Almost 1 year to date, Art Abrams went from podcast listener to podcast guest, BetterLife FSHD Ambassador, and Leader of the new Iowa Chapter. In this episode, Tim and Art discuss life after diagnosis, workshopping how to tell folks, and the importance of finding and creating community support. For Art, lonliness constitutes one of the hardest parts of FSHD, inspiring him to make sure no one ever faces FSHD alone. This heartfelt, artful episode is not one to miss.

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 we’re sharing a remastered version of an episode from 2022 featuring Claire Szabo-Casella, author of The Red Scooter Diaries and start of the short documentary film of the same name. During this phenomenal conversation, Claire and Lou discuss their efforts to create more accessible spaces in AZ to increase quality of life for folks with FSHD and additional disabilities. Claire and Lou discuss how they met, the vulnerability and trust required for an inter-abled relationship, and how to make sure you always keep growing and exploring.

You can watch The Red Scooter Diaries here: https://www.youtube.com/@redscooterdiaries

In 2024, Lou passed. He is greatly missed by Claire and their Arizona FSHD Community.

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!

Tim kicks off 2026 by interviewing Jessica Ryley Hammond, a counselor running for Harford County Council. A lifelong athlete and horse-rider, Jessica was inspired to run for County Council because her rural community expanded so quickly, the infrastructure couldn’t keep up. In addition to discussing how FSHD affected her ability to ride, Jessica touches on how FSHD impacts her ability to climb hilly neighborhoods and the useful ability to hold a stone-face. We look forward to tracking Jessica’s campaign with the primary in June 2026.

Learn more about Jessica’s platform on her campaign Facebook page.

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!