FSHD Radio
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Podcast Overview
<div>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. <br> <br> <br> </div>
Language
🇺🇲
Publishing Since
1/29/2019
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Recent Episodes
June 20, 2026
172: World FSHD Day 2026 Special Episode
<div> <p>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! -------------------------------------------------------------------------------------<strong>FSHD UK <br></strong><br>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. </p><p><a href="https://fshduk.com/">https://fshduk.com/</a> </p><p>Check out their social media for the June Countdown to World FSHD: a daily campaign of informational posts! </p></div><ul> <li>Facebook: @FSHDUK</li> <li>Instagram: @fshd.uk</li> <li>X: @FSHDUKgroup </li> </ul><div> <p><br>-------------------------------------------------------------------------------------<strong>FSHD Canada </strong></p><p>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. </p><p><a href="https://fshd.ca/">https://fshd.ca/</a></p></div><ul> <li>Facebook: @FSHDCanadaFoundation</li> <li>Instagram: @fshdcanada</li> </ul><div> <p>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. </p><p>Instagram Reel: <a href="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==</a> -------------------------------------------------------------------------------------Learn more about the history of World FSHD Day, Marco and Sandro Biviano, and this growing international movement! </p></div><ul><li> <a href="https://www.fshdsociety.org/2018/06/07/world-fshd-day-backstory/">FSHD Society Blog</a> </li></ul><div>Learn more about everything happening across the globe in 2026:</div><ul> <li><a href="https://fshdworldalliance.org/one-collective-voice-stories-from-world-fshd-day-2026/">World FSHD Alliance Live Blog</a></li> <li><a href="https://www.fshdsociety.org/2026/06/17/world-fshd-day-2026/%20">FSHD Society Live Blog</a></li> </ul><div> <p>-------------------------------------------------------------------------------------🍊🧡Double Your Impact 🍊🧡 </p><p>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. <a href="https://give.fshdsociety.org/campaign/809141/donate?c_src=wfshdd26&c_src2=socialmedia">Join them.</a> -------------------------------------------------------------------------------------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.</p><p>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. </p><p>If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.</p><p>Email: FSHDRadio@FSHDSociety.Org</p><p>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!</p></div>
June 9, 2026
168: Against the Current: a Conversation with Lexi and Kate
<div> <p>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. </p><p>Watch Against the Current on YouTube: <a href="https://www.youtube.com/watch?v=Akal09o1Hfw&t=21s">https://www.youtube.com/watch?v=Akal09o1Hfw&t=21s</a> </p><p>Dir. Lexi Levine neé Pappas, 2025 </p><p>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. </p><p>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. </p><p>If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media. </p><p>Email: <a href="mailto:FSHDRadio@FSHDSociety.Org">FSHDRadio@FSHDSociety.Org</a> </p><p>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! </p></div>
May 26, 2026
170: The Calm in the Storm: Veronika Hahn
<div> <p>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.</p><p>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. </p><p>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. </p><p>If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media. </p><p>Email: <a href="mailto:FSHDRadio@FSHDSociety.Org">FSHDRadio@FSHDSociety.Org</a> </p><p>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! </p></div>
187 total episodes available
Recent guests on FSHD Radio
Guests from recent episodes — sign up to see every guest that has ever appeared on this show.
Aidan Mace
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Nia Stivers
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Jennifer Egert
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Chris Carno
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Dan Wilson
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Debbie
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Kristin
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Ally
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Michele Ahlers
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Michael Ahlers
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Heloise Hoffmann
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Alice
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Frequently asked questions
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- What is FSHD Radio?
<div>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. <br> <br> <br> </div> - How often does this podcast release new episodes?
This podcast updates weekly.
- Where can I listen to this podcast?
This podcast is available on 10 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Yes, this podcast regularly features guests.
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