SUMMER 2017

MS CONNECTION NEWSLETTER

JUST THE TWO OF US, PAGE 5 INSIDE 1 3 7 8 THIS GET CONNECTED TREATMENTS MS NAVIGATOR® SUPPORT & ISSUE CALENDAR PROGRESS CONNECTIONS GET CONNECTED CALENDAR

THANK YOU TO OUR BIKE MS® Golf MS—MSPAKeystone.org PREMIER NATIONAL SPONSORS: • MS Erie Golf Outing – Mon, Aug 14 Lake Shore Country Club • Bike MS: Escape to the Lake Anne E. Barnes Memorial Tournament – Thurs, Sep 7 Presented locally by FedEx Ground. Iron Maters Country Club Jun 10-11, Moraine State Park • Register at bikeMS.org Annual MS Golf Tournament, Colleen McGuire Memorial – Jumpstart Wed, Sep 20, Laurel Valley Golf Club Sat, Jun 17, Sewickley MSPAKeystone.org Everyday Matters Sep TBD. Erie County. MSPAKeystone.org 2017 MS Seminars Jul 10, Sep 11 & Nov 6, Moosic area Bike MS: Cook Forest River Ride Register at MSPAKeystone.org or Presented locally by Seneca Resources 1-800-344-4867 Sat, Sep 16, Cook Forest State Park, Cooksburg. Bike MS: Keystone Country Ride Register at bikeMS.org Jul 22-23, Hollidaysburg Senior High School. Register at bikeMS.org Lobsterfest for MS Fri, Sep 22. Enjoy your choice of a whole George F. Hempt Memorial steamed Maine Lobster or a 10 oz. MS Polo Match Filet Mignon plus a generous portion of steamed shrimp. Learn more and Sat, Aug 12 at Hempts Farm Polo Field, purchase tickets at MSPAKeystone.org Mechanicsburg. Gates open at noon with a children’s tent, activities and Doggy Dash followed by the Polo Match at 2 p.m. SUPERCARS/Mille for MS Register at MSPAKeystone.org or Sep 23-24. Supercars On State Street 1-800-344-4867 Mille for MS. Learn more and register at has officially joined forces with the Music for MS MSPAKeystone.org Sat, Aug 12 at Harwood Acres. For more information or to purchase tickets, visit musicforMS.org

MS Connection. Frequency: Irregularly. National Multiple Sclerosis Society, 900 S Broadway, 1 | MS CONNECTION Summer 2017 | Keystone Second Floor, Denver, CO 80209. Issue No. 2. A Breakthrough Board of Trustees with Your Name On It Chair Vice Chair Douglas Miner Sandy Bettor In March the Food and Drug Administration approved a Secretary Garrett F. Gallia new multiple sclerosis therapy, Pamela A. Grant W. Hummer McCallum modifying treatment for Brian D. Kauffman primary progressivemarking MS and the an importantfirst-ever disease- new Michael Arnold option for people with relapsing forms of the Kristina A. Pae disease (more on page 3). Gina Baird William Shrader Ellie Bernstein Past Chair for ALL people with MS. This achievement gives It’s a significant milestone toward finding solutions Robert S. Bernstein me renewed optimism that the next generation of Chuck Knight treatments—particularly for progressive MS—is David Betts just around the bend and that a world free of MS is Kim Lemon not far behind. Scott Conley Jeffrey A. Martin This is a breakthrough with your name on it. It was Roberta Sciulli- Carleen McGann made possible by your activism, your volunteering, Carlson your giving, fundraising and more. We made this Jordan Moskal happen through our collective and deliberate Arthur J. DiDonato, work—Together We Are Stronger. Jr. George Neelan

Thank you for all you do to help change the Michael R. Floyd Michael R. Pavone world for people with MS! Here’s to many more breakthroughs ahead. Andy Gabler Susan Fuhrer Kardos Max J. Hempt Candace Sarris Anne Mageras Rock Heyman, MD President, Pennsylvania Keystone Thomas Scott, MD Jerry Hogenmiller Patricia A. Sheehan 1501 Reedsdale Street, Suite 105 Joan Campasano- , PA 15233 Hoover Gary Thomas, MD 1-800-344-4867 | MSPAKeystone.org Ryan Huet Nancy Weiland MSconnection.org MSsociety Geoffrey Kelly Thomas D. Wright nationalMSsociety MSsociety nationalMSsociety Lynn Knepp Lou Weiss

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Pennsylvania Keystone | nationalMSsociety.org | 2 FINDING SOLUTIONS FOR PROGRESSIVE MS MIKE, DIAGNOSED IN 1983

