015

Thursday, September 10, 2015 7:00 p.m.-8:30 p.m. Join Dr. Jacqueline Nicholas, and Dr. Amy Sullivan for a

Newly Diagnosed Teleconference Finding answers and making decision relies on having the right information at the right time. This program provides answers to your questions and access to information about all of the options available to help you make informed, thoughtful decisions about your health care. The program is geared toward people diagnosed with MS in the past three years and their family members. The speakers for this program are Dr. Jacqueline Nicholas, a neurologist from OhioHealth Neurological Physicians and Dr. Amy Sullivan, psychologist from The Cleveland Clinic.

Call Agenda

7:00 p.m.-7:20 p.m. Diagnosis and Treatment with Dr. Nicholas

7:20 p.m.-7:40 p.m.

LIVING WITH MS

THANK YOU FROM THE PA KEYSTONE CHAPTER The National Multiple Sclerosis Society believes that moving is not just something you can or can’t do, but rather is who you are. This is why we sponsor events like George F. Hempt Memorial MS Polo Match – to raise funds for research, as well as comprehensive programs and services for people with MS – moving closer to a world free of MS. We would like to thank the 2015 participants, sponsors, volunteers and spectators. n

Coping with Your Diagnosis with Dr. Sullivan

7:40 p.m.-8:30 p.m. Questions and Answers Program is free. Call 800-344-4867 to register Deadline is September 3, 2015 This is a collaborative program of the MS Society’s East Region. Program is sponsored by Acorda, EMD Serono, Teva Neuroscience, Genzyme Corportation and Mallinckrodt Pharmaceuticals.

Use the code “MSC” for $5 off registration costs!

National Multiple Sclerosis Society’s United Way workplace giving designation code for Allegheny County only is: 898

North Park

SUNDAY, OCTOBER 18TH, 2015

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.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Join us this fall for the PA Keystone Chapter’s 5 mile race & family walk at the North Park Boathouse in Allison Park!

SUPPORTED BY:

To learn more and register, simply visit MSPAKeystone.org OR call 412-261-6347

AMERICANS WITH DISABILITIES ACT BY MARA BROUGH

July 26, 2015 marked the 25th anniversary of the signing of the Americans with Disabilities Act (ADA) ensuring the civil rights of people with disabilities. The enactment of the ADA established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities. The ADA helped pave the way for much of today’s accessible landscape: curb cuts, ramps, automatic doors, braille on ATM machines, beeping sounds on city street crosswalks, accessible bathrooms in airports and more. The ADA has broken down barriers, increased accessibility, and allowed people affected by MS to live their best lives. The ADA anniversary is an opportunity to reflect

5 positively on a law that has made a great impact on the lives of people with disabilities and our country over the past 25 years. However, our work is ongoing: we have not yet reached complete implementation in Pennsylvania and all of its localities. The full promise of the ADA will only be reached if we all remain committed to this critical law. You can recognize the ADA anniversary by taking the following actions: • Make your ADA recommitment pledge at www.nationalmssociety.org • Join the MS Action Network and advocate for accessible communities and long-term services and supports at mara.brough@nmss. org • Share how the ADA has impacted your life using social media identifiers like #ADA25 & #MSactivist For more information on becoming a MS Activist or the ADA, please contact Mara Brough – Senior Advocacy Manager at mara.brough@nmss.org or 1 800-344-4867 ext 24104. n

MS CONNECTION: FALL 2015

People with MS can

LIVE THEIR BEST LIFE

with more connections to information, resources, and others with shared experiences.

BROOKE, PROFESSIONAL, MUCKFEST MS TOP FUNDRAISER, VOLUNTEER DIAGNOSED IN 2009

Meet our MS Partners in Care Saturday, September 26, 2015 Any time between 10:00 AM - 12:00 PM Neurology and Stroke Associates, 640 East Oregon Road, Lititz, PA 17543

People with multiple sclerosis (MS) receive optimal care and support when strong collaborative relationships exist between healthcare professionals and the Society. Partners in MS Care is a national program that recognizes and supports quality MS Care. Come out and meet our local Partners in MS Care and learn all about the local services available to you. • • • • • •

Ask the Doc: Venkatachalam Mangeshkumar, MD- Neurologic Partner in MS Care Ask the Physical Therapist- Timothy Kauffman, PhD.- Rehab Partner in MS Care See the Infusion Center and meet infusion specialists See the area’s only 3 T MRI and meet specialists Meet local MS Society Staff- Robin Unangst, Director of Services and Activism Refreshments and Goody Bags

