FSHD Straight Talk with Tim Hollenback

By: FSHD Straight Talk
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  • Summary

  • 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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Hygiene & Healthy Living Science Social Sciences
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Episodes
  • 139: “We don’t grow in the good times. We grow during challenges.” FSHD Straight Talk with Dr. Jennifer Egert

    139: “We don’t grow in the good times. We grow during challenges.” FSHD Straight Talk with Dr. Jennifer Egert
    Jan 28 2025
    Join host Tim Hollenback for a heartfelt and honest conversation with returning guest, Dr. Jennifer Egert. A licensed clinical psychologist living with FSHD, Egert guides Tim through her own reflections on decreased mobility, clinical trial participation, connection with others, and the importance of quieting the world around us so we can think and breathe. Winter encourages us to hibernate and rest. Take a deep breath and shift yourself towards a more mindful season. 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 hr and 7 mins
  • 138: Progress & Hope in FSHD Research with Dr. Lucienne Ronco, FSHD Straight Talk

    138: Progress & Hope in FSHD Research with Dr. Lucienne Ronco, FSHD Straight Talk
    Jan 14 2025
    Grab your coffee, a pen, and a notebook and curl up for a masterclass in FSHD Research and developments with Dr. Lucienne Ronco. In the first FSHD Straight Talk episode of 2025, host Tim Hollenback talks everything FSHD research with the new Chief Science Officer of the FSHD Society. Dr. Ronco discusses: her work designing clinical trials at Fulcrum; initial insights from and plans for the Fulcrum Phase 1 and Phase 2 trial date; the promise of Avidity; and her hope-filled approach to working in the FSHD landscape. After their conversation, Tim offers advice, reflection on 2024, and his own hopes for FSHD treatments in the new year.

    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, Facebook, and wherever you get your podcasts. Subscribe to make sure you never miss an episode!
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    58 mins
  • 137: BetterLife FSHD Can Help You Back, FSHD Straight Talk with Amy Bekier and Kayliegh Worek

    137: BetterLife FSHD Can Help You Back, FSHD Straight Talk with Amy Bekier and Kayliegh Worek
    Dec 10 2024
    You’ve seen the social media posts and heard the ads, now join us for a deep dive into BetterLife FSHD. This week, Tim is joined by Amy Bekier, BetterLife FSHD Focus Group Member, and Kayleigh Worek, BetterLife Program Manager. Together, they discuss:

    ––How BetterLife uses surveys to collect comprehensive data from platform users
    ––How survey data can match users with clinical trials/research opportunities AND provide researchers with information to conduct their research
    ––Current and upcoming features and benefits
    ––How Better Life provides resources and connections to help everyone live a Better Life while living with FSHD.

    As Kayleigh said, “We’re really hoping [the platform] can be your one stop shop to live your best life with FSHD. We’re tackling a lot of needs and we want it to be able to help you back.”

    ***About BetterLife FSHD***
    BetterLife FSHD is a health and research platform for people with FSHD. Our mission is to provide you with tools and resources to better understand and manage your FSHD, all while contributing to groundbreaking research.

    BetterLife FSHD is owned and managed by the FSHD Society. Learn more and sign up today at www.BetterLifeFSHD.org.


    ***About FSHD Straight Talk***
    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.

    Episodes highlighting members of the FSHD Community drop on the 2nd & 4th Tuesday of the month. Listen on Youtube, Facebook, Spotify, or wherever you get your podcasts.

    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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    47 mins

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