FSHD Straight Talk with Tim Hollenback cover art

FSHD Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

By: 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.


Hygiene & Healthy Living Science Social Sciences
Episodes
  • 164: Keep Rolling: The Red Scooter Diaries Remastered
    Jan 27 2026

    This week we’re sharing a remastered version of an episode from 2022 featuring Claire Szabo-Casella, author of The Red Scooter Diaries and start of the short documentary film of the same name. During this phenomenal conversation, Claire and Lou discuss their efforts to create more accessible spaces in AZ to increase quality of life for folks with FSHD and additional disabilities. Claire and Lou discuss how they met, the vulnerability and trust required for an inter-abled relationship, and how to make sure you always keep growing and exploring.

    You can watch The Red Scooter Diaries here: https://www.youtube.com/@redscooterdiaries

    In 2024, Lou passed. He is greatly missed by Claire and their Arizona FSHD Community.

    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!

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    54 mins
  • 163: We Aren't Less Than, We're Doing It Different with Jessica Ryley Hammond
    Jan 13 2026

    Tim kicks off 2026 by interviewing Jessica Ryley Hammond, a counselor running for Harford County Council. A lifelong athlete and horse-rider, Jessica was inspired to run for County Council because her rural community expanded so quickly, the infrastructure couldn’t keep up. In addition to discussing how FSHD affected her ability to ride, Jessica touches on how FSHD impacts her ability to climb hilly neighborhoods and the useful ability to hold a stone-face. We look forward to tracking Jessica’s campaign with the primary in June 2026.

    Learn more about Jessica’s platform on her campaign Facebook page.

    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!

    Show More Show Less
    52 mins
  • 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!

    Show More Show Less
    51 mins
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