MyFSHD artwork

Non-Profit · Peter L Jones, PhD

MyFSHD

by Peter L Jones, PhD

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.

Latest episodes

Showing 20 · updated from the feed

Cleaning the lipstick off a pig

"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 pre

Jul 4
2 h 21 min

World FSHD Day 2026

"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

Jun 21
1 h 49 min

Evaluating gene expression data in FSHD and presenting at ASGCT

"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

May 17
1 h 56 min

Reddit Q&A (part 2). No "A", a little "I". Peter and Brad finish up the line of Reddit questions.

"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

May 9
2 h 03 min

Some clinical trial news of the day (March 27, 2026 - **updated March 29th**)

"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. *

Mar 29
1 h 09 min

Reddit Q&A 3/17/2026 pt 1 (no song); Peter sits down with Brad our Angry Dad

"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 i

Mar 27
1 h 54 min

Our takes on recent (~Jan 2026) FSHD clinical trial updates

"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

Jan 15
46 min

More questions and comments with Brad, our Angry Dad

"That's super frustrating. It just makes me wanna pick up whoever is standing closest to me and throw them through this window and out into the infinite abyss of nothingn

Oct 25 2025
1 h 24 min

All-in-one version of our evaluation of EPI-321 data and trial

"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 pac

Sep 14 2025
1 h 35 min

Our evaluation and opinions of the EPI-321 clinical trial design and potential based on the pre-clinical data

"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

Sep 6 2025
45 min

Our scientific evaluation of and opinions on the EPI-321 publicly available preclinical data

"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 use

Sep 6 2025
2 h 04 min

Prequel for the Epicrispr Bio data and clinical trial discussion

"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 i

Sep 6 2025
1 h 23 min

The nuts and bolts of gene therapy for FSHD (Part 2 of 2)

"...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 fac

Aug 17 2025
1 h 33 min

The nuts and bolts of gene therapy for FSHD (Part 1 of 2)

"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 introdu

Aug 15 2025
1 h 19 min

Part 2 of our discussion with our teen FSHD advocates

"You were seeking some information of some kind?" Continuing our discussion with our young FSHD advocates, asking and answering some questions.

Jul 30 2025
41 min

Teens promoting their "Cure FSHD for All" initiative, podcast part 1

"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

Jul 28 2025
1 h 19 min

MyFSHD is worldwide on FSHD Day

"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 o

Jun 24 2025
1 h 19 min

Our take on Avidity's FORTITUDE phase 1/2 trial data

"I'll have what she's having." We'll take you through and discuss the recent release of Avidity Biosciences topline results from the phase 1/2 FORTITUDE trial and the pre

Jun 11 2025
54 min

Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 2)

"I gotta know what a 5 dollar shake tastes like." We continue our conversation with Tamara Gottlieb, who shares her years of experience helping to keep her family above t

Apr 25 2025
1 h 05 min

Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 1)

"You are what you eat, and I'm freaking delicious!" Our guest today, Tamara Gottlieb, is the driving force for our First Family of FSHD Fitness, Nutrition, and Lifestyle,

Apr 18 2025
50 min

Chart positions

Where MyFSHD ranks today in each Apple Podcasts chart (US, Sep 15, 2026).

#121 NEW Non-Profit US

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About MyFSHD on Reason.fm

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