172: World FSHD Day 2026 Special Episode

172: World FSHD Day 2026 Special Episode

Happy World FSHD Day 🍊🧡 On June 20th, folks living with FSHD and their communities come together to raise awareness about FacioScapuloHumeral Muscular Dystrophy. June 20th is a day for sharing stories and information about this rare, relentlessly progressing disease. In this year's World FSHD Day Special Episode, Tim speaks with Raj Badiani of FSHD UK and Neil Camarta of FSHD Canada. Raj and Neil discuss the significance of World FSHD Day and share details about events and awareness campaigns in their countries. From social media campaigns and revamped websites to painting Canada orange and free beers, this episode is a testament to how patient empowerment, community connection, and hope, have created and sustained a powerful movement to cure FSHD. Many thanks to Raj and Neil for joining us! -------------------------------------------------------------------------------------FSHD UK Visit their new website and learn about their important work to educate clinicians, create a robust clinical trial and care network across the UK, and foster an international, collaborative, FSHD community. https://fshduk.com/ [https://fshduk.com/]  Check out their social media for the June Countdown to World FSHD: a daily campaign of informational posts!  * Facebook: @FSHDUK * Instagram: @fshd.uk * X: @FSHDUKgroup  -------------------------------------------------------------------------------------FSHD Canada Visit their website to learn more about FSHD Canada's work to increase clinical trial opportunities and improve quality of care for Canadians living with FSHD. https://fshd.ca/ [https://fshd.ca/] * Facebook: @FSHDCanadaFoundation * Instagram: @fshdcanada Check out the Painting Canada Orange reel created by Genna, the Ontario-based grad student Neil mentioned. Genna's worked very hard to support the lighting of buildings and landmarks in all of Canada's provinces. Instagram Reel: https://www.instagram.com/reel/DZGDr01MoNk/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA== [https://www.instagram.com/reel/DZGDr01MoNk/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==] -------------------------------------------------------------------------------------Learn more about the history of World FSHD Day, Marco and Sandro Biviano, and this growing international movement!  * FSHD Society Blog [https://www.fshdsociety.org/2018/06/07/world-fshd-day-backstory/]  Learn more about everything happening across the globe in 2026: * World FSHD Alliance Live Blog [https://fshdworldalliance.org/one-collective-voice-stories-from-world-fshd-day-2026/] * FSHD Society Live Blog [https://www.fshdsociety.org/2026/06/17/world-fshd-day-2026/%20] -------------------------------------------------------------------------------------🍊🧡Double Your Impact 🍊🧡 Russell has FSHD. Selina fights alongside him. This World FSHD Day, they're matching every gift you make—dollar for dollar—because they know what's at stake and they believe we can make a difference. Join them. [https://give.fshdsociety.org/campaign/809141/donate?c_src=wfshdd26&c_src2=socialmedia] -------------------------------------------------------------------------------------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!

168: Against the Current: a Conversation with Lexi and Kate

This week Lexi Levine returns to the podcast accompanied by Kate, an adaptive crew athlete and subject of Lexi’s latest documentary film “Against the Current: Kate’s Fight for Inclusion.” Learn about crew (as a sport), Kate’s role as coxswain, living with a disability in Boston, and Lexi losing her drone in the Charles. In addition to the film, Lexi and Kate discuss their experiences living with FSHD, Lexi’s love of making films, and Kate’s approach to handling “The Stare” from able-bodied folks. A phenomenal conversation about an important film.  Watch Against the Current on YouTube: https://www.youtube.com/watch?v=Akal09o1Hfw&t=21s [https://www.youtube.com/watch?v=Akal09o1Hfw&t=21s]  Dir. Lexi Levine neé Pappas, 2025  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 [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!

170: The Calm in the Storm: Veronika Hahn

Veronika Hahn, like many in the FSHD community, is a life-long athlete who refuses to let FSHD steal her joy. In this episode, Hahn discusses her passion for extreme, endurance athletics including the Braveheart Run, Spartan Sports, and even training for her job as an Anesthesiologist. From her dedicated mindset to the details of her recent competition, Hahn discusses her perspective on life with FSHD: we have to live our lives with it because it’s always there, but it is NOT a given that FSHD will take away all your abilities or any specific abilities. 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 [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!

171: Tiny Desk Concert with Gracie Caggiano

In our first NPR-style Tiny Desk Concert, Gracie Caggiano joins Tim to perform two of her songs and discuss life as a singer-songwriter living with FSHD. Based in Kansas City, Caggiano’s vocals are ethereal and haunting, her guitar tuned alternatively, every aspect of her process embodying her disability. In addition to adapting her singing and playing to the ways FSHD has changed her body, Caggiano pushes venues in her area to be more inclusive, as concert venues rarely provide ramps and other accommodations for attendees or performers. From hopes for a chance to tour, to the adaptable beauty and vulnerability of each performance, this interview with Gracie is not one to skip.  This episode opens with “Dust” and also features “Petal” written and performed by Gracie Caggiano with videos shot by her partner.  Catch Gracie performing live at Sk8bar, recordBar, and Manor Fest. Listen to her music on Spotify, Soundcloud, and Bandcamp, and follow her on Instagram.  * Website: https://www.graciecaggiano.com/ [https://www.graciecaggiano.com/]  * Instagram: @graciecaggiano  * Bandcamp: https://graciecaggiano.bandcamp.com/album/i-cant-be-anything-but-human [https://graciecaggiano.bandcamp.com/album/i-cant-be-anything-but-human]  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 [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!

169: Set Your Face Like Flint, but Keep Your Masculinity Soft, Reflections with Ryan Olson

This week, Ryan Olson, a mechanic turned web designer and programmer, joins Tim for a nuanced discussion about life after diagnosis,  finding community support, and maintaining your masculinity as your muscles deteriorate. Both men discuss their career shifts from physical to less physical jobs and how this affected their ability to relate to other men and their own “manliness.” Reflective, Ryan discusses how faith helped him overcome isolation, body and masculinity issues, and inspired his recent shift to app design. As Ryan learned through his faith, “Set your face like flint,” remain strong emotionally, but allow your masculinity to soften, as it creates room for others.  Connect with Ryan on Instagram: @heythatryan  Check out his Linktree: https://linktr.ee/thatryan [https://linktr.ee/thatryan]  Learn more and join the waiting list for Flint: an app designed to help Christian men build daily discipline. Flint is a daily mission briefing — not a devotional app. Scripture. Consistency. Covenant. Built to forge the man you're called to be.  Website: https://thatryan.com/apps/flint/ [https://thatryan.com/apps/flint/]  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 [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!