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MyFSHD

MyFSHD

Written by: Peter L Jones PhD
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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.Peter L Jones, PhD Economics Management Management & Leadership
Episodes
  • World FSHD Day 2026

    World FSHD Day 2026
    Jun 21 2026

    "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.
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    1 hr and 49 mins
  • Evaluating gene expression data in FSHD and presenting at ASGCT

    Evaluating gene expression data in FSHD and presenting at ASGCT
    May 17 2026

    "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.
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    1 hr and 57 mins
  • Reddit Q&A (part 2). No "A", a little "I". Peter and Brad finish up the line of Reddit questions.

    Reddit Q&A (part 2). No "A", a little "I". Peter and Brad finish up the line of Reddit questions.
    May 9 2026

    "I'm not bad. I'm just drawn that way." Today we finish up some questions on clinical trials, therapeutics, what may be in the future, and other random FSHD topics. Good times :)
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    2 hrs and 4 mins
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