Ocrelizumab (Ocrevus™, Genentech, a member ofThis the isRoche the first Group) FDA-approved was medicationapproved by forthe primaryFood and progressive Drug Administration MS. (FDA) in MarchnationalMSsociety.org/ for use in ocrevusprimary progressive and relapsing forms of MS. Read more at . You—as part of the MS movement—helped the Society fund early work Measuringthat led to the treatment development effect of this B-cell therapy. Thank you! few or no recovery or remission periods The effect of treatment is more difficult when major symptoms improve. So to measure in progressive versus progression is more difficult to measure relapsing MS. Clinical trials involving and usually happens over long periods people with relapsing MS often rely on of time. This difference makes it hard counting relapses or doing MRI scans to to quickly detect whether a therapy detect immune activity. In progressive is impacting progression and thus MS, there are few or no relapses, and has made therapy development for YOU CAN HELP ADVANCE progressive MS a challenge. MS RESEARCH: • Join an event and fundraise, or give Ocrevus is the first success after nationalMSsociety.org/donate many disappointments. Now there is • Advocate for government progress from other clinical trials. For support of medical research example, positive results were recently nationalMSsociety.org/MSactivist announced from a trial of BAF-312 • Participate in research studies (Siponimod) in secondary progressive nationalMSsociety.org/ MS, and there is new interest in researchparticipation wellness research to identify exercise, dietary and other approaches that will help people with MS live their best lives.

3 | MS CONNECTION Summer 2017 What’s next in progressive MS research? Over the past few decades, several medications that have FDA approval for diagnoses other than MS have been Researchers are exploring what drives prescribed by doctors for the treatment injury to the brain and spinal cord each of these medications there is of MS—also called “off-label” use. For in progressive MS—to identify new potential therapeutic targets that may some, but often limited, clinical trial stop the damage along the injured nationalMSsociety.org/offlabel evidence of efficacy. Get the details at pathways.• Other focus areas include: More must be done to stop . • Identifying factors that contribute to disease progression progression risk

• Finding a way to measure and predict the transition to progression We need to continue our investment in research to find solutions for Developing better animal models to progressive MS. We welcome the inform the study of the mechanisms • success of Ocrevus, and we remain underlying MS and progression focused on finding n more and better Testing approaches for preventing solutions for treating all forms of and treating MS progression, progressiveThe International MS. Progressive MS including repurposed FDA-approved Alliance is a growing global initiative to therapies and strategies to repair end progressive MS. The Alliance brings • nerve-insulating myelin and shield together the world’s leading experts in the nervous system from damage MS to identify the critical knowledge Exploring the potential of different and treatment gaps where progress types of stem cells and stem must be made to change the world for cell therapies such as HSCT for people with progressive MS. Read more at progressiveMSalliance.org. nationalMSsociety.org/celltherapyturning off immune attacks or stimulating repair; learn more at

WHAT IS A BREAKTHROUGH? It’s being able to button your shirt in the morning. It’s walking to the supermarket, and all the way back home. It’s getting back up on that bike, that surfboard, that horse. Feeling strong enough to fall in love. Continuing the job you were made for. It’s knowing that you and your loved ones will never worry about MS again—ever.

