エピソード

  • 151: A Parent’s Perspective: FSHD History, Advancements & What We Can Do Now

    151: A Parent’s Perspective: FSHD History, Advancements & What We Can Do Now
    2025/07/08
    This week, Dr. Ray Huml joined host Tim Hollenback for a conversation that dives deep into FSHD research, history, and treatment development. Dr. Huml, a dedicated caregiver, parent, and rare disease specialist, discussed his work on writing a book about rare disease care, disability rights advocacy, and small ways we can create massive change for loved ones living with FSHD.

    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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    52 分
  • 150: The Power of Vulnerability with Aidan Mace, FSHD Straight Talk with Tim Hollenback

    150: The Power of Vulnerability with Aidan Mace, FSHD Straight Talk with Tim Hollenback
    2025/06/24
    In this episode, Tim speaks with Aidan Mace about the power of vulnerability. Diagnosed within the last 4 months, Mace shares his diagnosis story – paging Dr. Google! – experiences with grief, and how FSHD changed his career path. Trained as an Emergency Responder, Fire Fighter, and EMT, Mace’s FSHD diagnosis spurred him to find a new way to continue serving his community. Mace now serves as the Account Manager for Fire Fighter Partnership at the Muscular Dystrophy Association. Tune in to hear Mace’s inspiring story.

    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 時間 5 分
  • 149: World FSHD Day Special - Supercut

    149: World FSHD Day Special - Supercut
    2025/06/20
    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 時間 7 分
  • 148: Rolling Around Fundraising: The Story & Perseverance of the Ahlers Family

    148: Rolling Around Fundraising: The Story & Perseverance of the Ahlers Family
    2025/06/10
    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 分
  • 147: Hopeful Science: an Interview with the Myoterra Team

    147: Hopeful Science: an Interview with the Myoterra Team
    2025/05/27
    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!
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    33 分
  • 146: Fiercely an Advocate: Living with Early-onset FSHD

    146: Fiercely an Advocate: Living with Early-onset FSHD
    2025/05/13
    Join Tim for a conversation with Tatiana Garcia, a college student in California. Tim & Tatiana talk misdiagnosis, the importance of family and community support, everyday adaptations, and how to become a fierce advocate for yourself and others.

    Want to be on the podcast? Reach out like Tatiana did on social media or send Tim an email at FSHDRadio@FSHDSOciety.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!

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    53 分
  • 145: Powering the Path Forward with Erin Saxon

    145: Powering the Path Forward with Erin Saxon
    2025/04/22
    Join Tim for a conversation with Erin Saxon, Marketing Director, about a new look for the FSHD Society. From the empathy and intention behind brand colors to more cohesive messaging, Tim and Erin cover the full gamut of the process undertaken to rebrand the FSHD Society. Tune in for a look at how the Society will power the path forward.

    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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    45 分
  • 144: Growth Through Coaching, a Solo Episode of FSHD Straight Talk with Tim Hollenback

    144: Growth Through Coaching, a Solo Episode of FSHD Straight Talk with Tim Hollenback
    2025/04/08
    In this rare solo episode, hear host Tim Hollenback’s FSHD story and his personal philosophy on coaching. Adapted from his 2025 VLS story, don’t miss this opportunity to learn about Tim, the history of the podcast, and how an FSHD diagnosis can spur anyone into action.

    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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    21 分