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MyFSHD
MyFSHD episodes
- 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, and how technology has advanced over the years to meet the challenges.
1 hr 18 min - 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
32 min - 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 an inhibitor of DUX4 expression, is highly unlikely to be an effective treatment for FSHD.
1 hr 9 min - What's going on in FSHD, week ending April 23, 2022.
Dr. Peter Jones catches you up on the week in FSHD.
30 min - 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, the Director of the Neuromuscular and Neurometabolic Clinic at McMaster University in Hamilton, Ontario, Canada, sits down with Priscilla Sharun and Peter Jones to talk about how diet, certain supplements, and individual targeted exercise can improve muscle health with FSHD and aging.
2 hr - What's going on in FSHD, week ending April 16th
Peter Jones recaps the week in FSHD; Solve FSHD, CRISPR, Morgan Hoffmann.
30 min - 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.
1 hr 33 min - 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.
29 min - 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 muscle decline.
1 hr 16 min - What's going on in FSHD, week ending April 2
Peter Jones answers recent patient questions and addresses issues relating to FSHD
33 min
About MyFSHD
From the publisher's feed
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.