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 . . .
On Wednesday, Runway of Dreams once again announced it is collaborating with the iconic fashion brand Tommy Hilfiger to launch an adaptive version of the fall children’s clothing line. Following the success of the Tommy Hilfiger Spring collection (which nearly sold out within the first week), the fall collection features a baseball jacket with concealed MagnaReady® magnets to maintain . . .
“November 1, 2011 was the day that everything changed for our family. We were sitting in a room with no windows and seemingly no air to breathe and the news came like a bulldozer: Duchenne muscular dystrophy, a muscle wasting disease with no cure that is 100% fatal. I couldn’t believe it. All I wanted to do . . .
Investigators are seeking people to participate in a phase 2 clinical trial, sponsored by Idera Pharmaceuticals, to evaluate the effect of the experimental drug IMO-8400 on skin lesions and muscle weakness in dermatomyositis. While the cause of dermatomyositis is unclear in most cases, it is known that ongoing inflammation triggered by the disease, over time, . . .
