Fulcrum Therapeutics announced it has launched ReDUX4, a Phase 2b clinical trial designed to assess the safety and efficacy of losmapimod, an investigational treatment for facioscapulohumeral muscular dystrophy (FSHD) in patients with a genetically confirmed diagnosis of FSHD. The Phase 2b ReDUX4 trial (NCT04003974) is recruiting…
Let me make it clear that I am not opposed to questions about my disease and why I use a wheelchair. In fact, I encourage them. I mean, we might as well talk about the elephant in the room, right? By this point in my life, I’m basically an…
Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people who’ve made it to adulthood. Neena Nizar doesn’t have to imagine. The 41-year-old English professor at Metro Community College in Elkhorn,…
Whether your child has been living with Duchenne muscular dystrophy for years or was just diagnosed, I’m here to remind you that it isn’t the end of the world. It’s just the beginning, and there’s more hope than ever. You have…
An adverse event report was erroneously submitted for a patient enrolled in Study-102 testing Sarepta Therapeutics’ micro-dystrophin gene therapy, an experimental treatment for Duchenne muscular dystrophy (DMD), the company announced. The board in charge of the study’s safety found no reason to stop the trial. According to…
Jiffy Lube has launched its 8th annual Muscle Up! campaign, which supports the Muscular Dystrophy Association’s (MDA) Summer Camp program as well as research and family services. Throughout August, Jiffy Lube patrons at participating service centers nationwide are encouraged to donate at least $3 to…
Some of my recent columns have been exhausting to write. This is because many of the experiences I have discussed have been difficult to actually live through. We live in a society that frustrates us. Living with muscular dystrophy is never easy, and creative living is necessary. Learning how…
The Children’s Hospital of Richmond (CHoR), Virginia, has been named Parent Project Muscular Dystrophy’s (PPMD) 26th Certified Duchenne Care Center (CDCC). PPMD’s program, established in 2014, recognizes facilities with outstanding neuromuscular programs providing comprehensive care with recognized standards to all living with Duchenne muscular dystrophy (DMD), a multi-systemic…
Being reliant on a wheelchair is not always easy, but there’s no reason to let wheels stop you from getting out and having a good time. Modern technology and increased accessibility have opened doors. Museums, movies, and walks through the park are just a sampling of activities available…
On a recent summer morning off the coast of Bat Yam, south of Tel Aviv, a dozen Israeli volunteers in wetsuits splashed in the sparkling blue waters of the Mediterranean Sea. But they weren’t there just for fun. The focus of their attention: three young boys gripping specially modified surfboards…
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