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CREATIVE CONTROL an Artist with SMA Embraces Life MEET LYNN O’CONNOR VOS MDA’S New President and CEO

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CREATIVE CONTROL an Artist with SMA Embraces Life MEET LYNN O’CONNOR VOS MDA’S New President and CEO MDA.ORG/QUEST WINTER 2018 EMPOWERING FAMILIES WITH INFORMATION AND INSPIRATION CREATIVE CONTROL An artist with SMA embraces life MEET LYNN O’CONNOR VOS MDA’s new president and CEO Multidisciplinary care improves quality of life for individuals with a neuromuscular diseases lining ADVERTISEMENT Biogen discovers, develops, and delivers therapies for the treatment of neurodegenerative and rare diseases. WWW.BIOGEN.COM ©2017 Biogen. All rights reserved • 12/17 SMA-US-0310 • 225 Binney Street, Cambridge, MA 02142 A WORD FROM OUR CEO FORWARD MDA is leading the fight to free individuals — and the families who love them — from the harm A Word from President & CEO of muscular dystrophy, ALS and related life-threatening diseases Lynn O’Connor Vos that take away physical strength, independence and life. We use as president our collective strength to help ince joining MDA kids and adults live longer and and CEO in October, I’ve had the grow stronger by finding research sincere pleasure of spending time breakthroughs across diseases; S caring for individuals from day with and learning from our families, lead- one; and empowering families ing clinical experts, renowned researchers, with services and support in hometowns across America. dedicated sponsors, and passionate MDA staff and volunteers. The progress we’re Learn how you can fund cures, find care and champion making together is unprecedented, the cause at mda.org. and I know it is only the tip of the ice- berg. Working together, I see incredible For advertising opportunities: opportunities to push the limits of neu- Maureen Tuncer romuscular disease research and provide Advertising Sales Manager [email protected] an even better health care experience for For editorial queries: individuals and their families. Alyssa Quintero Many of you have probably been wondering what “ I see incredible Marketing Communications the future holds for MDA and how we will continue to [email protected] opportunities to advance research, innovation, family care and support in 2018 and beyond. By partnering with our community, push the limits of To update personal information we are mapping a strategic plan and specific focus areas neuromuscular and your Quest subscription to transform and save lives. You’ll hear more about this disease research in detail from me throughout the year. status, contact the MDA Resource and provide an Center at 800-572-1717. Additionally, I hope you will read the Q&A on page 33 in which I answer questions from Quest readers even better health about my experience, where I see the greatest oppor- Published quarterly by care experience Muscular Dystrophy Association tunities for MDA to help families and what you can 222 S. Riverside Plaza, Suite 1500 expect in the days and months to come. By combining for individuals and Chicago, Illinois 60606 | (800) 572-1717 email: [email protected] my passion for patient care and work as a clinical nurse their families.” Available on the internet at mda.org/quest ISSN 1087-1578 with deep experience leading health care companies in a Postage paid at Bolingbrook, IL — Lynn O’Connor Vos Nonprofit postal permit number 1446. new era of technology and innovation, I am committed to accelerating treatments, cures and care together for Postmaster: Treat as Standard A Mail Only every MDA family. © 2018, Muscular Dystrophy Association. All rights reserved. MDA and QUEST are registered trademarks I look forward to getting to know you and encour- of the Muscular Dystrophy Association. The acceptance of advertising in this magazine does age you to reach out to me and share your feedback and not constitute or imply endorsement by MDA of any product or service. MDA accepts no responsibility for ideas. Stay in touch with me on Twitter (@lynnvos), and any claims made in any advertisement. Quest reserves the right to refuse to accept any advertisement. For be sure to read MDA’s blog Strongly (strongly.mda.org), advertising information, call (727) 363-0078. where I’ll be posting as a regular contributor. At MDA, Information contained in Quest may not be reproduced, published, transmitted or distributed in whole or in part progress is our promise. I look forward to working with without prior written consent of MDA. Always consult your professional advisers as to how and for you to deliver on that promise to bring hope and medical, legal or financial information in Quest pertains answers for a brighter, healthier future. to you. MDA assumes no liability for any information in Quest. Sincerely, FOLLOW MDA ON PUBLICATION MANAGEMENT Lynn O’Connor Vos President and CEO GLCDELIVERS.COM Muscular Dystrophy Association Quest MDA.ORG/QUEST 1 25 winter 2018 CONTENTS pg 44 DEPARTMENTS FEATURES pg 42 Rene Runions 04 20 