FSHD Straight Talk with Tim Hollenback

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] 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! 

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.

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=trueNo 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] 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!  Facebook: @FSHDUK Instagram: @fshd.uk X: @FSHDUKgroup  -------------------------------------------------------------------------------------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/ Facebook: @FSHDCanadaFoundation Instagram: @fshdcanada 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!  FSHD Society Blog Learn more about everything happening across the globe in 2026: World FSHD Alliance Live Blog FSHD Society Live Blog -------------------------------------------------------------------------------------🍊🧡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] 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! 

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: [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! 

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: [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!