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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About this listen

 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.

 Hygiene & Healthy Living Science Social Sciences
Episodes
  • 149: World FSHD Day Special - Supercut

    149: World FSHD Day Special - Supercut
    Jun 20 2025
    It’s World FSHD Day, a global day to raise awareness about FSH Muscular Dystrophy, it’s symptoms, and our fight for a cure. Join Tim for a special edition episode: our first ever SUPERCUT. In addition to Tim’s thoughts about World FSHD Day, the importance of the color orange, and our history, we’ve stitched together impactful moment from the last year of the podcast. Join us for stories and insight from Nia Stivers, Jennifer Egert, Chris Carno, Dan Wilson, and Debbie, Kristin, and Ally of our Early Onset Parents’ Roundtable.

    For more information about World FSHD, please visit https://www.fshdsociety.org/get-involved/world-fshd-day/

    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 7 mins
  • 148: Rolling Around Fundraising: The Story & Perseverance of the Ahlers Family

    148: Rolling Around Fundraising: The Story & Perseverance of the Ahlers Family
    Jun 10 2025
    Join Tim for a conversation with siblings Michele and Michael Ahlers about family, fundraising, and FSHD. Listen as Michael recounts Michele giving him the “FSHD frisk” and Michele shares her complicated emotions at Michael’s diagnosis shortly after the siblings re-entered each other’s lives. Committed to supporting each other and the FSHD community through training, healthy eating, and fundraising, tune in for the Ahlers’ Family story of perseverance.

    Support Michael in the 2025 Triple Bypass: https://www.bikesignup.com/ahlers-fshd

    About the Triple Bypass: https://www.triplebypass.org/

    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!

    More information about the 6/7/25 Ride: "Words aren’t enough to express my gratitude to Lindsey and Sarah (of Boulder Sports Physiotherapy) and the dozens of people (many affiliated with Evergreen Ride Club) who showed up and made this fundraiser a huge success. I’m blessed with an amazing extended family! All of you are the best people I know, and I’m thrilled so many new connections were made. Best of all, we raised over $1,600 for the FSHD Society! Every little bit counts towards their mission to fund the research and treatment that help improve life for those living with this terrible disease. On behalf of my sister Michele and I, and from the bottom of our hearts, THANK YOU! " -Michael Ahlers
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    44 mins
  • 147: Hopeful Science: an Interview with the Myoterra Team

    147: Hopeful Science: an Interview with the Myoterra Team
    May 27 2025
    You might have heard the exciting news: an undergraduate research team led by Heloise Hoffmann received $50,000 to fund their research into a novel treatment for FSHD. Join Tim for a conversation with Heloise, who lives with FSHD, and Alice as they discuss their unique approach, the varying pace of research, and their nearly two year process to design and fund their project. From patient-focused interviews and endless hours in the lab, the undergrad team at Myoterra Biosciences is dedicated to finding a cure for FSHD as science continues to advance at a breakneck pace.
    For more information on Myoterra, read our recent blog post: https://www.fshdsociety.org/2025/04/21/hope-in-the-laboratory/

    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
    33 mins
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