SHARING OUR TEAM APPROACH STRENGTH Multidisciplinary care MDA’s Strongly blog improves quality of showcases individuals life for individuals with who use their strength neuromuscular diseases. to help others. MORE ONLINE FOCUS ON: CATCH THE DO-IT- ADAPTIVE EQUIPMENT 06 YOURSELF SPIRIT PROGRESS NOW MDA families are used Read the latest news 41 ACCESS MDA to being problem- on medical research, An MDA Ambassador scientific advances and is inspired by her MDA solvers. In a Quest clinical trials. Summer Camp experience, online exclusive article, bowlers raise money for we explore how real 18 MDA and more. MDA families and those THRIVE 365 26 who support them are Learn how to start and CREATIVE CONTROL using innovative DIY facilitate a support group 50 Tech guru Jared Aronson FROM WHERE I SIT for your community. embraces life with adaptive equipment Seeing how others face imagination and laughter. solutions — both high- pg 13 adversity helps a writer find acceptance and hope. tech and low-tech — to improve everyday life 33 and gain independence. 52 MEET MDA’S NEW Read “A World of LASTING IMPRESSION PRESIDENT AND CEO Opportunities” at A high school play sets Lynn O’Connor Vos the stage for a career in answers readers’ mda.org/quest. the arts. questions. MDA-022 On the cover: The Labbadia family, pg 20 2 Quest WINTER 2018 INTRODUCING THE VMI HONDA PILOT Northstar E™ with Access360® Coming Soon! VMI is proud to introduce the Honda Pilot Northstar E. VMI’s Honda Pilot is the 1st mobility SUV with 360° of wheelchair maneuverability. BRING EVERYONE USE ANY WHEELCHAIR ACCOMMODATE ANY HEIGHT MANEUVER EASILY Contact us to receive news and updates about the upcoming launch! vmivans.com | 855-VMI-VANS SHARING OUR STRENGTH VOICES FROM MDA’S ONLINE COMMUNITY MDA’s mission is to free individuals — and the families who love them — from the harm of muscle-debilitating diseases. Giving Every day, people who don’t have neuromuscular disease — Strength to whether they are family, friends or acquaintances of someone Others who does — go to amazing lengths to support that mission. On MDA’s Strongly blog (strongly.mda.org), some of these agenerous individuals explain why they do what they do. Ron Minz, a lieutenant with the Baltimore At the age of 25, Richard County Fire Department, Leon became a Summer loves visiting MDA Camp counselor for the first Summer Camp on Fire time. Now, at the age of 30, Fighter Day. After a Leon is a city council member camper in a wheelchair in Cape Coral, Fla. He participates asked to ride in a in MDA Lock-Up, supports local Fill the Boot fire truck, Minz built a 28-foot-long drives and encourages other city leaders to accessible fire truck, which he takes to get involved with MDA. Baltimore and Washington, D.C., area “The lessons I have learned about compas- MDA Summer Camps every year. sion, patience and how precious life is have “The look on the kids’ faces is well allowed me not only to become a better person worth the time and effort and money but a better representative for the people.” spent. I do what I do because I like what I do, and it’s the right thing to do.” In October 2017, Katie Newlywed Erin Foster met her Williams ran the Chicago husband, Brandon, at MDA Summer Marathon with MDA Team Camp, where they Momentum. She was intro- both volunteered as duced to MDA by counselors for years. her college friend Joe That time is so Akmakjian, former MDA meaningful to them National Ambassador. that, in lieu of wedding “I’ve been wanting to do more for others and gifts, they asked for thought this might be an awesome way to do so.” donations to MDA. “There is so much joy seeing these kids at camp. It shows Get Involved us how we want to live our lives both Find your passion, and get involved in the MDA community in a now and in the future.” way that is meaningful for you. Learn how you can help families live longer and grow stronger at mda.org/get-involved. Quest 4 WINTER 2018 ADVERTISEMENT IS YOUR NEUROMUSCULAR DIAGNOSIS GENETICALLY CONFIRMED? progress now Tracking research updates and breakthroughs that help accelerate treatments and cures across MDA diseases MDA Research In Action MDA Research Dollars Power Progress New MDA grants will impact a range of neuromuscular diseases In November, MDA announced 13 new MDA • Announced Jan. 24: An MDA clinical research network grant research and development grants, totaling $918,000 over three years will spur advances in myo- with a total funding commitment of tonic dystrophy (DM) research. The investment, which provides $3.5 million, that are now supporting continued support for the Myotonic Dystrophy Clinical Research research projects around the world. Network, will support five medical centers that specialize in The new projects cover a broad DM research and clinical care. The network is led by Charles range of diseases in MDA’s program Thornton, professor of neurology at the University of Rochester, and are intended to impact the who serves as the network’s director.
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