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FSHD Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

De: FSHD Straight Talk
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No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.


Ciencia Ciencias Sociales Higiene y Vida Saludable
Episodios
  • 162: AMA: Answering Your Questions About FSHD

    162: AMA: Answering Your Questions About FSHD
    Dec 30 2025
    In our first ever Ask Me Anything (AMA) episode, Tim hosts a panel of FSHD experts to answer questions submitted by you! Amanda Hill, Dr. Lucienne Ronco, and Dr. Michelle Mellion answer questions about how to effectively describe pain to your care providers, how AI is advancing or assisting FSHD research and drug development, and more. Everyone experiences FSHD differently, and we learn the most, when we come together.

    No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.

    On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.

    If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.

    Email: FSHDRadio@FSHDSociety.Org

    You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!

    Más Menos
    51 m
  • 161: Pilates for FSHD, Rehab & Muscle Health: an Interview with Carme Farré, CEO/Founder of FaceToned

    161: Pilates for FSHD, Rehab & Muscle Health: an Interview with Carme Farré, CEO/Founder of FaceToned
    Dec 9 2025
    Join Tim for a fascinating episode with Carme Farré, CEO/Founder of FaceToned. From a young age, Carme found herself fascinated with yoga, pilates, and holitics health and wellness practice. She comes from a family where multiple members live with FSHD and was surprised that her career provided tools to help her family, and, eventually herself. Recently diagnosed, Carme is a passionate advocate for providing natural structure and support for muscle groups affected by FSHD, with the added side effect of laughter and improved self-image. This episode is a phenomenal conversation about how intentionally moving your tiny muscles can absolutely make a difference.

    What workouts or fitness practices have helped you manage your FSHD? Tim would love to hear from you!


    FaceToned was founded in 2014 with a mission of supporting women through wellness practices, increased confidence, and graceful aging. FaceToned combines elements of yoga, pilates, and physical therapy to help strengthen, rehab, and support muscles in the face and neck.

    • Website: https://facetoned.com/
    • FaceToned Instagram: https://www.instagram.com/Face.Toned
    • FaceToned YouTube: https://www.youtube.com/channel/UCoMx6vZAfZ2n8opQDIp7tlg
    • Carme’s Instagram: https://www.instagram.com/carmefarre_com/

    No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.

    On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.

    If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.

    Email: FSHDRadio@FSHDSociety.Org

    You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!


    Más Menos
    59 m
  • 160: Adapting the Best We Can with Quinn Wilton

    160: Adapting the Best We Can with Quinn Wilton
    Nov 25 2025
    In this week’s episode, Tim speaks with Quinn Wilton, a social worker and DIY fundraiser, about her life, career trajectory, and growing community. While Quinn does give away some of the secrets to a stellar event, the importance of family, sibling, and community support is at the core of this issue. Tune in to hear Quinn’s incredible story from life in Canada’s urban and rural areas.

    No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.

    On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.

    If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.

    Email: FSHDRadio@FSHDSociety.Org

    You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!

    Más Menos
    1 h y 3 m
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