MyFSHD

By: Peter L Jones PhD
  • Summary

  • 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
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Episodes
  • 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 hr and 5 mins
  • Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 1)
    Apr 18 2025

    "You are what you eat, and I'm freaking delicious!" Our guest today, Tamara Gottlieb, is the driving force for our First Family of FSHD Fitness, Nutrition, and Lifestyle, and she shares with us what she has learned over her years of experience helping keep her family above the FSHD curve and improve quality of life. It's a lot of work, but it can help. Part 1 of 2. Tamara (along with Emily Ca and Wayne Nesbit) is one of the leaders of the "FSHD - supplements, nutrition, and peer support" Facebook group, so check it out for more information.

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    51 mins
  • FaceToned® Exercises for the Face with Carme Farré
    Apr 12 2025

    "Come on. No, no, don't do that. Don't give me the pouty batface." We have video today (!) for our special guest Carme Farré, who founded FaceToned®, and she shares her experiences as part of an FSHD family and how her techniques for facial fitness can help the FSHD community.

    If interested, you can arrange a free consultation below:

    🔗 https://calendly.com/carmefarre/15min?month=2025-04

    and find more information:

    🌐 www.facetoned.com
    📚 courses.facetoned.com

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    1 hr and 6 mins

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