MyFSHD

About 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.

Publisher

Peter L Jones, PhD

Category

business

Language

en

Explicit

No

First episode

25 Feb 2022

Latest episode

18 Oct 2026

Latest episodes

119 episodes in the feed.

1. 

   18 Oct 2026

   Continuing our discussion with Ambassadors of the Cure FSHD for All initiative

   "Failure is not an option". Seth, Sarah and Eva provide their experiences and perspectives on growing up with early-onset FSHD and why (and how) they should be included in the therapeutic development and testing process.

2. 

   9 Oct 2026

   FSHD Biopharma --Please include us in your clinical trials (or at least allow expanded access!)

   "Houston, we have a problem". While it is exciting for the FSHD community that clinical trials are here and more are coming soon, the system is not working for everyone. Our young and non-ambulatory FSHDers of all ages are currently being left behind. Today, Maggie and Kate from the Cure FSHD for All initiative ask for inclusion into clinical trials; it is good business, good science, and the right thing to do. And if that is not feasible, then please consider expanded access to experimental therapeutics for those most in need and with no other options.

3. 

   1 Oct 2026

   Understanding the Satellos drug going to clinic for FSHD

   "You're gonna need a bigger boat!" Today we discuss the third compound going to clinic emerging from Neil Camarta's "Shark Tank" meetings. This one from Satellos was designed to address the regeneration deficit in DMD caused by reduced asymmetric muscle stem cell division, and is now being repurposed for FSHD to potentially boost muscle regeneration regardless of DUX4 status.

Reach and audience

Public platform figures. Ratings count people who left a rating, not total listeners.

YouTube views

15,516

Score snapshot 15 Sept 2025

Apple Podcasts (US)

5.0 / 5

4 ratings

Spotify

4.8 / 5

18 ratings

Podcast Authority Score: 67 / 100

A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.

Quality

74

Social presence

0

YouTube

76

Engagement

77

Contact MyFSHD

Guest appearances

Does not typically book guests

Based on episode analysis; this does not confirm that the show is currently accepting guests.

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