MyFSHD

Peter L Jones, PhD•myfshd.org

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.

Last refreshed: August 15th, 2025 at 10:07 PM ⓘ

Follow this podcast in the Metacast mobile app to refresh it and see new episodes.

Follow on

Apple Podcasts

Spotify

RSS

Podcasts are better in Metacast mobile app

Don't just listen to podcasts. Learn from them with transcripts, summaries, and chapters for every episode. Skim, search, and bookmark insights. Learn more

Episodes

What's going on in FSHD, week ending April 2

Peter Jones answers recent patient questions and addresses issues relating to FSHD

Apr 02, 2022•33 min•Season 1Ep. 9

The making of a FSHD mouse

Drs. Takako and Peter Jones discuss how they made the FLExDUX4 FSHD-like mouse model that is used around the world for FSHD therapeutic development and preclinical testing.

Mar 30, 2022•1 hr 52 min•Season 1Ep. 9

What's going on in FSHD March 26th 2022

Free flowing commentary on all things FSHD

Mar 26, 2022•32 min•Season 1Ep. 9

FSHD researcher Dr. Julie Dumonceaux talks FSHD with MyFSHD UK Ambassador Kate Fowles

Dr. Julie Dumonceaux, Professor at University College London Great Ormond Street Institute of Child Health in London, England, discusses her lab's FSHD work and overall FSHD efforts in the UK with MyFSHD UK Ambassador Kate Fowles.

Mar 24, 2022•42 min•Season 1Ep. 8

FSHD therapeutics overview

Dr. Charis Himeda joins us again to talk all types of FSHD therapeutic approaches

Mar 17, 2022•1 hr 44 min•Season 1Ep. 7

Epigenetics and FSHD

A primer on epigenetic gene and genome regulation and how it relates to FSHD

Mar 12, 2022•27 min•Season 1Ep. 6

The DUX4 story with Dr. Alexandra Belayew

Dr. Alexandra Belayew from the University of Mons in Belgium and the discoverer of DUX4 sits down with volunteer MyFSHD Ambassador Jenny Hasenjaeger to discuss the discovery of DUX4, the Fulcrum Losmapimod trial, antisense, and a little bit of everything FSHD.

Mar 10, 2022•1 hr 29 min•Season 1Ep. 5

FSHD1, FSHD2, & FSHD1+2 basics

A short primer on the genetic differences and similarities between FSHD1, FSHD2, and FSHD1+2 just to make sure we are all up to speed.

Mar 06, 2022•21 min•Season 1Ep. 4

CRISPR technology for FSHD with Dr. Charis Himeda

Dr. Peter Jones sits down with Dr. Charis Himeda to discuss her invention of CRISPR-inhibition for FSHD, some of the bumps along the way, and its ultimate therapeutic potential and constraints. In addition, other CRISPR technology that is being developed for FSHD is discussed.

Mar 02, 2022•1 hr 32 min

FSHD diagnostics explained

Dr Peter Jones explains genetic diagnostics for FSHD1 and FSHD2. This covers various methods for FSHD deletion testing through the new epigenetic research testing, and the difference between CLIA-approved testing and research testing. The final 20 minutes takes you through your FSHD genetic report if you participated in the epigenetic research testing at the Jones Lab at UNR.

Feb 27, 2022•1 hr 23 min

MyFSHD Rare Disease Day with Dr. Ryan Wuebbles, FSHD patient and neuromuscular disease researcher.

Dr. Peter Jones sits down with Dr. Ryan Wuebbles to discuss his journey with FSHD first as a patient and now as a researcher. Covers some FSHD basics, research approaches, and how you can be the best advocate for FSHD.

Feb 25, 2022•1 hr•Season 1Ep. 1

← Prev

Hosted on Spotify for Creators (Anchor)

For the best experience, listen in Metacast app for iOS or Android