This year marks the 35th anniversary of MDA’s Shamrocks fundraising partnership with retail stores across the country. To get in the Shamrocks spirit, we’d like to introduce you to some of the kids featured in this year’s campaign, which kicks off in February. Meet Gabrielle, age 14 When Gabrielle was diagnosed at the age of 1 with type 2 spinal muscular atrophy, her parents were told she wouldn’t see her third birthday. Now 14, Gabrielle is thriving and doesn’t allow anyone or anything to stop her from doing what she loves. She attended MDA Summer Camp for the first time in 2016, and her favorite memory was being able to go horseback riding.
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Living with Duchenne muscular dystrophy (DMD) since the age of 2, Thomas Roy has seen the disease progress throughout his life. While he had always wanted to attend Rutgers University in New Brunswick, N.J., he assumed he would never be able to do so because of his living situation. However, when Roy found out about the online degrees Rutgers offers — and that the university would accept transfer credits from the community college he attended — everything changed.
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“2016 was such a powerful year with so many wonderful memories. I met a lot of amazing individuals and families from all over who are so excited about the direction we are headed — just like me. I also met so many staff who have a great passion for this cause. From top to bottom, this organization never ceases to amaze me.” — Joe Akmakjian
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In my four years as President and CEO of this remarkable organization, I have never been more excited than I am about 2017. As I think about the year ahead, I’m reminded of how I felt at mile 10 of the Denver Half Marathon last fall. I ran as part of MDA Team Momentum and raised funds to support our mission. My legs and hips were aching, and I was moving at a slower pace than I wanted. But when I looked down at the honor ribbons pinned to my shirt, I knew I could fight through pain and fatigue to push forward.
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When Bryant Donnowitz first got involved with MDA, he didn’t have a direct connection to neuromuscular diseases. He was interested in helping MDA’s cause, but he didn’t know where to start, so he contacted his friend, April Tunnicliff, who is now MDA Team Momentum’s senior national endurance manager.
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You probably enjoy visiting MDA's Strongly blog to read personal stories from people living with neuromuscular diseases — but did you know you’ll also find updates and information straight from the mouths of the researchers who are working to uncover scientific and medical breakthroughs? Here are some excerpts from Strongly.
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Keilondi Johnson, a 39-year-old teacher from Virginia, who has spinal muscular atrophy (SMA), always wanted to work with children. When she got to college, she thought she wanted to go on to study the law and become a family lawyer. However, that changed when Johnson took on an internship at a campus day care center as part of her studies.
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Osaka-based Mitsubishi Tanabe Pharma’s new drug application for the drug edaravone (brand name Radicava) to treat people with ALS has been accepted by the U.S. Food and Drug Administration (FDA).An FDA decision on the drug is expected by June 16, 2017. Edaravone was approved last year in Japan and South Korea for the treatment of ALS and has been approved for the treatment of stroke since 2001.
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Author, producer and filmmaker Crystal Emery, who has Charcot-Marie-Tooth disease (CMT), wrote and directed her first play in the fifth grade, and she hasn’t stopped telling stories since then. She’s currently touring the country with her documentary film, “Black Women in Medicine,” which can be seen on PBS, and her foundation, URU, The Right To Be Inc. Quest spoke with Emery over the phone about the film, her passion for the arts and more.
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All parents need time to themselves, but for BJ Mirabile of Winchester, Mass., finding child care for her daughter Katie, who has spinal muscular atrophy (SMA), often proved difficult. “When she was younger, we had some neighborhood sitters and sitters through early intervention,” Mirabile says. But early intervention services are for babies and toddlers with developmental delays or disabilities. Now Katie is older, and she uses a power wheelchair, BiPAP (bilevel positive airflow pressure) machine and MIC-Key gastric feeding tube.
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In 2004, when Stevie Hopkins, a 33-year-old entrepreneur who has spinal muscular atrophy (SMA) and his sister, Annie, who also had SMA, put a wheelchair heart design on a pub crawl T-shirt, he never imagined it would eventually turn into a business that employs himself and more than 20 other employees, including a half-dozen employees with disabilities.
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