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 | Pennsylvania 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- Pittsburgh, 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 Receive our email newsletter: Samuel Zacharias nationalMSsociety.org/signup 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.