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
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 discuss the EPI-321 epigeneti…
Our scientific evaluation of and opinions on the EPI-321 publicly available pre-clinical 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 used to support the Epicrispr Bi…
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 inhibition for FSHD and FSHD e…
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 factors in successful gene thera…
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 introduces the knowledge gained from…
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.
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 to: www.curefshdforall.com) i…
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 our trip to Shanghai and Hanoi…
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 preliminary data from the biomar…
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 the FSHD curve and improve qua…
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, and she shares with us what …
FaceToned® Exercises for the Face with Carme Farré
"Come on. No, no, don't do that. Don't give me the pouty batface." We have video today (!) for our special guest Carme Farré, who founded FaceToned®, and she shares her experiences as part of an FSHD…
Brad, our angry Dad with your questions (pt 2)
"Never go in against a Sicilian when death is on the line!" We have both survived so far and are back with part 2 of your Reddit questions on FSHD.
Brad, our angry Dad is back with your questions (Pt 1)
"The battle of wits has begun. It ends when you decide and we both drink - and find out who is right, and who is dead." Today Brad, our angry dad, brings a list of your FSHD Reddit questions looking…
The science and the foundational funding leading to the current technologies in FSHD clinical trials.
"The most valuable commodity I know of is information." Today we discuss current clinical trials in FSHD and the foundational science behind the technology. While NIH has funded much of the foundatio…
Friends and funding.
"Good heavens, are you still trying to win? You've got an over developed sense of vengeance. It's going to get you into trouble someday." We remember Jenny Hasenjaeger and discuss research funding so…
For FSHD gene therapy you need to "Have-a-Little-Heart"
"You know the Greeks didn't write obituaries. They only asked one question after a man died: 'Did he have passion?'. " Today we are joined by our CRISPR Goddess to discuss her new FSHD optimized gene…
Fulcrum follow-up with our Angry Dad
"Show me the money!" Brad our Angry Dad sits down with us and asks the questions on his mind about the Fulcrum results and others going forward.
Our take on the REACH losmapimod clinical trial results
"I always tell the truth, even when I lie." Today we are joined by our CRISPR Goddess and cover the Fulcrum Therapeutics REACH phase 3 clinical trial data release and discuss our journey with Fulcrum…
A FORTITIDE follow-up with our (not so) Angry Dad.
"There's a time for daring and there's a time for caution, and a wise man understands which is called for." Brad our Angry Dad is back with some questions for us on the Avidity FORTITUDE AOC 1020 pha…