エピソード

  • Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 2)
    2025/04/25

    "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.

    続きを読む 一部表示
    1 時間 5 分
  • Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 1)
    2025/04/18

    "You are what you eat, and I'm freaking delicious!" Our guest to day is our First Lady (AND President) of FSHD Fitness, Nutrition, and Lifestyle, Tamara Gottlieb, who shares 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 is one of the leaders of the "FSHD - supplements, nutrition, and peer support" Facebook group, so check it out for more information.

    続きを読む 一部表示
    51 分
  • FaceToned® Exercises for the Face with Carme Farré
    2025/04/12

    "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

    続きを読む 一部表示
    1 時間 6 分
  • Brad, our angry Dad with your questions (pt 2)
    2025/04/03

    "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.

    続きを読む 一部表示
    1 時間 5 分
  • Brad, our angry Dad is back with your questions (Pt 1)
    2025/03/25

    "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.

    続きを読む 一部表示
    1 時間 9 分
  • The science and the foundational funding leading to the current technologies in FSHD clinical trials.
    2025/03/15

    "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.

    続きを読む 一部表示
    1 時間 49 分
  • Friends and funding.
    2025/02/23

    "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.

    続きを読む 一部表示
    1 時間 34 分
  • For FSHD gene therapy you need to "Have-a-Little-Heart"
    2024/10/11

    "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.

    続きを読む 一部表示
    32 分