MyFSHD
MyFSHD is about education and personal empowerment for the worldwide facioscapulohumeral muscular dystrophy (FSHD) community. Here we have discussions and commentary hosted by FSHD researcher Peter Jones, PhD, on many things of interest to the FSHD community. Learn about the science behind the different FSHD therapeutic approaches, FSHD pathology, family genetics and FSHD diagnostics. We will discuss upcoming clinical trials and what to look forward to. You will get to understand how you can be better prepared, become involved, and help contribute to defeating FSHD once and for all.
- Update frequency
- every 6 days
- Average duration
- 79 minutes
- Episodes
- 105
- Years Active
- 2022 - 2025
The DUX4 story with Dr. Alexandra Belayew
Dr. Alexandra Belayew from the University of Mons in Belgium and the discoverer of DUX4 sits down with volunteer MyFSHD Ambassador Jenny Hasenjaeger to discuss the discovery of DUX4, the Fulcrum Losm…
FSHD1, FSHD2, & FSHD1+2 basics
A short primer on the genetic differences and similarities between FSHD1, FSHD2, and FSHD1+2 just to make sure we are all up to speed.
CRISPR technology for FSHD with Dr. Charis Himeda
Dr. Peter Jones sits down with Dr. Charis Himeda to discuss her invention of CRISPR-inhibition for FSHD, some of the bumps along the way, and its ultimate therapeutic potential and constraints. In a…
FSHD diagnostics explained
Dr Peter Jones explains genetic diagnostics for FSHD1 and FSHD2. This covers various methods for FSHD deletion testing through the new epigenetic research testing, and the difference between CLIA-ap…
MyFSHD Rare Disease Day with Dr. Ryan Wuebbles, FSHD patient and neuromuscular disease researcher.
Dr. Peter Jones sits down with Dr. Ryan Wuebbles to discuss his journey with FSHD first as a patient and now as a researcher. Covers some FSHD basics, research approaches, and how you can be the bes…