Which one is right for me? by Amy Bekier, San Diego chapter director No one chooses to use a wheelchair, and many who are still mobile opt for a scooter hoping it’s not the end of their walking life—and to avoid the perceived stigma of using a chair. Once you have crossed the threshold to… Read More »
Folding Lightweight Travel Power Wheelchairs
New biotech is developing Genea Biocells’ FSHD drug
By Alex Kiselyov, CEO, Myocea, Inc. Myocea is a biotechnology startup with a focus on neuromuscular disorders. Our product pipeline is championed by the small molecule GBC0905 (Rebastinib) aimed at the treatment of FSHD Type 1 and Type 2. Myocea was spun out of San Diego-based Genea Biocells in 2019 after its parent company Genea… Read More »
More than a pretty pair of shoes
by Barbara Zehetbauer-Hoehl, Vienna, Austria Three years ago, I developed a symptom called foot drop caused by my FSHD Type 2. The biggest loss, which came with losing my muscles that support my feet, were the pretty shoes that I just wasn’t able to wear anymore. I love dressing up and I love shoes, so… Read More »
COVID-19 Vaccine Q&A
This Q&A is based on the December 9 webinar with Rabi Tawil, MD, and Ghinwa Dumyati, MD, from the University of Rochester Medical Center, and the January 15 webinar hosted by the National Organization of Rare Diseases with Stephen Hahn, MD, FDA commissioner; Peter Marks, MD PhD, director of the FDA’s Center on Biologics Evaluation… Read More »
MRI in FSH muscular dystrophy research
This month’s FSHD University webinar (video above) provided an outstanding, nontechnical explanation of magnetic resonance technology (MRI) and how it is being applied in the Fulcrum Therapeutics clinical trial of an FSHD therapeutic drug. Rosemary Shull of AMRA Medical expounded on why MRI is the “gold standard” method for imaging soft tissues such as… Read More »