An expression of the live unlimited spirit, stories and voices of the MDA community
Researchers are looking for boys and men living with Duchenne muscular dystrophy, ages 12 years and older, to participate in a phase 2 clinical trial, sponsored by FibroGen, to test the experimental drug FG-3019 (pamrevlumab). The study, known as “MissionDMD,” is designed to help researchers evaluate whether FG-3019 is safe and effective in people with . . .
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 . . .
Starting a new school year is hard on every parent and child, but it’s particularly difficult when you have a child with special needs. As a parent you want to make sure that those needs are met all day every day, even if you are not with them. Even after you explain what your . . .
Voting is a privilege of living in a democratic society, and, for people with disabilities, it is one of the most important ways to promote leaders that best represent your values. But the voice of the disability community is only as loud and as strong as the number of disability advocates that are registered to . . .
September is National Preparedness Month. Emergencies can happen in an instant and without warning. From weather-related events and other natural disasters to emergencies such as chemical spills and power outages, the unexpected can put you and your family in danger — unless you plan ahead. Please join us for an important discussion about how families living . . .
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 . . .
Steven Markus, assistant professor at Colorado State University in Fort Collins, Colo., was awarded an MDA research grant totaling $300,000 over a period of three years to study alterations in the dynein gene and their effects in spinal muscular atrophy (SMA) and amyotrophic lateral sclerosis (ALS). His work to elucidate the molecular basis for dynein . . .
When I was a junior in high school, my father was diagnosed with ALS. At the time, I didn’t know what it was or what it meant, and Icould hardly imagine that I would make a career working for an organization whose mission is to find treatments and cures for ALS and other related muscle-debilitating diseases. . . .
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 . . .
Pat Loewi’s daughter, Sammy, felt invisible at school. Powering through the halls at her big, urban high school, she was ignored. The kids didn’t look at her. They didn’t smile at her or make eye contact, even when Sammy had her adorable service dog, Annie, by her side. “Kids just looked right past her,” Pat . . .
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