Episodios

  • 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 h y 6 m
  • Brad, our angry Dad with your questions (pt 2)
    Apr 3 2025

    "Never go in against a Sicilian when death is on the line!" We have both survived so far and are back with part 2 of your Reddit questions on FSHD.

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    1 h y 5 m
  • Brad, our angry Dad is back with your questions (Pt 1)
    Mar 25 2025

    "The battle of wits has begun. It ends when you decide and we both drink - and find out who is right, and who is dead." Today Brad, our angry dad, brings a list of your FSHD Reddit questions looking for answers.

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    1 h y 9 m
  • The science and the foundational funding leading to the current technologies in FSHD clinical trials.
    Mar 15 2025

    "The most valuable commodity I know of is information." Today we discuss current clinical trials in FSHD and the foundational science behind the technology. While NIH has funded much of the foundational science that todays therapeutic approaches are built upon, it is the private individual and foundation support from those with vested interests in a rare disease that drive industry investment that gets the therapies over the line and into the clinic and ultimately to patients.

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    1 h y 49 m
  • Friends and funding.
    Feb 23 2025

    "Good heavens, are you still trying to win? You've got an over developed sense of vengeance. It's going to get you into trouble someday." We remember Jenny Hasenjaeger and discuss research funding so that we don't let anyone else down.

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    1 h y 34 m
  • For FSHD gene therapy you need to "Have-a-Little-Heart"
    Oct 11 2024

    "You know the Greeks didn't write obituaries. They only asked one question after a man died: 'Did he have passion?'. " Today we are joined by our CRISPR Goddess to discuss her new FSHD optimized gene therapy cassette that is stronger, safer, more compact and all around better than anything out there for use in FSHD and neuromuscular gene therapy approaches.

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    32 m
  • Fulcrum follow-up with our Angry Dad
    Sep 28 2024

    "Show me the money!" Brad our Angry Dad sits down with us and asks the questions on his mind about the Fulcrum results and others going forward.

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    1 h y 37 m
  • Our take on the REACH losmapimod clinical trial results
    Sep 19 2024

    "I always tell the truth, even when I lie." Today we are joined by our CRISPR Goddess and cover the Fulcrum Therapeutics REACH phase 3 clinical trial data release and discuss our journey with Fulcrum from the beginning. While very disappointing from several aspects, in the end a lot of benefit truly has been gained for the FSHD field and we are grateful for Fulcrum's contributions to help others going forward. And there are many others coming along, this is the beginning and not the end for FSHD therapeutics.

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    1 h y 58 m