Please register at MSPAKeystone.org and click on the calendar link on left or call 1-800-FIGHT MS Option 2 by September 18th. Our thanks to Biogen Idec for their support of this program.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

MS WILKES-BARRE CLINIC

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 Douglas Nathanson, MD from Geisinger Wyoming Valley Medical Center, Wilkes-Barre, PA and Susan Guinter, MSCIR, MSSMC, Senior Coordination Specialist. 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. A Partner in MS Care designated as a Center for Comprehensive MS Care has additionally shown the ability to offer a multi-disciplinary model of care to address the often complex needs of many people with MS. They offer access to a full array of medical, psycho-social and rehabilitation services delivered in a coordinated fashion where providers share common goals for patient outcomes. Look for upcoming announcements for more Partners in Care in mental health, allied health and neurological care in the very near future. n 2015 Telelearning Program Join our free telelearning series for information and guidance on current matters essential to living one’s best life with MS. Featuring different topics with expert(s) presentation by phone and online including open Q&A: PREPARING FOR MS DOCTOR VISITS: • Tuesday, September 15, 2015: 7 pm • Thursday, September 17, 2015: 10 pm Visit www.nationalMSsociety.org/telelearning or call 1 800-344-4867 to reserve your spot. n

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

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”

MS CONNECTION: FALL 2015

During one of their email exchanges, Linda told Mary that she and another woman were going to start an MS support group, officially titled the Metro Area MS Group for People of Color. Mary responded, “That’s great! I wish I could join.”

LIVING WITH MS

THE POWER OF CONNECTION BY MAGGIE FLANAGAN

When people are newly diagnosed, attending their first multiple sclerosis support group meeting may evoke an array of emotions. Some people might feel relief in a community that understands MS, while others might feel sad in confronting their “new life” with a chronic illness, and may feel even more isolated. While such feelings are normal and should be acknowledged, persevering to make even one connection can help people with MS learn more about how to live with the disease and share experiences, even if their lives seem very different on the surface. That was the case for Linda Gill and Mary Hogen, who separately attended their first Society support group meeting in the 1990s shortly after they were diagnosed. While they each continued to attend their local support groups, their feelings of isolation remained. Linda, originally from Detroit and now a resident of Hudson, Wisconsin, is African American. And though MS affects most racial/ethnic groups, it was perceived to be far more common in Caucasians. “Right after I found out about my MS, I connected to the Society,” Linda says. However, no matter how many meetings or educational programs she attended, she was often the only African American in the room.

LINDA (RIGHT) AND MARY (LEFT). Mary, originally from Iowa and a resident of White Bear Lake, Minnesota, is Caucasian and was born hard of hearing. She primarily uses American Sign Language (ASL) to communicate in groups of people and attended support group meetings with a hearing interpreter. She, too, felt disconnected from other participants. One day, both Linda and Mary attended the same program about MS-related fatigue. “There was a big group of us, 22 maybe, and Mary mentioned something about it being hard to make friends,” Linda says. “I understood what she was going through. My husband and I were the only people in the room who were black. So I decided we should be friends.” Linda and Mary exchanged email addresses at the program and it wasn’t long before they formed a life-long bond. In an effort to impress Mary, Linda even decided she would learn ASL. “I wanted to learn how to sign so badly! And then Mary got digital hearing aids. I was so surprised by how she could all of a sudden hear me,” remembers Linda.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

“Isn’t white a color?” Linda replied. “Then see you next Saturday.” Since then, for more than five years, Mary has been attending that support group. For the first few years, she was the only white person, but now there are other white people who regularly attend, as well as some people without MS, including care partners, family members and people affected by other chronic illnesses. “We have so much fun. We will discuss some MS-related things, and we’ll focus on it when it’s necessary, but our group is more about enjoying life together,” says Linda. The group meets the fourth Saturday of every month at the Sumner Library in Minneapolis. Together, attendees go to plays, throw holiday parties, do Zumba, and host barbecues. Most importantly, they laugh — a lot. 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.

KEEP S’MYELIN Keep S’Myelin is published quarterly by the National MS Society for children 5-10 years old with a relative who has MS. The newsletter contains games, fun, and information. Call the Chapter at 1 800-344-4867 or email keepsmyelin@nmss.org.

