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

• 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: 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!

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

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

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!

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

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!