Episodios

  • 162: AMA: Answering Your Questions About FSHD

    162: AMA: Answering Your Questions About FSHD
    Dec 30 2025
    In our first ever Ask Me Anything (AMA) episode, Tim hosts a panel of FSHD experts to answer questions submitted by you! Amanda Hill, Dr. Lucienne Ronco, and Dr. Michelle Mellion answer questions about how to effectively describe pain to your care providers, how AI is advancing or assisting FSHD research and drug development, and more. Everyone experiences FSHD differently, and we learn the most, when we come together.

    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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    51 m
  • 161: Pilates for FSHD, Rehab & Muscle Health: an Interview with Carme Farré, CEO/Founder of FaceToned

    161: Pilates for FSHD, Rehab & Muscle Health: an Interview with Carme Farré, CEO/Founder of FaceToned
    Dec 9 2025
    Join Tim for a fascinating episode with Carme Farré, CEO/Founder of FaceToned. From a young age, Carme found herself fascinated with yoga, pilates, and holitics health and wellness practice. She comes from a family where multiple members live with FSHD and was surprised that her career provided tools to help her family, and, eventually herself. Recently diagnosed, Carme is a passionate advocate for providing natural structure and support for muscle groups affected by FSHD, with the added side effect of laughter and improved self-image. This episode is a phenomenal conversation about how intentionally moving your tiny muscles can absolutely make a difference.

    What workouts or fitness practices have helped you manage your FSHD? Tim would love to hear from you!


    FaceToned was founded in 2014 with a mission of supporting women through wellness practices, increased confidence, and graceful aging. FaceToned combines elements of yoga, pilates, and physical therapy to help strengthen, rehab, and support muscles in the face and neck.

    • Website: https://facetoned.com/
    • FaceToned Instagram: https://www.instagram.com/Face.Toned
    • FaceToned YouTube: https://www.youtube.com/channel/UCoMx6vZAfZ2n8opQDIp7tlg
    • Carme’s Instagram: https://www.instagram.com/carmefarre_com/

    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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    59 m
  • 160: Adapting the Best We Can with Quinn Wilton

    160: Adapting the Best We Can with Quinn Wilton
    Nov 25 2025
    In this week’s episode, Tim speaks with Quinn Wilton, a social worker and DIY fundraiser, about her life, career trajectory, and growing community. While Quinn does give away some of the secrets to a stellar event, the importance of family, sibling, and community support is at the core of this issue. Tune in to hear Quinn’s incredible story from life in Canada’s urban and rural areas.

    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 3 m
  • 159: Do Hard Things: Movement is Medicine & Riding to Raise Awareness about Early Onset FSHD with George Pollock & Ally Roets

    159: Do Hard Things: Movement is Medicine & Riding to Raise Awareness about Early Onset FSHD with George Pollock & Ally Roets
    Nov 11 2025
    In this episode, we have two return guests: George Pollock, Team FSHD Cycling, and Ally Roets, Parents’ Roundtable Leadership. George and Ally join Tim to discuss their participation in the upcoming Tour de Tuscon, a world-class cycling race, and their work to raise awareness about and funds for Early Onset FSHD research & treatment access. While Ally covers the importance of Early Onset specific research and funding, Geroge discusses the mindset and intentional training behind his training. Living with FSHD is like competing in an endurance event: it takes mindset, training, nutrition and hydration, consistency, support, and rest.

    As George says: Movement is medicine, you have to do hard things.

    Learn more about Early Onset FSHD: https://www.fshdsociety.org/early-onset-fshd/

    Help George, Ally, and the rest of our riders reach their goal of raising $30,000 to support Early Onset FSHD research, support & treatments.
    Ally’s Page: https://www.eltourtucson.org/earlyonsetfshd
    George’s Page: https://www.eltourtucson.org/fshdcyclist
    Tom’s Page: https://www.eltourtucson.org/Race/80091/Donate/fSbhnc05DGgxWHeq

    This episode contains a video created by Sam Ray. You can view the original video on Youtube: https://youtu.be/PydgQ7C7F08?si=juUA7u1L9VBMmB74

    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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    47 m
  • 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