LEARN MORE AT BREAKTHROUGHMS.ORG JUST THE TWO OF US BIKE MS® BRINGS A COUPLE CLOSER TOGETHER

Joe and Josie, diagnosed in 2009, at Bike MS After Joe Benassi had what he calls “the time of his life” riding in Bike MS, his wife, Josie, wanted to join him. for us. I’d come home from work, and “I didn’t know what to say. I wasn’t sure Josie would be in her spandex ready she would be able to do that,” Joe says. to ride. It has changed her outlook Josie has faced mobility challenges since on having MS. She’s gained better being diagnosed with multiple sclerosis acceptance of the disease because she in 2009. Wanting to support his wife, has a way of coping with it now.” Joe set out to find a solution. Together, Joe and Josie—who have been “I found a used tandem bike on married for 19 years and have three Craigslist,” he says. “It was life-changing children—have cycled more than 3,000 miles and raised $33,000 (and counting) for the National MS Society. “It’s brought us closer. We talk the Bike MS is an experience grounded whole time. It’s our time to connect,” in camaraderie and marked by Josie says. passion, inspiration, determination To conquer the summer heat, Joe, an and pure enjoyment. electrical manufacturing engineer, put People with MS who cycle in a Bike his engineering knowledge to use and MS event can join the ‘I Ride with MS’ designed a cooling vest for Josie that program and enjoy day-of-event circulates ice water through a tank on benefits and a complimentary jersey the back of the bike. With the help of a from Primal Wear, the official apparel 3-D printer, he also created a custom provider of Bike MS. cane-holder attachment for their bike so Josie can use her cane at rest stops. 5 | MS CONNECTION Summer 2017 In November 2016, Josie experienced an MS flare-up that caused her to be hospitalized and threatened her ability to continue cycling. To keep her going, Joe found a tandem bike that could be custom built with individual pedaling that would allow Josie to rest if needed. Problem is, it also came with a $6,000 price tag. That’s when a good friend stepped in to help. Left: Josie’s custom cooling vest “He called me and said, ‘It’s done. I’m Right: the cane holder “Oncebuying I’m the on bike. the I signed up to ride [in Bike MS], and I bike, I just go. I want Josie riding absolutely love next to me,’” Joe remembers. it,” Josie says. “It This year, the has reinvigorated couple’s 14-year- me. It has given old son, Andrew, will also be me a sense of riding alongside accomplishment.” them. And the new tandem bike was completed in April—just in time for Joe and Josie to begin training for Bike MS. “I’m ready to go,” Josie says. MuckFest® MS is the FUN mud & obstacle The couple says participating in Bike 5K. No special training required! We’re also on a mission to end multiple sclerosis: MS is one of the best decisions they 100% of your fundraising dollars benefit the National MS Society. Have a blast and make a difference! have ever made. REGISTER AT MUCKFESTMS.COM “The bike allowed her to be proud,” says © 2017 Event 360, Inc. Joe. “Now she wears her ‘I Ride With MS’n jersey and she’s like, ‘Yeah, I have MS— and I’m going to be the best I can be.’”

nationalMSsociety.org | 6 NAVIGATING THE CHALLENGES OF MS

MS Navigators connect people to the information, resources and support needed to move their lives forward. MS Navigators are highly skilled professionals who are supportive partners and help navigate the challenges of MS unique to each person’s situation.

MS• Navigators are trained to connect and provide: Information and education to help people with MS and their support ELLECIA • teams powerfully advocate for what DIAGNOSED IN 2011 they need, when and how they need it Emotional support resources for • people with MS as well as family and carepartners, including support Assessment for personalized groups and ways to connect with case management through the • Edward M. Dowd Personal others living with MS • n Advocate Program Help to navigate the complexities of finding a healthcare provider, Crisis intervention in times of need Call 1-800-344-4867 or visit • benefits, insurance and access to coverage, and employment nationalMSsociety.org/navigator to connect to the information, • Resources to face financial challenges resources and support you need to and plan for the future move your life forward—with the help Wellness strategies that can make of the MS Navigator® Program. an impact on quality of life with MS including diet, exercise, emotional well-being and connection to local Thewellness National Multiple resources Sclerosis Society is proud to be a source of information on topics related to MS. The information provided is based on professional advice, published experience and expert opinion, but does not constitute medical or legal advice.

7 | MS CONNECTION Summer 2017 ONLINE & IN-PERSON RESOURCES

Find your next opportunity to learn new skills—and polish up old ones— to live your best life with MS.

LIVE FULLY, LIVE WELL EVERYDAY MATTERS: A Collaboration with Can Do MS® LIVING YOUR BEST LIFE WITH MS

Lifestyle behaviors and choices Increase your knowledge of positive can impact both MS and quality psychology and develop a personalized of life. You can build hope, self- plan for implementing these principles confidence and motivation to pursue and achieving greater life satisfaction. your wellness goals—and develop nationalMSsociety.org/ Find a program near you, or start your personal approach to living everydaymatters nationalMSsociety.org/ now at well with MS. Find a program near livefullylivewell or 1-800-344-4867. you at WEBINAR & RESILIENCE: ADDRESSING or 1-800-344-4867. THE TELELEARNING SERIES CHALLENGES OF MS A Collaboration with Can Do MS

Held monthly on the second Tuesday, Even if resilience—a mindset of growth • and opportunities, of seeing obstacles 8–9:15 p.m. ET: • as challenges rather than threats—isn’t June 13: Accessibility your natural tendency, you can learn • thrive July 11: Resilience / Coping Skills strategies and practice them. • August 8: Advancing MS Move past coping and learn to . nationalMSsociety.org/resilience or September 12: Navigating Healthcare Find a program near you at nationalMSsociety.org/telelearning Register to join (online or by phone) at call 1-800-344-4867. or 1-800-344-4867.

nationalMSsociety.org | 8 THANK YOU TO OUR WALK MS® WALK THIS WAY NATIONAL SPONSORS: A simple—but incredibly powerful—way to end MS With your help, Walk MS got community members moving and left them moved! Thank you to everyone (nearly 15,000!) who came to one of the 24 Walk MS events throughout 56 Pennsylvania THANK YOU TO OUR WALK MS LOCAL counties and volunteered, donated PRESENTING AND PREMIER SPONSORS: or helped raise nearly $1.6 million to fuel research life-changing breakthroughs for people with MS.