“Linda is one of the funniest people I’ve ever met. But really it’s just nice to be able to say to somebody ‘I’m too tired to do this’ and not have to make an excuse,” says Mary. “When you’re with people who have MS, and you’re walking very slowly, the people you’re with walk slowly, too. They don’t leave you behind 20 feet. People don’t remember how important that is, to walk together. It’s the understanding that makes it easier.”

THERE ARE MANY OPPORTUNITIES TO CREATE MEANINGFUL CONNECTIONS WITH PEOPLE WHO UNDERSTAND MS. There are many opportunities both online and in person to create meaningful connections with other people who understand MS. To find what is available in your area, call 1-800-344-4867. Also visit www.MSconnection.org, the Society’s online community to connect with other people who are facing experiences similar to you or to your experience. n Maggie Flanagan is a staff member at the Society. Originally published in Upper Midwest’s MS Connection newsletter. ADVERTISEMENT T he L if t P rofessional

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MS CONNECTION: FALL 2015

RESEARCH

UNDERSTANDING PROGRESSIVE MS In a recent issue of Lancet Neurology, top researchers and patient advocates reviewed the latest research on progressive multiple sclerosis, outlining recent advances and urging the MS research community to focus on finding solutions for people who are affected by this form of the disease. The authors reviewed the state of knowledge and recent advances, and make specific recommendations for studying disease mechanisms, developing innovative new ways to conduct clinical trials, and finding better ways to manage symptoms. They also highlighted the efforts of the international Progressive MS Alliance, a growing global initiative to end progressive MS, as a major step forward in achieving these goals. The National MS Society is a founding member of the Progressive MS Alliance. Following are highlights from these papers:

WHAT CAUSES PROGRESSION? Drs. Don Mahad (University of Edinburgh), Bruce Trapp (Cleveland Clinic) and Hans Lassmann (Medical University of Vienna) review an everincreasing understanding of the kind of nervous system damage that leads to progressive disability in people with MS. These include oxidative injury (a process wherein “free radicals,” normal byproducts of bodily processes, cause nerve tissue injury) and

injury to the mitochondria (energy-producing bodies within nerve cells). These injuries, generally thought to be launched by MS attacks, are then amplified by age-related changes in brain activation. As much progress as has been made, however, there is a need for laboratory models that truly represent the chronic stages of injury in MS to move this research forward.

HOW TO TREAT SYMPTOMS? Drs. Anthony Feinstein (University of Toronto), Jenny Freeman (Plymouth University) and Albert Lo (Brown University) review clinical trials of treatments or rehabilitation focusing on MS symptoms. Their main finding is that too few studies involve people with progressive MS only, and that more studies are sorely needed to determine effectiveness in this population. Research on treatments for symptoms also takes on greater significance in the absence of disease-modifying therapies for progressive stages of MS. The authors suggest that testing several interventions at once may launch research in this area forward.

LESSONS LEARNED Drs. Daniel Ontaneda (Cleveland Clinic), Robert Fox (Cleveland Clinic), and Jeremy Chataway (Queen Square, University College London) review the

NATIONALMSSOCIETY.ORG | 1-800-344-4867 frustrating history of negative results from phase III treatment trials in people with progressive MS. Their comprehensive review offers lessons learned and concrete strategies for turning these lessons to positive outcomes. These include the need for better clinical measures of effectiveness, including cognitive testing and patient-reported outcomes; recommendations for better trial designs and conducting trials for at least 36 months; and using advanced imaging tools and spinal fluid biomarkers to track treatment benefits.

OVERCOMING BARRIERS Dr. Timothy Coetzee (National MS Society), Dr. Paola Zaratin (Italian MS Foundation) and MS blogger Trevis Gleason comment that increased focus is necessary in three areas: research collaboration; regulatory innovations (regulatory authorities have less experience with progressive forms of MS and may expect trials that are too onerous to perform); and sustained and increased research funding. The launch of the international Progressive MS Alliance, which just released its second request for research proposals to foster international collaboration, bodes well for better progress toward these goals.

A MUCH-NEEDED FOCUS Dr. Alan Thompson (University College London) states, “Every time a new treatment for relapsingremitting MS comes on the market, it serves to remind people with progressive MS that they are still waiting.”

innovative trial design. He also encourages new approaches to rehabilitation. He notes that the Progressive MS Alliance, for which he serves as Chair of the Scientific Steering Committee, is focusing on this daunting challenge with a mission to develop effective treatments and symptom management.

