FSHD Straight Talk with Tim Hollenback

What does it mean to “raise awareness”? Is it as simple as wearing a shirt and engaging in a conversation? According to Sam & George, the answer is yes, and. Yes, wear the shirt, have the conversation, AND share your WHY. More often than not, it’s the reason behind the shirt, whether a personal story or family connection, that makes the difference.George and Sam both have personal connections to FSHD through their diagnosis and their work to raise awareness about and funding for folks living with Early Onset FSHD. In addition to a update re: funds raised during the 2025 Tour de Tucson, George & Sam share their renewed reasons for participation, and where they hope to go in the future.Learn more about Early Onset FSHD: https://www.fshdsociety.org/living-with-fshd/understanding-fshd/early-onset-fshd/Learn more about the Tour de Tucson: https://eltourdetucson.org/el-tour-de-tucson/non-profits/Support our riders: https://runsignup.com/Race/80091/Charity/31068

Real life requires real answers, something Ryan Olson seeks to provide through his new website: RealFSHD.com. This week, Ryan Olson returns to the podcast to talk candidly about life with FSHD and why he created a site sharing what he’s found useful in the 25 years since his diagnosis. From an AI assistant called Dux to product recommendations to improve quality of life, the site offers hot takes and an easy to use interface. Leading with humor and a desire to problem solve, Ryan brings real insight for real life with FSHD. Check out the site: www.RealFSHD.comNote: Since the interview, Ryan switched from paid access to free access for all features.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: [email protected] 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! 

Jim Shaugnessy is looking for a girlfriend. That’s not a joke, even though he spent his life writing for late night TV including Conan O’Brien and The Tonight Show. In this candid conversation, Shaughnessy’s trademark mix of Philly frankness and not shying away from difficult topics is on display. From his fear of falling and the difficulties of living alone, Shaughnessy discusses how to adapt, how to keep going, and how to keep being funny when life feels anything but. Please note: this episode contains some morbid jokes and light swearing. 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: [email protected] 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! 

Christine Hoene is a force of nature. From windsurfing to roller pole to ice climbing, there are very few sports she hasn’t tried. Convinced by a dream in her 30s to live life to the fullest, Hoene chose to try a new sport, every year, for an entire year. While some sports, like snowboarding, she gave up with glee, others, like aerial silks, have persisted. But it’s not her commitment to sports that makes Hoene so interesting, it’s her love of trying new things and starting over as a beginner, again and again. This week, Hoene joined Tim Hollenback to share how she perseveres again FSHD – fighting to expand her life, rather than contract it. Hoene also discusses The Whistler's Daughter, her self-published memoir, which debuted on Monday, Sept. 28, 2026.You can learn more and purchase a copy of the book at https://thewhistlersdaughter.net/. *20% of all proceeds going towards supporting the FSHD Society and our work to cure 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: [email protected] 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! 

Join us for the 2026 Walk & Roll special episode of FSHD Straight Talk with Tim Hollenback. This year’s episode features: Dana Simone-Kurtz, San Diego; Joanne Dalessandro, Chicagoland; and Jane Roberts, Alberta, Canada. This year’s Walk leaders represent folks living with FSHD, care partners, and loving family Walk & Roll season is always filled with heart-warming stories, and this year’s Special is no different. From maze races and ice cream, to pups outfitted in orange, to beautiful 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. https://give.fshdsociety.org/event/2026-international-virtual-walk-and-roll-to-cure-fshd/e777784No 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: [email protected] 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!