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!

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/
• Instagram: @graciecaggiano
• Bandcamp: 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

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, 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

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/

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!