THE LAUNCH OF THE PROGRESSIVE MS ALLIANCE BODES WELL FOR BETTER PROGRESS TOWARD RESEARCH GOALS. The series of articles published in the Lancet point to some significant progress made in addressing the challenges of progressive MS. However, it also points to the urgent need to solve these challenges. The Progressive MS Alliance is putting the framework and funding in place to help drive this research forward, with the sole objective of improving the lives of people with progressive MS. n To learn more about the Progressive MS Alliance, visit www.progressivemsalliance.org.

Join us at the Women on the Move Luncheon September 29, 2015: Pittsburgh’s Grand Hall at The Priory

To purchase tickets or Dr. Thompson says that the most fundamental for more information issue in developing new treatments is the need to visit our website at understand the events that lead to the development MSPAKeystone.org. of progressive MS. A close second is the need for

MS CONNECTION: FALL 2015

ADVOCACY

PERSONAL STORIES DRIVE CHANGE BY KARI RINKER

Everyone with multiple sclerosis has a personal story, an experience or collection of life events and circumstances that influence who he or she is, and the unique perspectives that he or she holds. Living with MS is an integral part of that story. MS alters lives. It can transform everyday activities into challenges. MS activists share their stories in the hope that they will inspire positive change — not just for them, but for all people living with MS. Their collective voices raise awareness about MS, educate public officials and drive change. Their stories come in many forms. Some MS activists email their legislators when they receive MS Action Alerts, adding a personal note to share their individual perspectives. Some join their state’s Government Relations Committee to drive advocacy work in their community or become District ADVERTISEMENT

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Activist Leaders and build personal relationships with their elected officials. Others attend MS State Action Days at their state capitol, emphasizing the importance of MS advocacy priorities. And some people travel to Washington, D.C., to share their stories at the National MS Society’s annual Public Policy Conference.

VOLUNTEER

Here are some of the voices and stories of MS activists:

Thank you to the many volunteers who represented and created awareness of the Lancaster Golden Corral Scholarship Program. This scholarship program is offered to qualified students who have MS or who have a parent with MS, to aid in achieving their academic potential. Each day, throughout the month of August volunteers encouraged restaurant patrons to support the scholarships program.

“I am a man of science, a person of faith and a fourth-generation Kansan. MS has been part of my family’s story for more than 15 years. I am an MS activist because I think it matters.” - Dr. Randall Rock, Kansas “As an MS activist, I have visited our state capitol the past eight years, discussing issues with our representatives and senators. It is this goal of finding the cause and cure that keeps me going back and informing our representatives and asking for help, lending my voice to the Society and all whom we serve.” - Don Garrett, Missouri “My mother was diagnosed with MS in 1979. I was diagnosed in 2000. Seeing the differences between the disease-modifying therapies that are available to me today, compared with the lack of any available treatment options for my mother is motivation for me to be an MS activist. There is so much exciting MS research in the pipeline; it is up to us to keep the momentum going!” - Linda Black, Nebraska Kari Rinker is the Society’s senior manager of Programs and Advocacy, Mid America. Originally published in Mid America’s MS Connection newsletter.. n Share your story and become an MS activist. Visit www.nationalMSsociety.org/advocacy.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

THANK YOU VOLUNTEERS!

To help remove barriers for students impacted by MS, Golden Corral launched this initiative in 2011. Since then, participating Golden Corral restaurants in the Carolina Chapters of the National MS Society have raised $288,000 and awarded 129 students with Golden Corral Scholarships. Stay tuned to learn how much was raised for the scholarship program here in the PA Keystone Chapter. n MS shouldn’t stand in the way of an education! Thank you for your support! ADVERTISEMENT

FUNDRAISING OPPORTUNITIES

October 3, 2015 Lake Erie Wine Country Tour

Wine Tour for a Cure Learn more at: MSPAKeystone.org

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

MS CONNECTION: FALL 2015

SCHOLARSHIP

2015 AWARD RECIPIENTS Along with the emotional toll, the financial toll that Multiple Sclerosis can have on a family can be devastating, which can make funding a college education even more difficult. Each year, the National Multiple Sclerosis Society awards scholarships to individuals who are personally, or have a parent affected by MS. Our Scholarship Program aids students in pursuing a higher education. Congratulations 2015 Scholarship Recipients! We wish you well in all your future endeavors! For more infomraton on the scholarship program, please visit the website at www.nationalmssociety. org/scholarship. n

