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
  • 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
  • 133: Life Re-Written: Jumping in After Diagnosis with Michael King

    133: Life Re-Written: Jumping in After Diagnosis with Michael King
    Oct 8 2024
    Join host Tim Hollenback for a phenomenal conversation with Michael King, the new Chapter Director for North Carolina. A go-getter by nature, Michael went from advocating for his health and a diagnosis to experiencing life after diagnosis to his fullest potential. In addition to attending Connect 2024, Michael spearheaded the North Carolina Walk & Roll and helped his F3 friends raise funds through their annual extinction run. Michael is a testament to the importance, power, and collective strength built through community. Tune in to hear his full story plus Tim’s thoughts on the recent Fulcrum trial news.

    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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    49 mins
  • 132: 2024 Walk & Roll Celebration!

    132: 2024 Walk & Roll Celebration!
    Sep 21 2024
    Happy International Walk & Roll Day! 🎉 In today’s special episode of FSHD Straight Talk, Tim interviews amazing Walk & Roll leaders to celebrate. Tune in as Mary Mauch and Suzy Kosten from Chicago, Ann Kolakowski from the Mid-Atlantic region, and Michael King from North Carolina share their stories and motivations for leading Walk & Rolls.

    Watch the episode on Facebook or YouTube for photo recaps of this year’s events! Just head to the FSHD Society’s profile or channel. (Plus, be on the lookout for an extended interview with Michael in an upcoming episode!)

    Join us in celebrating the power of the FSHD community today! For more information, visit fshdsociety.org/WalkRoll.
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    59 mins

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