FSHD Straight Talk with Tim Hollenback

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: [email protected] 

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! 

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: [email protected]

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! 

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: [email protected] 

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! 

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: [email protected] 

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! 

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: [email protected]

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! 

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: [email protected]

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, 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: [email protected] 

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! 

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! 

-------------------------------------------------------------------------------------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/

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! 

-------------------------------------------------------------------------------------🍊🧡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: [email protected]

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: [email protected] 

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!