Drew Baily

Alyssa Burdett

Jillian Cardwell

Nicholas De Vito

Eliza Dewey

Lauren Echols

NATIONALMSSOCIETY.ORG | 1-800-344-4867 Shiann Martin

Erin Mulhearn

FUNDRAISING OPPORTUNITIES

SAVE THE DATE FOR THE 2015 LOBSTERFEST FOR MS Friday, September 25, 2015 $75 per person Bavarian Hall, Altoona

Kelsey Henry

Brianna Hudock

Neil Ostrander

Salvatore Polit- Moran

Your choice of a whole steamed Maine Lobster or a 10 oz. Filet Mignon. Both meals include a generous portion of steamed shrimp. For more information, visit our website at MSPAKeystone.org. ADVERTISEMENT

Jude Polit-Moran

Emily Manning

Ashley Kruise

Mardi Steinitz

Taylor Stobert

Rachel Marrow

Taylor Wheeler

Stuart Yorty

MS CONNECTION: FALL 2015

NATIONALMSSOCIETY.ORG | 1-800-344-4867 AREA (CITY)

TIME

MEETING LOCATION

CONNECTIONS GROUP

CUMBERLAND COUNTY Boiling Springs

4th Monday 6:30 p.m.

IN-PERSON MEETINGS & PHONE SUPPORT

CUMBERLAND COUNTY Mechanicsburg ELK COUNTY St. Mary’s

4th Tuesday 6:00 p.m.7:00 p.m. Last Wednesday 6:00 p.m. 1st Wednesday 6:00 p.m.

Otterbein United Methodist Church of Boiling Springs 647 Forge Road, Carlisle www.ottumc.org/mssupport HealthSouth Rehabilitation Hospital 175 Lancaster Boulevard St. Mary’s Middle School Library 977 South St. Mary’s Road LECOM Medical Fitness & Wellness Center, 1st Floor Conf. Rm, 5401 Peach Street

SELF HELP GROUPS

AREA (CITY)

TIME

MEETING LOCATION

ALLEGHENY COUNTY 3 Tuesday East Hills/Pittsburgh 6:00 p.m.

Bakery Square 6425 Penn Ave, Suite 401 Pittsburgh

ALLEGHENY COUNTY Sewickley

HealthSouth Sewickley 303 Camp Meeting Road Danny Shirey Room Please contact this group leader for meeting details.

ALLEGHENY COUNTY Oakland Young adults 18-35 ALLEGHENY COUNTY 3rd Tuesday Squirrel Hill/Pittsburgh 10:00 a.m.

Jewish Family & Children’s Service - 5743 Bartlett St

ALLEGHENY COUNTY 2nd Thursday Pleasant Hills 2:00 p.m.

Panera Bread Southland Shopping Center 623 Clairton Blvd King’s Restaurant 3000 6th Ave

BLAIR COUNTY Altoona BUTLER COUNTY Mars CAMBRIA Johnstown Laurel Highlands

3rd Saturday Noon, Every other month 3rd Thursday 6:00 p.m. 2nd Monday 6:00 p.m.

CENTRE COUNTY Pleasant Gap

4th Tuesday 6:00 p.m.

CLARION COUNTY Clarion

Last Tuesday 6:30 p.m.

Treesdale Community Center 1 Treesdale Commons John P. Murtha Neuro Center 1450 Scalp Ave HealthSouth Nittany Valley Rehabilitation Hospital 550 W. College Avenue First Presbyterian Church 700 Wood Street

CONTACT INFORMATION Joe Ruffing (412) 965-7780 ruffing3@icloud.com

ERIE COUNTY Erie

3rd Wednesday 10:00 a.m. 1st Tuesday 6:00 p.m.

CONTACT INFORMATION Sara Graham (717) 249-8288 www.keyzine.com/ mssupport Audrey Coulson (717) 486-3596 Fawn McMackin (814) 335-5771

mcmackin@windstream.net

Linda Kirik

lindakirik2@hotmail.com

United Brethren Church King & 2nd St.

