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/ 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/ 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== -------------------------------------------------------------------------------------Learn more about the history of World FSHD Day, Marco and Sandro Biviano, and this growing international movement!  FSHD Society Blog Learn more about everything happening across the globe in 2026: World FSHD Alliance Live Blog FSHD Society Live Blog -------------------------------------------------------------------------------------🍊🧡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. -------------------------------------------------------------------------------------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!