FSHD Straight Talk with Tim Hollenback

FSHD Straight Talk

5.0 (3)
Health & Fitness
Updated Semimonthly

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.

Oct 9

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 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!
Sep 29

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/. *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!
Sep 19

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 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!
Sep 8

Every Day is a Gift with Stephen Pollock

Stephen Pollock is a dedicated father and pastor, living each day as a commitment to his faith. Born in Ireland, Pollock started his career practicing family medicine. In this episode he reflects on how his symptoms were visible as early as his med school anatomy classes, yet it would be almost 25 years until he received a diagnosis. From planning to a shifted future and living life to it’s fullest in the present, for Stephen Pollock, every day is a gift, don’t waste it. 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!
Aug 25

Beating FSHD with Positivity with Rami Jokinen

Rami Jokinen is a scholar, a musician, an advocate, and a jokester. Part of the Beat FSHD!-Combo, you might recognize him from the band’s recent World FSHD rock anthem and as the wearer of a hat bearing his ask of physicians and researchers “Feel free to beat FSHD.” In this episode of FSHD Straight Talk, Jokinen joins Tim for a discussion about building FSHD community more globally and the power of positivity in persevering as FSHD progresses. From walking his dog to studying languages to rocking out, Rami persists. Listen to the viral “Beat FSHD anthem here: https://www.youtube.com/watch?v=_L49Pilmcbo 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!
Aug 11

Rethinking Fashion Through FSHD

Fashion designer Vasiliki “Vas” Charitonos believes adaptive clothing can be both accessible and stylish. Her approach is informed by her own experience with FSHD. As a teenager, Vas began adapting her clothes when getting dressed became more difficult, a challenge familiar to many people living with FSHD. In this episode of FSHD Straight Talk, Vas and her partner, Robert, join Tim to talk about her work in fashion and their life together. Vas also shares why she kept her diagnosis private for years and what changed when she decided to start talking about FSHD publicly. Shop Vas’s designs at www.vasilikiofficial.com and follow her on Instagram at @vasilikicharitonos.
Jul 28

Loving Through Live with FSHD - A Conversation with Kathy Chase

Kathy Chase has a sense of humor - about life and her husband Larry’s FSHD diagnosis. In this episode, Kathy joins Tim for a candid conversation about how FSHD has affected and strengthened her marriage. Kathy’s blogs are eloquent as is she as she provides insight into her experience as a spouse, carepartner, and someone with a deep belief in “the beauty that can still be found in difficult seasons.” FSHD doesn’t have to mean the end; it can also signal so many new beginnings. Read Kathy’s work and follow her blog: https://kathychase2.substack.com/subscribe?next=https%3A%2F%2Fkathychase2.substack.com%2F&just_signed_up=true 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!
Jul 14

Strive to Inspire with Chris Carrino

This week, Chris Carrino returns to FSHD Straight Talk for a conversation about inspiration. Recently awarded the Curty Gowdy Media Award and entered into the Naismith Basketball Hall of Fame, Carrino discusses feeling humbled and reacting to how sports announcing has both inspired him and allowed him to inspire others. 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!

5

out of 5

3 Ratings

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.

Creator

FSHD Straight Talk
Years Active

2022 - 2026
Episodes

194
Rating

Explicit
Show Website

FSHD Straight Talk with Tim Hollenback

Non-Profit

Non-Profit

Updated Daily