Cheryl Wauls (717) 264-9064

Washington Health Center Greene (Waynesburg Hospital) 2nd Floor Guesman Room 350 Bonar Ave First Christian Church Social Hall, 500 Water Street Allied Services Building 475 Morgan Highway

Angela Baker

Call the Chapter 800 344 4867 for details

FRANKLIN COUNTY Chambersburg

Lizzie Anderson (937) 269-5455

GREENE AND FAYETTE COUNTY Waynesburg

Kelli McElhinny (412) 904-5963 kmcelhinny@jcfspgh.org Dorrie Baurnes (412) 461-1837 dorrieB4@hotmail.com Deb Hockenberry (814) 941-3786 sasha1119@yahoo.com Debi Vasbinder (724) 612-5214 Cindy Slaventa (814) 535-6249 Angela Gorzelsky (814) 599-0880 Pat Ellenberger 814-692-5087

INDIANA COUNTY Indiana

3rd Thursday 7:00 p.m.

LACKAWANNA COUNTY Scranton LANCASTER COUNTY Lancaster L.A.M.S. LANCASTER COUNTY Lancaster “ADAPT” LANCASTER COUNTY Elizabethtown “Look Up”

2nd Sunday 2:00 p.m.

1st or 2nd Thursday 11:00 a.m.

Hometown Family Restaurant 1 N Londonderry Square Palmyra

Cheryl Lynch (717) 838-7212

Ken Barron (814) 927-6952 barron219@msn.com

LEBANON COUNTY Lebanon Hometown Believers LEBANON COUNTY Lebanon

2nd Tuesday 6:30 p.m. Even months

Palmyra Nursing Home Activities Room 341 N. Railroad St., Palmyra

Cindy Laverty (717)944-7155 (860) 729-5967 cell

em.and.sequins@gmail.com

1st Tuesday 7:00 p.m. 1ST Monday 10:00 a.m. 2nd Tuesday 11:00 a.m.

Lancaster General Health Campus, 2100 Harrisburg Pike, 3rd Floor Conference Rm Pheasant Ridge Community Center, 209 Longwood Ct. Masonic Village Health Care Center One Masonic Drive

msconnections@mail.com (724) 833-2542 text or leave voice mail

Wendy Deyarmin (724) 479-3783 wdeyarmin@yahoo.com

Derek Raines (570) 342-5526 derekrainman@gmail.com

Vahid (Vic) Tahmasbi (717) 871-1241

Greg Bomberger (717) 682-3489 Alexis Henry (717) 361-7447

MS CONNECTION: FALL 2015

AREA (CITY)

TIME

MEETING LOCATION

LUZERNE COUNTY Wilkes Barre

2nd Saturday 10:00 a.m.

Heinz WB Rehab Center, 150 Mundy Street, Wilkes-Barre Twp. 18702 (Ambulance Entrance Door)

MONTOUR COUNTY Danville POTTER COUNTY Coudersport UNION COUNTY Lewisburg

WARREN COUNTY Warren WAYNE COUNTY Honesdale WESTMORELAND Greensburg

YORK COUNTY York MS HOPE CLUB YORK COUNTY York YORK MAKING STRIDES

*Call leader for meeting details *Call leader for meeting details 2nd Tuesday 6:30 p.m.

1st Wednesday 6:00 p.m. *Call leader for meeting details 4th Thursday 6:30 p.m.

2nd Thursday 6:30 p.m. Groups meet April through October 1st Tuesday 10:00 a.m.

Grandview Health Home 49 Woodbine Lane, Danville PA Coudersport Alliance Church 7th Ave Coudersport Evangelical Community Health Education Center Route 15 Staples Plaza One Hospital Drive Warren Library 205 Market Street Slater Room Wayne Memorial Hospital Conference Room #3 601 Park Street Hempfield Township Municipal Building 1132 Woodward Drive United Church of Christ 509 Pacific Avenue

The Country Meadows Retirement Community 2760 Pine Grove Road

CONTACT INFORMATION

SUPPORT BY TELEPHONE

Dawn Bozek (570) 466-1004 DawnBozek@msn.com Joan Milewski (570) 793-6729 joan.milewski@gmail.com

Sister Maria Theresa Hronec (717)-919-4247 Dean Dow (814) 274-7296 deandow@gmail.com Margie Reier (570) 713-8606 Jody Zimmerman (570) 523-9171 Amy Jo Ranson (814) 726-1049 ajrmom@verizon.net June Utegg (570) 253-4855

Cynthia King (724) 744-7567 celaine@windstream.net Maria Keto m_keto@yahoo.com Susie Harro (717) 764-9082 Dee Sands (717) 292-5489 Shelly Butcher (717) 428-1263 Judy Smith (717) 846-9761

