Episodes

  • 127: Movement is Medicine: The Story Behind FSHD Cycling

    127: Movement is Medicine: The Story Behind FSHD Cycling
    Jul 9 2024
    In this episode of FSHD Straight Talk, host Tim Hollenback talks with George Pollock, longtime member of the FSHD Society Board of Directors and a powerful advocate FSHD treatments. Join Tim and George for a conversation about the healing power of movement and to hear more about George’s passion for endurance athletics and upcoming participation in the Triple Bypass Race. As George said during his interview, “You could be gardening, it doesn't matter, as long as you're moving...to the best of your abilities.”
    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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    40 mins
  • 126: FSHD Straight Talk: Behind the Mic with Chris Carrino

    126: FSHD Straight Talk: Behind the Mic with Chris Carrino
    Jun 25 2024
    In this episode of FSHD Straight Talk, Tim interviews Chris Carrino, the play-by-play announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD! Chris talks about his career starting as a part-time producer to becoming a prominent voice in sports broadcasting. He also discusses life with FSHD and advocacy work, including a recent trip to Capitol Hill. This is a slam dunk interview you don’t want to miss!

    If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.

    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.

    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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    59 mins
  • 125: World FSHD Day Special

    125: World FSHD Day Special
    Jun 20 2024
    It’s World FSHD Day! To celebrate today, Tim Hollenback, FSHD Straight Talk host, talks with: Ricardo Gerpe from FSHD Spain; Chelsea Moeller from the FSHD Society; Rick & Terry Colella from Friends of FSH Research; Jennifer Cherniwchan or the Alberta Chapter; Chris Carrino, announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD; and volunteer Priscilla Sharun.

    For more information about World FSHD, please visit the FSHD Society website.

    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

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    2 hrs and 9 mins
  • 124: Using Storytelling and Activism to Build Awareness of FSHD in China with Wang Wen

    124: Using Storytelling and Activism to Build Awareness of FSHD in China with Wang Wen
    Jun 11 2024
    In this episode of FSHD Straight Talk, Tim speaks with Wang Wen, a passionate advocate and prolific storyteller living in China. Following his long road to diagnosis, Wang has sprung into action leading support groups, creating educational documentaries, and using his social media platforms to raise awareness about FSHD. In 2025, Wang even hopes to write a book collecting stories from Chinese FSHers! Tune in to hear how Wang uses storytelling and activism to build awareness and push back against isolation. Thank you to Wang for reaching out to be on the podcast! If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media. 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. 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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    37 mins
  • 123: FSHD Straight Talk: Commitment & Consistency, the Keys to Building Strength and Maintaining Bodily Autonomy with Priscilla Sharun

    123: FSHD Straight Talk: Commitment & Consistency, the Keys to Building Strength and Maintaining Bodily Autonomy with Priscilla Sharun
    May 28 2024
    When a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host Tim Hollenback and guest Priscilla Sharun discuss their exercise routines, building strength through consistency, and the importance of committing to your health. For Priscilla, regular exercise, healthy eating, mindfulness, and an array of supplements have increased her strength and flexibility, allowing her to be healthier, happier, and more present with her family. Catch the entire episode for tips, tricks, and a little homework from Tim!

    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.

    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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    46 mins
  • 122: Willpower and Determination in the Face of FSHD Progression with Callum Arras

    122: Willpower and Determination in the Face of FSHD Progression with Callum Arras
    May 14 2024
    In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of FSHD progression with Callum Arras. Bridging their nearly 20 year age gap, Hollenback and Arras find common ground in their belief that self-knowledge, willpower, and determination helps them maintain activities, mobility, and their sense of self. Conversational yet sincere, Hollenback and Arras' sharing of experiences and feelings is not an episode to miss.

    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.

    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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    44 mins
  • 121: On Stage with Actress Madison Ferris: A Look at "All of Me"

    121: On Stage with Actress Madison Ferris: A Look at "All of Me"
    Apr 23 2024
    In today’s episode of FSHD Straight Talk, Madison Ferris dives into her latest project, the off-Broadway romantic comedy “All of Me,” which starts today! Madison shares her experiences of bringing diversity to the stage as the first wheelchair user to lead on Broadway. Catch her thoughts on how roles like hers can shift perceptions and open doors in the arts. You can see Madison live from April 23rd to June 16th in “All of Me.” Tickets available at https://thenewgroup.org/production/all-of-me/
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    34 mins
  • 120: A Candid Conversation About Life During and After Diagnosis

    120: A Candid Conversation About Life During and After Diagnosis
    Apr 9 2024
    In this episode, FSHD Straight Talk host Tim Hollenback speaks with Trish about life during and after diagnosis. In this candid conversation Trish (last name withheld for privacy) and Tim discuss the impact of physical therapy, the frustrations that PTs often know or do more than PCPs, and additional intricacies and intimacies of living with FSHD. As an added bonus, Trish delivers Tim's favorite podcast line EVER. You don't want to miss this honesty, funny, vulnerable conversation.
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    59 mins