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
Saturday catch up with questions and comments around FSHD, May 21, 2022
"Never planned anything in my life." Drs. Peter Jones and Charis Himeda talk more small molecule and discusses news of the week as it relates to FSHD
Small molecule drug discovery for FSHD
"Hey wanna s'more?"... "S'more what?"... "No, do you wanna s'more?"... "I haven't had anything yet, so how can I have s'more of nothing?".... "You're KILLIN' ME SMALLS!" Drs. Peter Jones and Charis …
Saturday catch up with questions and comments around FSHD, May 14, 2022
Today we answer listener questions about FSHD research testing and AAV gene therapy.
Making sense of antisense oligonucleotide technology for FSHD
"They've done studies you know -- 60% of the time it works all the time."... "That doesn't make any sense." We discuss the different types of antisense oligonucleotide (AON/ASO) technologies and how…
What's going on in FSHD, week ending May 7, 2022
"What we have here is failure to communicate..." We discuss more on gene therapy viral vectors and answer a listener question about melatonin supplementation for FSHD
Gene therapy prospects for FSHD
"So much time so little to do. Wait a minute. Strike that. Reverse it." Drs. Charis Himeda and Peter Jones go back over gene therapy technology for FSHD, including some of the remaining hurdles, …
What's going on in FSHD, week ending April 30, 2022
Dr. Jones answers some of your questions from the week and reviews recent advances in science that relate to FSHD
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.
Drs. Peter and Takako Jones discuss the ACE-083 trial and the basis of myostatin inhibition for FSHD, and go through the data showing that berberine, despite proof-of-concept studies showing it to be…
What's going on in FSHD, week ending April 23, 2022.
Dr. Peter Jones catches you up on the week in FSHD.
Some nutrition and exercise options for improving FSHD muscle health
"Sonny, true love IS the greatest thing in the world -- except for a nice MLT - mutton, lettuce and tomato sandwich, where the mutton is nice and lean and the tomato is ripe." Dr. Mark Tarnopolsky, …
What's going on in FSHD, week ending April 16th
Peter Jones recaps the week in FSHD; Solve FSHD, CRISPR, Morgan Hoffmann.
Questions and comments from "Dad" about the future of FSHD
Peter Jones sits down with a true stakeholder in all of this and talks curing FSHD. Brad Hasenjaeger is a concerned father and husband who wants action.
What's going on in FSHD week ending April 9th, 2022
Dr. Peter Jones gives a brief recap of the week and answers some questions from patients.
Chip Wilson discusses his new venture, Solve FSHD, and his vision for restoring muscle health in FSHD and aging.
Chip Wilson, founder of Lululemon and an FSHD patient, sits down with Drs. Peter Jones and Charis Himeda to discuss his new $100 million venture, Solve FSHD, aimed at curing FSHD and age-related musc…
What's going on in FSHD, week ending April 2
Peter Jones answers recent patient questions and addresses issues relating to FSHD
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.
What's going on in FSHD March 26th 2022
Free flowing commentary on all things FSHD
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 My…
FSHD therapeutics overview
Dr. Charis Himeda joins us again to talk all types of FSHD therapeutic approaches
Epigenetics and FSHD
A primer on epigenetic gene and genome regulation and how it relates to FSHD