FSHD Radio

About FSHD Radio

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.

Publisher

FSHD Straight Talk

Category

health & fitness · science · society & culture

Language

en

Explicit

No

First episode

29 Jan 2019

Latest episode

9 Oct 2026

Latest episodes

195 episodes in the feed.

1. 

   9 Oct 2026

   180: Being Funny When You Don't Feel Funny with Jim Shaughnessy

   Jim Shaugnessy is looking for a girlfriend. That’s not a joke, even though he spent his life writing for late night TV including Conan O’Brien and The Tonight Show. In this candid conversation, Shaughnessy’s trademark mix of Philly frankness and not shying away from difficult topics is on display. From his fear of falling and the difficulties of living alone, Shaughnessy discusses how to adapt, how to keep going, and how to keep being funny when life feels anything but. Please note: this episode contains some morbid jokes and light swearing. 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 (mailto: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!

2. 

   29 Sept 2026

   179: Expand Your Life: Beginning, Again & Again, with Christine Hoene

   Christine Hoene is a force of nature. From windsurfing to roller pole to ice climbing, there are very few sports she hasn’t tried. Convinced by a dream in her 30s to live life to the fullest, Hoene chose to try a new sport, every year, for an entire year. While some sports, like snowboarding, she gave up with glee, others, like aerial silks, have persisted. But it’s not her commitment to sports that makes Hoene so interesting, it’s her love of trying new things and starting over as a beginner, again and again. This week, Hoene joined Tim Hollenback to share how she perseveres again FSHD – fighting to expand her life, rather than contract it. Hoene also discusses The Whistler's Daughter, her self-published memoir, which debuted on Monday, Sept. 28, 2026. You can learn more and purchase a copy of the book at https://thewhistlersdaughter.net/ (https://thewhistlersdaughter.net/). *20% of all proceeds going towards supporting the FSHD Society and our work to cure FSHD. 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!

3. 

   19 Sept 2026

   178: Why We Roll, 2026 Walk & Roll Special Episode

   Join us for the 2026 Walk & Roll special episode of FSHD Straight Talk with Tim Hollenback. This year’s episode features: Dana Simone-Kurtz, San Diego; Joanne Dalessandro, Chicagoland; and Jane Roberts, Alberta, Canada. This year’s Walk leaders represent folks living with FSHD, care partners, and loving family Walk & Roll season is always filled with heart-warming stories, and this year’s Special is no different. From maze races and ice cream, to pups outfitted in orange, to beautiful views, Walk & Rolls provide a space for inter-abled solidarity, community connections, and shared joy. To our Walk Leaders, Team Captains, and volunteers, thank you for your work to raise awareness about FSHD and funds to support our work to find treatments, and a cure, for FSHD. https://give.fshdsociety.org/event/2026-international-virtual-walk-and-roll-to-cure-fshd/e777784 (https://give.fshdsociety.org/event/2026-international-virtual-walk-and-roll-to-cure-fshd/e777784) 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 (mailto: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!

Who has been a guest on FSHD Radio

Names identified in recent episode analyses. Showing up to five guests.

• Aidan Mace
• Nia Stivers
• Jennifer Egert
• Chris Carno
• Dan Wilson

Reach and audience

Public platform figures. Ratings count people who left a rating, not total listeners.

YouTube views

446,743

Score snapshot 15 Sept 2025

Apple Podcasts (US)

5.0 / 5

3 ratings

Spotify

5.0 / 5

13 ratings

Podcast Authority Score: 78 / 100

A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.

Quality

90

Social presence

0

YouTube

86

Engagement

77

Contact FSHD Radio

Guest appearances

Books guests

Based on episode analysis; this does not confirm that the show is currently accepting guests.

Questions about FSHD Radio