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  • 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
  • 134: Minutes Matter: Early Onset Advocacy with Ally, Debbie & Kristin

    134: Minutes Matter: Early Onset Advocacy with Ally, Debbie & Kristin
    2024/10/22
    In this illuminating roundtable, Tim talks with Ally Roets, Debbie Eggleston, and Kristin Zwickau, the passionate moms leading the Early Onset Chapter. In addition to discussing how differently FSHD progresses in kids versus adults, Ally, Debbie, and Kristin touch on their past and upcoming advocacy efforts, the importance of changing clinical trial designs, and parenting in rare disease spaces. When FSHD progresses relentlessly and quickly, minute matters. As Ally said at the end, these moms are tenacious, not going anywhere, and going to get treatments and a cure for their kids.
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    1 時間 2 分
  • 133: Life Re-Written: Jumping in After Diagnosis with Michael King

    133: Life Re-Written: Jumping in After Diagnosis with Michael King
    2024/10/08
    Join host Tim Hollenback for a phenomenal conversation with Michael King, the new Chapter Director for North Carolina. A go-getter by nature, Michael went from advocating for his health and a diagnosis to experiencing life after diagnosis to his fullest potential. In addition to attending Connect 2024, Michael spearheaded the North Carolina Walk & Roll and helped his F3 friends raise funds through their annual extinction run. Michael is a testament to the importance, power, and collective strength built through community. Tune in to hear his full story plus Tim’s thoughts on the recent Fulcrum trial news.

    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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    49 分
  • 132: 2024 Walk & Roll Celebration!

    132: 2024 Walk & Roll Celebration!
    2024/09/21
    Happy International Walk & Roll Day! 🎉 In today’s special episode of FSHD Straight Talk, Tim interviews amazing Walk & Roll leaders to celebrate. Tune in as Mary Mauch and Suzy Kosten from Chicago, Ann Kolakowski from the Mid-Atlantic region, and Michael King from North Carolina share their stories and motivations for leading Walk & Rolls.

    Watch the episode on Facebook or YouTube for photo recaps of this year’s events! Just head to the FSHD Society’s profile or channel. (Plus, be on the lookout for an extended interview with Michael in an upcoming episode!)

    Join us in celebrating the power of the FSHD community today! For more information, visit fshdsociety.org/WalkRoll.
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    59 分
  • 131: Find Your Person and Your Passion: FSHD Straight Talk with Brittany Lauro

    131: Find Your Person and Your Passion: FSHD Straight Talk with Brittany Lauro
    2024/09/10
    Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. A Team Captain and volunteer for the Sacramento Walk & Roll, Brittany is a world traveler who turned to photography as FSHD affected her ability to walk and hike. In addition to discussing the importance of spousal support, Brittany shares humorous anecdotes from married life including the moment her husband thought she was going to tell him about her FSHD diagnosis. Tune in for her story of love, mindfulness, and community building.

    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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    57 分
  • 130: Home Safety & Respiratory Wellness with Dan Wilson

    130: Home Safety & Respiratory Wellness with Dan Wilson
    2024/08/27
    In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. In addition to discussing resources for home safety and building support networks to help with FSHD’s relentless progression, Dan discusses his hope to build an FSHD community in the Indianapolis area. FSHers of Indiana, if you’re listening, reach out!

    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 分