MyFSHD
by Peter L Jones, PhD
Latest episode
Continuing our discussion with Ambassadors of the Cure FSHD for All…
Continuing our discussion with Ambassadors of the Cure FSHD for All…
About this podcast
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.
Episodes
The newest 20 of 117 episodes
- Continuing our discussion with Ambassadors of the Cure FSHD for All initiative · 1 h 7 min · Season 5 Episode 11"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…
- FSHD Biopharma --Please include us in your clinical trials (or at least allow expanded access!) · 1 h 10 min · Season 5 Episode 11"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…
- Understanding the Satellos drug going to clinic for FSHD · 1 h 3 min · Season 5 Episode 10"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…
- FSHD Phase I/II clinical trial previews for Scholar Rock, Soufflé and Dyne. · 1 h 21 min · Season 5 Episode 9"If you want something bad, you have to fight for it. Step up you game, Scott. Break out the L-word". Today we discuss a little more on the Epicrispr clinical trial and preview…
- Cleaning the lipstick off a pig · 2 h 21 min"What is magic? Magic is deception, but deception designed to delight, to entertain, to inspire. It is about belief. Faith." Today we discuss the recent exciting data presented…
- World FSHD Day 2026 · 1 h 49 min · Season 5 Episode 7"It's not who I am underneath, but what I do that defines me." We celebrate World FSHD Day with those that are making a difference in the world (and our fathers -- Happy Father's…
- Evaluating gene expression data in FSHD and presenting at ASGCT · 1 h 56 min · Season 4 Episode 6"I think the question we should be asking is, do you believe in this thing or not?" We discuss the value of MRI-informed muscle biopsies compared with uninformed biopsies, how we…
- Reddit Q&A (part 2). No "A", a little "I". Peter and Brad finish up the line of Reddit questions. · 2 h 3 min · Season 4 Episode 5"I'm not bad. I'm just drawn that way." Today we finish up some questions on clinical trials, therapeutics, what may be in the future, and other random FSHD topics. Good times :)
- Some clinical trial news of the day (March 27, 2026 - **updated March 29th**) · 1 h 9 min · Season 4 Episode 3"Blue Horseshoe loves Anacott Steel." Today we cover recent clinical trial news in the FSHD space and delve a bit deeper into some topics from part 1 of our Reddit Q&A. **Updated…
- Reddit Q&A 3/17/2026 pt 1 (no song); Peter sits down with Brad our Angry Dad · 1 h 54 min · Season 4 Episode 4"I am the eyes and ears of this institution, my friends." You asked, we (try to) answer your questions. Part 1 of 2. There is no song in this version due to copyright issues…
- Our takes on recent (~Jan 2026) FSHD clinical trial updates · 46 min · Season 5 Episode 1"So, Mr Tipton, how could it take you five minutes to cook your grits when it takes the entire grit-eating world twenty minutes?" We discuss the initial Epicrispr Biotech press…
- All-in-one version of our evaluation of EPI-321 data and trial · 1 h 35 min · Season 4 Episode 17"There's another old saying, Senator: Don't piss down my back and tell me it's raining." We know a lot of you don't have the time or interest in all the details so we packaged up…
- Our evaluation and opinions of the EPI-321 clinical trial design and potential based on the pre-clinical data · 46 min · Season 4 Episode 16"But did you bleed him? - Aesculapius says that bleeding is not a cure. It is only a way of proving that you are a physician at the expense of your patient." Finally, we discuss…
- Our scientific evaluation of and opinions on the EPI-321 publicly available preclinical data · 2 h 4 min · Season 4 Episode 15"Good morning, and in case I don't see ya, good afternoon, good evening, and good night!" We take our time to evaluate publicly available preclinical data for EPI-321 used to…
- Prequel for the Epicrispr Bio data and clinical trial discussion · 1 h 23 min · Season 4 Episode 14"In the history of science, innovative concepts occasionally arise from sudden left-field inspiration." Here we make sure everyone is up to speed on the types of CRISPR…
- The nuts and bolts of gene therapy for FSHD (Part 2 of 2) · 1 h 33 min · Season 4 Episode 13"...and by the time they figure out what went wrong, we'll be sitting on a beach, earning twenty percent." This is part 2 of our podcast series covering the important factors in…
- The nuts and bolts of gene therapy for FSHD (Part 1 of 2) · 1 h 19 min · Season 4 Episode 12"My friends are toys. I make them. It's a hobby. I'm a genetic designer." This is a two part podcast covering the important factors is successful gene therapy and introduces the…
- Part 2 of our discussion with our teen FSHD advocates · 42 min · Season 4 Episode 11"You were seeking some information of some kind?" Continuing our discussion with our young FSHD advocates, asking and answering some questions.
- Teens promoting their "Cure FSHD for All" initiative, podcast part 1 · 1 h 19 min · Season 4 Episode 10"And that would tell you what is obvious right now? That avoiding apple skins and pizza has no effect on this brutal disease?" Today we discuss the Cure FSHD for All (go to…
- MyFSHD is worldwide on FSHD Day · 1 h 19 min · Season 4 Episode 9"You're gonna need a bigger boat." MyFSHD is our summer blockbuster passion project. We discuss how to get it done, whatever your "it" is, in the FSHD space, as well as our trip…
