{"type":"rich","version":"1.0","title":"World FSHD Day 2026 Special Episode","description":"Happy World FSHD Day šŸŠšŸ§” 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\n\nVisit 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.\n\nhttps://fshduk.com/\n\nCheck out their social media for the June Countdown to World FSHD: a daily campaign of informational posts!\n\nFacebook: @FSHDUK\nInstagram: @fshd.uk\nX: @FSHDUKgroup\n\n-------------------------------------------------------------------------------------FSHD Canada\n\nVisit 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.\n\nhttps://fshd.ca/\n\nFacebook: @FSHDCanadaFoundation\nInstagram: @fshdcanada\n\nCheck 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.\n\nInstagram 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!\n\nFSHD Society Blog (https://www.fshdsociety.org/2018/06/07/world-fshd-day-backstory/)\n\nLearn more about everything happening across the globe in 2026:\n\nWorld FSHD Alliance Live Blog (https://fshdworldalliance.org/one-collective-voice-stories-from-world-fshd-day-2026/)\nFSHD Society Live Blog (https://www.fshdsociety.org/2026/06/17/world-fshd-day-2026/ )\n\n-------------------------------------------------------------------------------------šŸŠšŸ§”Double Your Impact šŸŠšŸ§”\n\nRussell has FSHD. Selina fights alongside him. This World FSHD Day, they're matching every gift you makeā€”dollar for dollarā€”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 youā€™ll find yourself in these episodes and know you are not alone.\n\nOn 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.\n\nIf you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.\n\nEmail: FSHDRadio@FSHDSociety.Org\n\nYou 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!","author_name":"FSHD Straight Talk with Tim Hollenback","author_url":"https://audioboom.com/channels/4986411-fshd-straight-talk-with-tim-hollenback","provider_name":"Audioboom","provider_url":"https://audioboom.com","width":480,"height":95,"thumbnail_url":"https://audioboom.com/i/43704099/600x600/c","thumbnail_width":600,"thumbnail_height":600,"html":""}