Since the tender ago of five, Hugo Trevino, who has Spinal Muscular Atrophy (SMA), has been involved with MDA. From participating in MDA Summer Camp as a child to rallying behind causes like Fill the Boot and Muscle Walk, Hugo has always been dedicated to helping others live longer and grow stronger. Now, as a . . .
Over the last six decades, MDA has committed $1 billion to research designed to move the world closer to treatments and cures for muscular dystrophy, ALS and related life-threatening diseases. As a result, MDA’s fingerprints are on nearly every major neuromuscular disease research breakthrough, and the progress we continue to see in the field is . . .
I was warned. Yes, upon accepting the invitation to speak at the National Association of Letter Carriers convention in Los Angeles, I was told to prepare myself. Everyone said that NALC members are some of the MDA’s most enthusiastic supporters. And they were right. But I already knew what I was in for. The NALC . . .
They say “What happens in Vegas stays in Vegas.” But my experience at the 53rd International Association of Fire Fighters convention was too good not to share with you. This wasn’t my first trip to Las Vegas, but it was the first time I found myself in Sin City on business. This trip made me . . .
Navigating through college isn’t easy for anyone, but it can be especially tricky for people with disabilities. Here are some quick tips to help those of you heading off to college this fall — as well as anyone considering attending university one day. 1. Pick a school you want to attend, not one you are . . .
I have been in education for thirty-six years, first as a student and now a teacher entering her seventeenth year in the classroom. Over the years, there have been hundreds of lessons that I’ve either learned or taught about living with spinal muscular atrophy and using a wheelchair. But there are four in particular that stick . . .
Every August is Spinal Muscular Atrophy Awareness Month, and this year we have a lot to celebrate. At the beginning of August, Biogen and IONIS Pharmaceuticals announced encouraging results from a late-stage clinical trial testing an experimental drug for infants with SMA type 1. The drug is called nusinersen and is designed to increase production . . .
Natalia Rodríguez Muela, a postdoctoral fellow at Harvard University in Cambridge, Mass., was awarded an MDA development grant totaling $179,985 over a period of three years to deepen our understanding of what goes wrong in spinal muscular atrophy (SMA), a progressive disease caused by low levels of SMN protein. The work will focus on how . . .
In a joint statement today, Biogen and Ionis Pharmaceuticals announced encouraging interim results from the late-stage ENDEAR clinical trial to test the experimental drug nusinersen in infants with type 1 spinal muscular atrophy (SMA). Based on the results, investigators have stopped the trial to allow all participants to transition into an open-label trial called SHINE, . . .
Jimmy Valdes had a lot of things going for him: a good job, family and friends who loved and cared for him, and an optimistic outlook on life. But he had his challenges, too. Diagnosed with spinal muscular atrophy when he was 4 years old, Jimmy says he thought that one milestone in many people’s . . .
