In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .
School creeps up on you! At first you look at your three-and-a-half months on the calendar and marvel at the expansive possibilities, but here I am three months later and I’ve done maybe three quarters of what I wanted to get done. It’s not to say that I’ve been lounging around, although there has been . . .
At the 2019 MDA Clinical & Scientific Conference, one scientific session of interest centered on what’s new in neuromuscular diseases (NMDs). In this session, presenting scientists discussed progress in therapy development and clinical trials for a range of NMDs, including Becker muscular dystrophy (BMD), congenital muscular dystrophy (CMD), congenital myasthenic syndromes (CMS), myotonic dystrophy (DM), . . .
Spring 2018 has been an exceptionally busy time for National Ambassador Justin Moy. After being named 2018 MDA National Ambassador in March, Justin traveled to Japan with members of his school (with his MDA Camp Counselor serving as his care attendant). He also had several artistic endeavors this spring, exhibiting his artwork at a local . . .
A phase 1 trial to test omigapil in congenital muscular dystrophy (CMD) conducted at the National Institutes of Health is complete and data indicate it met its primary objective. Results from the trial, also known as CALLISTO, show a favorable pharmacokinetic profile of omigapil and demonstrated that the drug was safe and well-tolerated in children and . . .
Justin Moy’s future is brimming with potential. The 17-year-old Concord, Mass., native is currently a senior at Concord-Carlisle High School, where he enjoys science and participating in the school choir. Although he hasn’t yet figured out what college he’s going to attend, he knows what he wants to do once he gets there. “I want . . .
“My husband and I always tell people this because it is the truth: Henry is our hero,” says Stephanie Betts, an Team Momentum runner and proud mother of son Henry who lives with congenital muscular dystrophy. “He is incredibly strong. Our quote on the back of our Henry’s Heroes shirts states, ‘True strength is in the soul and spirit, not in muscles.’ He is an amazing kid who has the best attitude that just draws people in. We are so incredibly lucky to be his parents.”
Over the past 35 years, the MDA Shamrocks program has raised more than $300 million to help save and improve the lives of families living with muscular dystrophy. Get to know Natalie, who graces the 2017 green MDA Shamrock with her sister Avery.