Rob Stemple, musician and writer, joins host Tim Hollenback for a candid conversation about FSHD and family. In this episode, Tim and Rob discuss the importance of family support, home and other accommodations, and how using writing, music, and other art forms can create a powerful form of emotional release. Tune in to hear all about Rob's long history as a musician, from his start in polka bands at age 13 through his recent turn as a musician at nursing homes and family events. On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Holl ..read more

In this episode of FSHD Straight Talk, host Tim Hollenback talks with George Pollock, longtime member of the FSHD Society Board of Directors and a powerful advocate FSHD treatments. Join Tim and George for a conversation about the healing power of movement and to hear more about George’s passion for endurance athletics and upcoming participation in the Triple Bypass Race. As George said during his interview, “You could be gardening, it doesn't matter, as long as you're moving...to the best of your abilities.” On the second and fourth Tuesday of every month, listen for a new episode of FSHD Str ..read more

In this episode of FSHD Straight Talk, Tim interviews Chris Carrino, the play-by-play announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD! Chris talks about his career starting as a part-time producer to becoming a prominent voice in sports broadcasting. He also discusses life with FSHD and advocacy work, including a recent trip to Capitol Hill. This is a slam dunk interview you don’t want to miss!    If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media. On the second and fourt ..read more

It’s World FSHD Day! To celebrate today, Tim Hollenback, FSHD Straight Talk host, talks with: Ricardo Gerpe from FSHD Spain; Chelsea Moeller from the FSHD Society; Rick & Terry Colella from Friends of FSH Research; Jennifer Cherniwchan or the Alberta Chapter; Chris Carrino, announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD; and volunteer Priscilla Sharun.  For more information about World FSHD, please visit the FSHD Society website.  If you would like to share your experiences living with FSHD, please reach out via email or send us a message o ..read more

 When a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host Tim Hollenback and guest Priscilla Sharun discuss their exercise routines, building strength through consistency, and the importance of committing to your health. For Priscilla, regular exercise, healthy eating, mindfulness, and an array of supplements have increased her strength and flexibility, allowing her to be healthier, happier, and more present with her family. Catch the entire episode for tips, tricks ..read more

In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of FSHD progression with Callum Arras. Bridging their nearly 20 year age gap, Hollenback and Arras find common ground in their belief that self-knowledge, willpower, and determination helps them maintain activities, mobility, and their sense of self. Conversational yet sincere, Hollenback and Arras' sharing of experiences and feelings is not an episode to miss. On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback ..read more

In today’s episode of FSHD Straight Talk, Madison Ferris dives into her latest project, the off-Broadway romantic comedy “All of Me,” which starts today! Madison shares her experiences of bringing diversity to the stage as the first wheelchair user to lead on Broadway. Catch her thoughts on how roles like hers can shift perceptions and open doors in the arts. You can see Madison live from April 23rd to June 16th in “All of Me.” Tickets available at https://thenewgroup.org/production/all-of-me ..read more

In this episode, FSHD Straight Talk host Tim Hollenback speaks with Trish about life during and after diagnosis. In this candid conversation Trish (last name withheld for privacy) and Tim discuss the impact of physical therapy, the frustrations that PTs often know or do more than PCPs, and additional intricacies and intimacies of living with FSHD. As an added bonus, Trish delivers Tim's favorite podcast line EVER. You don't want to miss this honesty, funny, vulnerable conversation ..read more

Tim is joined by Lonwabo Nene, scriptwriter, filmmaker, and FSHD advocate from South Africa. If you've seen his engaging sessions on Feeling Fit (https://youtu.be/NfskqqQx7Rg), you already know Lonwabo has invaluable insights to share! In this episode, he talks about his journey with FSHD, from the struggle for diagnosis to actively managing his symptoms through fitness. Listen for Lonwabo’s practical and positive approach to tackling FSHD’s daily challenges ..read more

We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home awards!) in the festival circuit for its moving story as well as groundbreaking representation of disability. Danny, the film’s star, is an actor living with FSHD, and the story is inspired by his life and close friendship with Shane, its director. The FSHD Community has been eagerly awaiting more details about this exciting movie, and you don’t want to miss this episode!  You may notice that FSHD Radio has had a bit of a make ..read more