Meet Steven Blier, Sarah Geissler, and Chris Stenmon, three remarkable individuals with FSH muscular dystrophy who spoke about their dreams and personal challenges at the 2016 CureFSHD Gala. Interviewed by WBUR Morning Edition host Bob Oakes.
The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. Q…. Read More »
International workshop in November reaches consensus on a global FSHD patient registry. If you are an individual with FSHD, or a family member, you may have been asked to join a patient registry. Perhaps you are wondering what a registry is? Disease registries are an essential tool for advancing research to understand a disease, improve patient… Read More »
The Kennedy Krieger Institute is recruiting volunteers with FSHD for a clinical research study. Volunteers will be asked to undergo muscle strength testing and non-invasive magnetic resonance imaging (MRI) and spectroscopy (MRS) of the muscles. The strength testing and MRI/MRS scans will be repeated every 3-6 months for up to 2 years. We are particularly… Read More »