MyFSHD
By Peter L Jones, PhD
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Episodes: 109
Description
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.
| Episode | Date |
|---|---|
|
Some clinical trial news of the day (March 27, 2026 - **updated March 29th**)
|
Mar 29, 2026 |
|
Reddit Q&A 3/17/2026 pt 1 (no song); Peter sits down with Brad our Angry Dad
|
Mar 27, 2026 |
|
Our takes on recent (~Jan 2026) FSHD clinical trial updates
|
Jan 15, 2026 |
|
All-in-one version of our evaluation of EPI-321 data and trial
|
Sep 14, 2025 |
|
Our evaluation and opinions of the EPI-321 clinical trial design and potential based on the pre-clinical data
|
Sep 06, 2025 |
|
Our scientific evaluation of and opinions on the EPI-321 publicly available preclinical data
|
Sep 06, 2025 |
|
Prequel for the Epicrispr Bio data and clinical trial discussion
|
Sep 06, 2025 |
|
The nuts and bolts of gene therapy for FSHD (Part 2 of 2)
|
Aug 17, 2025 |
|
The nuts and bolts of gene therapy for FSHD (Part 1 of 2)
|
Aug 15, 2025 |
|
Part 2 of our discussion with our teen FSHD advocates
|
Jul 30, 2025 |
|
Teens promoting their "Cure FSHD for All" initiative, podcast part 1
|
Jul 28, 2025 |
|
MyFSHD is worldwide on FSHD Day
|
Jun 24, 2025 |
|
Our take on Avidity's FORTITUDE phase 1/2 trial data
|
Jun 11, 2025 |
|
Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 2)
|
Apr 25, 2025 |
|
Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 1)
|
Apr 18, 2025 |
|
FaceToned® Exercises for the Face with Carme Farré
|
Apr 12, 2025 |
|
Brad, our angry Dad with your questions (pt 2)
|
Apr 03, 2025 |
|
Brad, our angry Dad is back with your questions (Pt 1)
|
Mar 25, 2025 |
|
The science and the foundational funding leading to the current technologies in FSHD clinical trials.
|
Mar 15, 2025 |
|
Friends and funding.
|
Feb 23, 2025 |
|
For FSHD gene therapy you need to "Have-a-Little-Heart"
|
Oct 11, 2024 |
|
Fulcrum follow-up with our Angry Dad
|
Sep 28, 2024 |
|
Our take on the REACH losmapimod clinical trial results
|
Sep 19, 2024 |
|
A FORTITIDE follow-up with our (not so) Angry Dad.
|
Jun 22, 2024 |
|
A(+) is still for Avidity: give me the good stuff!
|
Jun 14, 2024 |
|
Pigs and p38
|
Jun 01, 2024 |
|
The three little (FSHD) piggies.
|
Jan 28, 2024 |
|
CRISPR in the clinic
|
Dec 24, 2023 |
|
Allow me to reintroduce Jaegerthekidd
|
Nov 04, 2023 |
|
Assessing the case, so far, for apabetalone as a new drug candidate being investigated for FSHD.
|
Nov 01, 2023 |
|
Catching up on clinical trials
|
Sep 24, 2023 |
|
Live from Australia
|
Sep 13, 2023 |
|
A gene therapy approval for Duchenne muscular dystrophy and understanding Therapeutic Misconception.
|
Jul 28, 2023 |
|
More questions, more answers, and some explaining to do.
|
Jun 20, 2023 |
|
Your questions, our answers.
|
Jun 10, 2023 |
|
Live from the Biologic Scaffolds for Regenerative Medicine Symposium in Napa California
|
May 27, 2023 |
|
We are back with updates on our worldwide efforts for FSHD diagnostics.
|
May 17, 2023 |
|
Roundup of the FSHD news of the day with our CRISPR Goddess.
|
Apr 12, 2023 |
|
The return of Brad (the angry dad).
|
Mar 26, 2023 |
|
Rare Disease Day and Accountability
|
Mar 10, 2023 |
|
Reintroducing the MyFSHD podcast
|
Feb 25, 2023 |
|
"A" is for Avidity
|
Feb 13, 2023 |
|
We have a lot in common with pigs. "Don't flatter yourselves", reply the pigs :).
|
Feb 06, 2023 |
|
Our "State of the Field" address.
|
Jan 27, 2023 |
|
Happy 2023 from MyFSHD!
|
Jan 15, 2023 |
|
Merry Christmas, Happy Hanukkah, and Happy Holidays from MyFSHD
|
Dec 25, 2022 |
|
Antisense, gene therapy, and stem cell news, and the Blues Brothers
|
Dec 15, 2022 |
|
The best humanized FSHD muscle xenograft mouse model with Dr. Bob Bloch.
|
Dec 02, 2022 |
|
We have a lot to be thankful for!
|
Nov 24, 2022 |
|
More on FSHD research testing, CRISPR, and minipigs
|
Nov 20, 2022 |
|
Catch up on some news of the week then sit down with FSHD researcher Maryam Farooqi
|
Nov 10, 2022 |
|
News of the week on Fulcrum and CRISPR gene therapy.
|
Nov 06, 2022 |
|
Happy Nevada Day! Today we talk about early onset FSHD and getting adolescents into clinical trials.
|
Oct 31, 2022 |
|
Monopoly money in science and to test, or not to test, (your kids) for FSHD
|
Oct 21, 2022 |
|
Keeping up with even more investment and more technology coming into the FSHD space.
|
Oct 13, 2022 |
|
More clinical trial discussion with our FSHD Mom and Dad.
