Robin Stemple

2 months ago | musculardystrophynews.com | Robin Stemple |Marisa Wexler |Betty Vertin

I’ve played music since I was 5 years old. My first professional playing job was as an accordionist in a Polish polka band when I was 13. My accordion at the time was a full-size Excelsior 120 bass model that weighed about 35 pounds. My professional playing career took a lot of turns over the next 18 years. I enjoyed playing in a rock group, a polka band, a disco group, a country band, and, eventually, a prototypical “wedding” band that did a little bit of everything.

2 months ago | musculardystrophynews.com | Marisa Wexler |Patricia Inacio |Margarida Maia |Robin Stemple

The U.S. Food and Drug Administration (FDA) has given Entrada Therapeutics permission to launch a Phase 1b clinical trial to test ENTR-601-44, the company’s experimental exon-skipping therapy, in adults with Duchenne muscular dystrophy (DMD) who carry a mutation that’s amenable to exon 44 skipping. Entrada had sought the FDA’s OK to start the trial in 2022, but the agency put the application on hold later that year.

Feb 12, 2025 | musculardystrophynews.com | Robin Stemple |Marisa Wexler

One thing I was born with, aside from my facioscapulohumeral muscular dystrophy (FSHD), was narrow feet. As part of a working-class family, where money always seemed to be in short supply, my feet became an added expense that my mom combated by being a thrifty shopper. If she saw shoes on sale that I’d eventually grow into, she’d buy them and stash them in the closet for future use. As an adult, I carried on this thrifty shopper heritage.

Jan 15, 2025 | musculardystrophynews.com | Robin Stemple |Marisa Wexler |Betty Vertin

Many times over the years since the 1989 car crash that nearly killed me, I’ve been asked if I had any near-death or out-of-body experiences while I hung between life and death. I always try to clarify what people mean by these terms. If we’re talking about my spirit hovering in the corner of a room while doctors and nurses worked to save my life, or entering a tunnel guided by a brilliant light, I haven’t.

Dec 10, 2024 | musculardystrophynews.com | Marisa Wexler |Robin Stemple |Mary Chapman |Betty Vertin

The venture philanthropy organization SOLVE FSHD is offering $10 million in prizes for innovators who are working to develop new treatments for facioscapulohumeral muscular dystrophy (FSHD). “This competition will bring together the brightest minds in medicine, technology, and science, all working toward a cure for this devastating disease,” Eva Chin, executive director of SOLVE FSHD, said in a press release from the organization.