Episodios

  • 158: Always a Work in Progress: Growth through Movement, Connection, and Adapation with Elissa

    158: Always a Work in Progress: Growth through Movement, Connection, and Adapation with Elissa
    Oct 28 2025
    Join Tim and special guest Elissa for a deep conversation covering topics including:

    • How FSHD can affect post-partum healing
    • Finding a physical therapist who explains exercise in your “language,”
    • Caring for your body and mind, and
    • Learning to own your FSHD and it’s progression
    Despite living with FSHD for over two decades, this was Elissa’s first conversation with another person living with FSHD. Her conversation with Tim is evocative, meditative, and a true testament to how living with FSHD is a complicated mixture of connection, movement, growth, and adaptation.

    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 7 m
  • 157: Expanded Access Crash Course with Ally Roets and Dr. Michelle Mellion

    157: Expanded Access Crash Course with Ally Roets and Dr. Michelle Mellion
    Oct 14 2025
    Join Tim, Ally, and Michelle for a crash course into expanded access. Expanded access allows folks living with rare diseases to request access to experimental drugs (those in clinical trials) even if they did not meet the clinical trial inclusion criteria. Ally and Michelle cover:
    —what is Expanded Access; how it differs from Open Label Extension; and who can qualify for EA
    —the application process and general timelines
    —Familial, medical, and financial considerations including how to cover costs that insurance might deny or, at minimum, not cover
    —the importance of increasing access to treatments and the benefits of expanded access.

    This episode is packed with insight and worth repeat listens.

    Ally Roets co-leads the month Parents’ Roundtable Gathering Place group and the Cure FSHD for All initiative. Ally is a passionate parent and advocate for access to treatments, and ultimately a cure, for everyone living with FSHD including those who fall outside trial inclusion criteria.

    Dr. Michelle Mellion is the Chief Medical Officer for the FSHD Society and a clinician well-known for her work in the FSHD space. Dr. Mellion has worked both as a clinician and within the biotech/pharmaceutical spaces and is a passionate advocate for treatment access and the Early Onset community.

    Please see the FDA website for more information on Expanded Access: https://www.fda.gov/news-events/public-health-focus/expanded-access

    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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    54 m
  • 156: Lived Experience Matters: The Impact of Storytelling in Rare Disease Communities & Advocacy with Michael King

    156: Lived Experience Matters: The Impact of Storytelling in Rare Disease Communities & Advocacy with Michael King
    Sep 23 2025
    Join Tim for an interview with Michael King, return guest and leader of the North Carolina Chapter and Walk & Roll. In this episode, King discusses the power of sharing your FSHD story to create community, as part of advocacy efforts, and to effect change.

    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 5 m
  • 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 11 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
  • 152: A Career Retrospective: Over a Decade of Care, Advocacy & Writing with June Kinoshita

    152: A Career Retrospective: Over a Decade of Care, Advocacy & Writing with June Kinoshita
    Jul 22 2025
    In honor of her retirement, join us for a final interview with June Kinoshita. Not only was June the first podcast guest, she served the FSHD Community with grace, vision, and unrelenting passion for over a decade. In this conversation with Tim, June reviews the highs, lows, and immeasurable growth she saw and cultivated. FSHD research, care, advocacy, and community building would not be what they are today without June. Thank you, June, for your time, your words, and your ever listening ear.

    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 10 m
  • 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
    Jul 8 2025
    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 m