|
Oct 05, 2022 |
|
Update on clinical trials for FSHD
|
Oct 01, 2022 |
|
Catching up on FSHD, Saturday Sept 24th, 2022
|
Sep 24, 2022 |
|
Live from Sydney, Australia, it's MyFSHD!
|
Sep 17, 2022 |
|
Brunch with Maryam (and Takako and Peter). Our 50th episode!
|
Sep 11, 2022 |
|
FSHD catch-up, September 7, 2022
|
Sep 08, 2022 |
|
More CRISPR questions from the audience.
|
Sep 01, 2022 |
|
Kari Cilliers, a medical student from South Africa found her way to Nevada to learn about FSHD
|
Aug 27, 2022 |
|
Our FSHD Dad is back with more questions, comments and concerns on biomarkers, clinical trials, MRI, and supplements
|
Aug 19, 2022 |
|
Fixing FSHD down under (and everywhere) with FSHD Global Research Foundation
|
Aug 13, 2022 |
|
More on nutrition, supplements, and lifestyle/exercise.
|
Aug 11, 2022 |
|
Saturday catchup and a little bit more on FSHD-like minipigs, Aug 6, 2022
|
Aug 06, 2022 |
|
Bringing home the bacon with Jenny, Ben, Peter, and FSHD-like minipigs.
|
Aug 03, 2022 |
|
Weekend catchup, July 31, 2022; hanging out in the high Sierra Nevada for summer Sunday brunch with Brad and Peter discussing all things FSHD.
|
Jul 31, 2022 |
|
We ain't dead yet, so we can get better. Welcome to the 40th podcast episode!
|
Jul 27, 2022 |
|
Saturday FSHD catch-up, July 16th 2022
|
Jul 26, 2022 |
|
MyFSHD welcomes Chris Carrino
|
Jul 20, 2022 |
|
FSHD in the UK with Kate and Dr. Channa Hewamadduma
|
Jul 13, 2022 |
|
A little bit deeper into DNA methylation.
|
Jul 09, 2022 |
|
Back in Reno, Dr. Peter Jones fields some questions from all of you.
|
Jul 01, 2022 |
|
Saturday catchup with questions and comments around FSHD, June 25, 2022
|
Jun 25, 2022 |
|
World FSHD Day 2022 with Ms Nguyen Cam Thi and Dr. Jones
|
Jun 20, 2022 |
|
A student in FSHD research
|
Jun 15, 2022 |
|
Saturday catch up with questions and comments around FSHD, June 11, 2022
|
Jun 11, 2022 |
|
FSHD Biomarkers and IL-6 targeted therapy
|
Jun 09, 2022 |
|
Saturday catch up with questions and comments around FSHD, June 4th, 2022
|
Jun 04, 2022 |
|
Fire Inspector Brad, our FSHD Dad, brings more questions on the drug development pathway for FSHD
|
Jun 01, 2022 |
|
Saturday catch up with questions and comments around FSHD, May 28, 2022
|
May 29, 2022 |
|
Briefly on diagnostics and stem cells for FSHD
|
May 25, 2022 |
|
Saturday catch up with questions and comments around FSHD, May 21, 2022
|
May 21, 2022 |
|
Small molecule drug discovery for FSHD
|
May 18, 2022 |
|
Saturday catch up with questions and comments around FSHD, May 14, 2022
|
May 14, 2022 |
|
Making sense of antisense oligonucleotide technology for FSHD
|
May 11, 2022 |
|
What's going on in FSHD, week ending May 7, 2022
|
May 07, 2022 |
|
Gene therapy prospects for FSHD
|
May 04, 2022 |
|
What's going on in FSHD, week ending April 30, 2022
|
Apr 30, 2022 |
|
We investigate and help you understand the science behind myostatin inhibition (ACE-083 trial) and berberine supplementation for FSHD; effective in the lab, not so much in you.
|
Apr 27, 2022 |
|
What's going on in FSHD, week ending April 23, 2022.
|
Apr 23, 2022 |
|
Some nutrition and exercise options for improving FSHD muscle health
|
Apr 20, 2022 |
|
What's going on in FSHD, week ending April 16th
|
Apr 16, 2022 |
|
Questions and comments from "Dad" about the future of FSHD
|
Apr 13, 2022 |
|
What's going on in FSHD week ending April 9th, 2022
|
Apr 09, 2022 |
|
Chip Wilson discusses his new venture, Solve FSHD, and his vision for restoring muscle health in FSHD and aging.
|
Apr 06, 2022 |
|
What's going on in FSHD, week ending April 2
|
Apr 02, 2022 |
|
The making of a FSHD mouse
|
Mar 30, 2022 |
|
What's going on in FSHD March 26th 2022
|
Mar 26, 2022 |
|
FSHD researcher Dr. Julie Dumonceaux talks FSHD with MyFSHD UK Ambassador Kate Fowles
|
Mar 24, 2022 |
|
FSHD therapeutics overview
|
Mar 17, 2022 |
|
Epigenetics and FSHD
|
Mar 12, 2022 |
|
The DUX4 story with Dr. Alexandra Belayew
|
Mar 10, 2022 |
|
FSHD1, FSHD2, & FSHD1+2 basics
|
Mar 06, 2022 |
|
CRISPR technology for FSHD with Dr. Charis Himeda
|
Mar 02, 2022 |
|
FSHD diagnostics explained
|
Feb 27, 2022 |
|
MyFSHD Rare Disease Day with Dr. Ryan Wuebbles, FSHD patient and neuromuscular disease researcher.
|
Feb 25, 2022 |