At the age of 37, Teletracking colleague, Kathy, was diagnosed with MS. She says, “While MS can be a daily struggle, I am very blessed to still work, and I desire to keep living life to the fullest. I support the MS Society because we need to find a cure.” TeleTracking has donated to the MS Society for more than 10 years in support of Kathy, encouraging colleagues to not only donate to the team, but to participate.

At the age of 37, TeleTracking colleague, Kathy, was diagnosed with MS. She says, “While MS can be a daily struggle, I am very blessed, and I desire to keep living life to the fullest. I support the MS Society because we need to find a cure.” TeleTracking has donated to the MS Society for more than 10 years in support of Kathy, encouraging colleagues to not only donate to the team, but to participate.

Each year, the associates at GIANT Food Stores and MARTIN’S Food Markets lace up their sneakers to support Walk MS in their communities. In 2017, GIANT / MARTIN’S had over 2,000 associates from Pennsylvania, Maryland, Virginia and West Virginia involved. In their 20 years of involvement, GIANT / MARTIN’S have raised more than $5 million for the MS movement!

9 | MS CONNECTION Summer 2017 | Pennsylvania Keystone SUPPORT, CONNECTION & SELF-HELP GROUPS The Cumberland County group Members of Allegheny meets the fourth Tuesday of each County *Couples month, 6 p.m. at HealthSouth Group* attend in pairs Rehabilitation Hospital. They start to support their their meetings with chair exercises partners. Third to music and utilize MS Society Wednesday, programs like Resilience: Addressing 6 p.m. at the the Challenges of MS. To join, contact National MS leader Audrey at 717-486-3596. Society in the Cardello Building (North Point Dr.). The group is new Tioga County To join, contact leader Lizzie at and growing in the Mansfield area. 412-407-2476 or They meet the second Tuesdays, 6:30 [email protected]. p.m. at Canoe Camp Church. Contact leader Lena to join: 570-463-2380 or [email protected].

For a complete list of groups including meeting dates, times and leader contact information, visit nationalMSsociety.org/PAXSHG or call 1-800-344-4867.

LOCAL WALK MS SPONSORS, THANK YOU! Texas Roadhouse, Biogen, EMD Serono, Peace Love and Little Donuts – Beaver, Acorda, Mallinckrodt, Mylan, TEVA, Care Café Kolache, Northwest Savings Bank, Unlimited, Toshiba, Healthsouth, KDKA & Logistics+, LECOM, Ainsworth Pet Nutrition, the CW, Allegheny Health Network, Rita’s South Erie Turners, Jet 24, Fox66, Utz, Little Italian Ice, UPMC & Chartwell, , Caesars, Jimmy Johns, Cool 101, S&T Bank, Sarris Candies, Sam’s Club, Eat N Park, Connemaugh Health System, Fiarmans Nugo Nutrition, 5 Generations Bakers, Contracting Inc., Marianna’s Fundraisers, Snyder of Berlin, Betsy Ann Chocolates, Treasure Lake, Imlers, Bestway Pizza, Lamar Outdoor Advertising, Gitano Subway, Pizza Hut, Roaring Spring, WTAJ, Productions, KDKA Radio, Cascade Park, Froggy 98, 96Key, Sunny 106, WGAL, The Phoenix Rehab and Health Services, The Citizens’ Voice, Fun 101.3-ESPN and more!! Plastek Group, Siemens PLM Software,

Pennsylvania Keystone | nationalMSsociety.org | 10 MS CONNECTION NEWSLETTER

900 South Broadway Second Floor Denver, CO 80209

Pennsylvania Keystone

ONE DESTINATION: A WORLD FREE OF MS. Escape to the Lake, June 10-11 Presented locally by FedEx Ground

Keystone Country Ride, July 22-23

Cook Forest River Ride, September 16 Presented locally by Seneca Resources

Mason Dixon Challenge October 14-15

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THANK YOU TO OUR PREMIER NATIONAL SPONSORS