NATIONALMSSOCIETY.ORG | 1-800-344-4867

Adams Lancaster Dauphin/Cumberland *Newly Diagnosed

Lynn Moody (717) 642-5123 Lcm4gem@hotmail.com Juliette Zaengle (717) 222-1299 Deb Evans (717) 737-3372

FUNDRAISING OPPORTUNITIES

Golf Outing Annual MS Golf Tournament, Colleen McGuire Memorial Tuesday, September 15, 2015 Laurel Valley Golf Club Ligonier To learn more about this event or other MS Golf events visit: MSPAKeystone.org

We have good news for those of you who would like to return as a National MS Society runner for the 2016 Dickâ&#x20AC;&#x2122;s Sporting Goods Pittsburgh Marathon on May 1st. As of August 17, charity registration officially opened! To register for the 2016 Marathon, visit MSPAKeystone.org and click on Fundraising Events on the left panel.

20 EMPLOYMENT

LEAVING A WORKPLACE BY CHRISTINA L. FORSTER

Options When You Leave the Workplace The National MS Society encourages all individuals with MS to remain in the workforce as long as possible and explore all options before leaving. However, there may come a time when an individual with MS finds it is time to separate from the workplace. It can be a confusing and stressful time and difficult to understand all the options. Leaving the workforce may cause individuals to have several questions including: does my employer offer private disability, can I apply for Social Securty Disabitlity Insurance (SSDI), and how will I financially support myself and my family? Disability may not be something a person necessarily wants to think about, but it is more common than one may think. Approximately one in five people have a disability that could lead to them not being able to continue working or having to reduce their hours at some point during their career. The ultimate decision to discontinue employment efforts belongs to the individual. It’s important to do some planning and look into all available options to make an informed decision. Working with MS is possible, oftentimes utilizing accommodations to maintain productivity on the job. But once a person decides he or she may not be able to continue working, he or she will need to know about the disability benefits that are available.

MS CONNECTION: FALL 2015

Private Disability Private disability insurance, known as short-term (STD) and long-term disability (LTD), are benefits that employers may provide. A person would need to check with his or her employer to see if these options are available because not all employers provide this benefit. This benefit varies by insurance carrier and policy and carriers have their own regulations. It is important for the individual with MS to obtain a copy of the policy to determine the procedure for applying for benefits, how much the benefit will be, how long the benefits will last, what the definition of disability is, and if there are work incentives. Short-term disability insurance often provides partial income replacement for short periods of time, usually not more than 26 weeks. Once a person depletes STD and is no longer able to work, the individual may be able to apply for LTD. Many private LTD policies only provide monetary benefits for a few years while others may last longer. LTD usually pays a percentage of your last salary worked and usually does not provide continuation of health insurance. Oftentimes, the LTD carrier will require that an individual apply for (SSDI) within a certain time frame. SSDI is a federal disability retirement program that is funded by taxes from employees and employers. When a person is awarded SSDI benefits, the private disability insurance carrier may offset the individual’s payment by what the individual is receiving in SSDI. It is important for the individual to review his or her company’s policy and, if necessary, contact the human resources’ department to obtain more information.

NATIONALMSSOCIETY.ORG | 1-800-344-4867 Social Security Disability Insurance (SSDI) If a person is transitioning out of the workplace, another option could be SSDI. SSDI is a federal disability program and cash benefits are provided for individuals who can no longer work due to a medical condition. It is available to people who have worked and paid into the Social Security taxes and have a severe disability that is expected to last at least one year. In order to be eligible for SSDI you have to have an adequate work history and have earned a certain number of work credits. Generally, you need 40 credits, 20 of which were earned in the last 10 years ending with the year you became disabled. However, younger workers may qualify with fewer credits. A person can apply for SSDI technically the day after the individual stops working, although sometimes it’s better to wait for a short time period. However, if one knows that he or she is going to be applying for SSDI, he or she can start gathering information while still working. The application process is quite lengthy and requires a good bit of documentation. It may also require several appeals before a person ultimately gets approved for benefits. If a person does begin to gather information while working, it would be essential to hold off on actually applying until he or she has stopped working because a person cannot make more than $1090 per month to even be considered for SSDI. In order to apply for SSDI, an individual may do so online at www.socialsecurity. gov, by phone at 1 800-772-1213, or going into a local Social Security Administration field office. Leaving the workplace can cause stress around finances. Maintaining financial support for oneself or one’s family can be quite challenging. There are several things to consider - is there a spouse

