FSHD Straight Talk with Tim Hollenback

By: FSHD Straight Talk
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  • Summary

  • This talk show features people, advocacy, research, and more from the FSH muscular dystrophy community. Sponsored by the FSHD Society and made possible by our fabulous host and member of the FSHD community, Tim Hollenback.
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Hygiene & Healthy Living Science Social Sciences
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Episodes
  • 136: Notes of Gratitude with Gracie Caggiano and Ben Livingston

    136: Notes of Gratitude with Gracie Caggiano and Ben Livingston
    Nov 28 2024
    Today’s special episode spotlights two gifted musicians whose artistry inspires gratitude and reflection. Gracie Caggiano, a Kansas City-based singer-songwriter, shares her unique approach to crafting soulful, poetic music that blends intricate guitar work with heartfelt lyrics. Ben Livingston, a multi-talented Austin artist, talks about his eclectic sound, his love for collaboration, and how music has been a constant source of joy and connection.

    We’re grateful for all our listeners and hope you enjoy hearing performances from Gracie and Ben!

    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.

    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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    1 hr and 18 mins
  • 135: FSHD Cannot Stop an Adventurous Spirit with Don Burke, FSHD Straight Talk

    135: FSHD Cannot Stop an Adventurous Spirit with Don Burke, FSHD Straight Talk
    Nov 12 2024
    “There was a time when those of us with FSHD might not have known anyone with FSHD outside of our families.” Nearly 30 years after his diagnosis, Don Burke drove around the US and Canada for 93 days, including a stop at the 2024 FSHD Connect Conference in Denver. Join us for a heartwarming episode featuring Don as he shares stories and insights from his most recent trip and years of previous adventures. A “Midwest nice” risk taker, Don wants everyone with FSHD to enjoy life to the fullest. “We have to take risks. We have to plan more than most. I have to adapt so that I never say, ‘I regret not trying that.’”

    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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    1 hr and 4 mins
  • 134: Minutes Matter: Early Onset Advocacy with Ally, Debbie & Kristin

    134: Minutes Matter: Early Onset Advocacy with Ally, Debbie & Kristin
    Oct 22 2024
    In this illuminating roundtable, Tim talks with Ally Roets, Debbie Eggleston, and Kristin Zwickau, the passionate moms leading the Early Onset Chapter. In addition to discussing how differently FSHD progresses in kids versus adults, Ally, Debbie, and Kristin touch on their past and upcoming advocacy efforts, the importance of changing clinical trial designs, and parenting in rare disease spaces. When FSHD progresses relentlessly and quickly, minute matters. As Ally said at the end, these moms are tenacious, not going anywhere, and going to get treatments and a cure for their kids.
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    1 hr and 2 mins

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