Couverture de MyFSHD

MyFSHD

MyFSHD

De : 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 Economie Management Management et direction
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    Épisodes
    • MyFSHD is worldwide on FSHD Day

      MyFSHD is worldwide on FSHD Day
      Jun 24 2025

      "You're gonna need a bigger boat." MyFSHD is our summer blockbuster passion project. We discuss how to get it done, whatever your "it" is, in the FSHD space, as well as our trip to Shanghai and Hanoi to continue our efforts to help FSHDers around the world.
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      1 h et 19 min
    • Our take on Avidity's FORTITUDE phase 1/2 trial data

      Our take on Avidity's FORTITUDE phase 1/2 trial data
      Jun 11 2025

      "I'll have what she's having." We'll take you through and discuss the recent release of Avidity Biosciences topline results from the phase 1/2 FORTITUDE trial and the preliminary data from the biomarker cohort extension.
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      55 min
    • Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 2)

      Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 2)
      Apr 25 2025

      "I gotta know what a 5 dollar shake tastes like." We continue our conversation with Tamara Gottlieb, who shares her years of experience helping to keep her family above the FSHD curve and improve quality of life. It's a lot of work, but it can help. Part 2 of 2. Tamara is one of the leaders (along with Emily Ca and Wayne Nesbit) of the "FSHD - supplements, nutrition, and peer support" Facebook gropou, so check it out for more information.
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      1 h et 5 min

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