• FSHD Straight Talk with Tim Hollenback

  • 著者： FSHD Straight Talk
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FSHD Straight Talk with Tim Hollenback

著者： 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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あらすじ・解説

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.
社会科学 科学 衛生・健康的な生活
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エピソード
  • 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
    2024/12/10
    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 分
  • 136: Notes of Gratitude with Gracie Caggiano and Ben Livingston

    136: Notes of Gratitude with Gracie Caggiano and Ben Livingston
    2024/11/28
    Today’s special episode spotlights two gifted musicians whose artistry inspires gratitude and reflection. Gracie Caggiano, a Kansas City-based singer-songwriter, shares her unique approach to crafting soulful, poetic music that blends intricate guitar work with heartfelt lyrics. Ben Livingston, a multi-talented Austin artist, talks about his eclectic sound, his love for collaboration, and how music has been a constant source of joy and connection.

    We’re grateful for all our listeners and hope you enjoy hearing performances from Gracie and Ben!

    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.

    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 時間 18 分
  • 135: FSHD Cannot Stop an Adventurous Spirit with Don Burke, FSHD Straight Talk

    135: FSHD Cannot Stop an Adventurous Spirit with Don Burke, FSHD Straight Talk
    2024/11/12
    “There was a time when those of us with FSHD might not have known anyone with FSHD outside of our families.” Nearly 30 years after his diagnosis, Don Burke drove around the US and Canada for 93 days, including a stop at the 2024 FSHD Connect Conference in Denver. Join us for a heartwarming episode featuring Don as he shares stories and insights from his most recent trip and years of previous adventures. A “Midwest nice” risk taker, Don wants everyone with FSHD to enjoy life to the fullest. “We have to take risks. We have to plan more than most. I have to adapt so that I never say, ‘I regret not trying that.’”

    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 時間 4 分

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