MyFSHD

Update on FSHD diagnostics and therapeutic approaches at the Sydney FSHD Community Day

"Well, ain't we a pair, raggedy man." Today we go through our Sydney FSHD Community Day presentation (with a little extra) for FSHD Global Research Foundation, updating t

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 i

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.

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 desi

FSHD Phase I/II clinical trial previews for Scholar Rock, Soufflé and Dyne.

"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 p

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

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

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

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

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. *

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

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

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

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

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

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

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

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

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

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.