21 who has an income that can support the financial needs, are friends and family able to help, can the person’s church or spiritual family help? Utilizing community resources may be helpful as well. This process can be difficult and confusing. Call an MS Navigator at 1 800-344-4867 to discuss disability options and health insurance. n Resources: The National MS Society has a toolkit to help understand private disability which can be found here: http://www.nationalmssociety.org/ NationalMSSociety/media/MSNationalFiles/ Brochures/Guidebook-Private-DisabilityInsurance-Claims-A-Guide-for-People-withMS.pdf For assistance with Social Security Disability Insurance please visit: Social Security Administration- www.socialsecurity.gov or 1-800772-1213 Information on the number of credits needed to be eligible www.socialsecurity.gov/retire2/ credits3.htm Disability Starter Kit- www.ssa.gov/disability/ disability_starter_kits.htm National MS Society Guidebook: http://www. nationalmssociety.org/Resources-Support/ Insurance-and-Financial-Information/SocialSecurity-Disability/Social-Security-DisabilityInsurance Tools to help with financial planning: http:// www.nationalmssociety.org/Resources-Support/ Insurance-and-Financial-Information/FinancialResources/Financial-Planning

22 MAKING CONNECTIONS

MEET ERIC SINAGRA Eric Sinagra, 26, is a Pittsburgh entrepreneur who is changing the way the world sees accessibility in the community. Eric and his co-founders started a company called pathVu, whose mission is to build a global map of sidewalks and features to improve accessibility and walkability. His passion in this field originates from his family life and growing up with two older brothers, one of whom has a disability. Nick, 30, has Spinal Muscular Atrophy and uses a power wheelchair for mobility. Growing up with an older brother who has a physical disability has shown Eric the challenges that people with disabilities face, especially when moving around the community. In 2011, Eric started graduate school in pursuit of his Master’s in Rehabilitation Science and Technology at the University of Pittsburgh. He conducted research as a graduate student at the Human Engineering Research Laboratories (HERL), a lab focused on improving the lives of people with disabilities. Eric’s research at HERL was to investigate the effects of rough sidewalks on wheelchair users. He worked on this project alongside Jon Duvall, a graduate student who also uses a wheelchair for mobility, and Jon Pearlman, advisor to Jon and Eric. Ian McIntyre and Tianyang (Tim) Chen later joined the project as interns. Jon, Jon, Ian, and Tim would all become co-founders of pathVu.

MS CONNECTION: FALL 2015 In 2014, Eric and his team saw the opportunity to start pathVu and improve sidewalk accessibility for all people. pathVu (www.pathvu.com) has developed the pathVu mobile app that allows pedestrians to understand the most accessible routes on the sidewalk, including the location of curb ramps, tripping hazards, narrow sidewalks, construction, and many more features. Now, we can work towards a community where all people of all abilities have safe access to all points of interest. The pathVu app is currently only available for Android users via the Google Play Store (iOS next), but all users can access a web version on the pathVu website.

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Eric and the pathVu team need your help to improve the app. The app depends on people like you to report these important sidewalk features. By downloading the pathVu app, and using it report sidewalk features, you are helping to improve the lives of people with disabilities. Just like Eric and Jon, we all have people in our lives who could benefit from improved accessibility, walkability, and safety in the community. Please help Eric and the pathVu team by downloading the pathVu app and using it to report sidewalk features as you move around the community. Who knows whose life you could change by making it a little more accessible?

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For more information about pathVu, go to www. pathvu.com, follow pathVu on Facebook, or follow them on Twitter: @pathVuInc. A map of real-time data and reported features can be viewed at http://map.pathvu.com/. You can also email Eric directly at eric.sinagra@pathvu.com. n

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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.

Patterned after Italyâ&#x20AC;&#x2122;s famed Mille Miglia open-road endurance race, Pennsylvania'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 Northern and Central PA. This year's event will offer a new schedule, new attractions and the new route, new finish at the Pocono Raceway, Pocono PA - so stay tuned! For information about sponsorship opportunities or to participate in the 2015 Mille for MS, email Scott at Scott.Garner@nmss.org or give him a call at 1 800-344-4867.

Great courses. Greatwww.MilleforMS.com cause. Great reason to take the day off.