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FSHD Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

De: FSHD Straight Talk
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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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Episodios
  • 155: 2025 Walk & Roll Special

    155: 2025 Walk & Roll Special
    Sep 20 2025
    Join us for the 2025 Walk & Roll special episode of FSHD Straight Talk with Tim Hollenback. This year’s episode features: Amy Bekier, San Diego; Ian Barr, Long Island, NY; Mollie Garrett, Virginia; Meg Hart, Mid-Atlantic; and CeCe Bell, Intermountain (Idaho). This year’s Walk leaders represent folks living with FSHD, care partners, and loving family; “OG” leaders, veteran walk & rollers, and first-timers; and nearly every region in the continental US. Walk & Roll season is always filled with heart-warming stories, and this year’s Special is no different.

    From maze races and specially-designed coloring books, to costume contests and dance teams, to iconic views, Walk & Rolls provide a space for inter-abled solidarity, community connections, and shared joy. To our Walk Leaders, Team Captains, and volunteers, thank you for your work to raise awareness about FSHD and funds to support our work to find treatments, and a cure, for FSHD.
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    1 h y 9 m
  • 154: Don’t Let It Get to You: Living & Growing with FSHD with Kendra Vaalemon

    154: Don’t Let It Get to You: Living & Growing with FSHD with Kendra Vaalemon
    Aug 26 2025
    This week, Tim spoke with Kendra, an Idaho resident with a family history of FSHD. Diagnosed at age 9, Kendra knew she had FSHD as early as 6 as her symptoms resembled those of her older brother. Kendra discusses how her faith helps her deal with the constant grieving process caused by FSHD: the grief at losing her brother so young and the grief that comes with each changed ability and lost muscle. Kendra’s story is one of perseverance, community support, love, and dark humor in the wake of FSHD relentless progression.
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    1 h y 16 m
  • 153: More Laughter, More Love: Reflections on an Inter-Abled Relationship with Leah & Joe Lee

    153: More Laughter, More Love: Reflections on an Inter-Abled Relationship with Leah & Joe Lee
    Aug 12 2025
    Loving someone with FSHD means loving someone through constant change, a path that Leah & Joe have traveled together since they met in 8th grade. Despite coming from a family with FSHD, Joe faced a long diagnostic journey filled with uninformed and misinformed care providers, leading the couple to do their own research with considerable trial and error. In this episode they discuss the importance of community support, how to adapt, supplements and vitamins, why you need to hydrate, and so much more. Married for 15 years and together for 20, Leah & Joe’s partnership proves their philosophy: when living in an inter-abled relationship, what you really need is more laughter and more love.

    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 h y 11 m
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