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.
MyFSHD
Claim This Podcastby Peter L Jones, PhD
4.8(19 reviews)
115 episodes
Updated Weekly
Accepts GuestsHas Sponsors
67
Podcast Authority
BetaGoodBased on show quality, social media presence, reviews, charts, and more
Quality74
Social0
YouTube76
Engagement77
Podcast Overview
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.
Language
🇺🇲
Publishing Since
2/25/2022
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67
Podcast Authority
BetaGoodBased on show quality, social media presence, reviews, charts, and more
Quality74
Social0
YouTube76
Engagement77
7
Excellent Areas
3
Good Performance
9
Growth Opportunities
excellent
Episode Length
1h 26m
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good
Publishing Consistency
Every 12 days
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Recent Episodes
July 4, 2026
Cleaning the lipstick off a pig
<p>"What is magic? Magic is deception, but deception designed to delight, to entertain, to inspire. It is about belief. Faith." Today we discuss the recent exciting data presented by Epicrispr and their EPI-321 gene therapy at the IRC , and more importantly, we discuss what they (shockingly) did not say, present, or disclose. Hmmmm..... While it is inconceivable (to us) that a company would not test if their specific treatment was actually working, it is equally unconscionable that a company (with the help of their foundation partners) would knowingly mislead the community, so we know that is not happening, but we do have some questions and look forward to clarification and real validation in the future.</p>
June 21, 2026
World FSHD Day 2026
<p>"It's not who I am underneath, but what I do that defines me." We celebrate World FSHD Day with those that are making a difference in the world (and our fathers -- Happy Father's Day!) and then discuss what we would like to hear from the FSHD clinical trial companies at the upcoming FSHD International Research Congress.</p>
May 17, 2026
Evaluating gene expression data in FSHD and presenting at ASGCT
<p>"I think the question we should be asking is, do you believe in this thing or not?" We discuss the value of MRI-informed muscle biopsies compared with uninformed biopsies, how we go about interpreting FSHD clinical trial gene expression data, and after the song, we show the Jones Lab CRISPRi presentation from the ASGCT annual meeting in Boston.</p>
115 total episodes available
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Frequently asked questions
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- What is MyFSHD?
- How often does this podcast release new episodes?
This podcast updates weekly.
- Where can I listen to this podcast?
This podcast is available on 8 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
No, this podcast does not typically feature guests.
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