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

In this episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares her inspiring journey into Universal Design as a means to create flexible and age-friendly living spaces, driven by her personal experience with FSHD.  Through the lens of her own experiences and involvement with organizations like SAIL and TZ of Madison, WI, Jane discusses the importance of designing spaces that enhance well-being and independence, regardless of age or physical challenges. Listen to hear how thoughtful design can help ..read more

Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to receiving mobility devices and assistance, and accessibility in nature and outdoor environments. Share your thoughts, or post questions in the comments section. You can also listen to the episode on your favorite podcast app. Subscribe to make sure you never miss an episode! Interested in being on the show in 2024, send Tim an email at FSHDRadio@FSHDSociety.Org. Give Marisa a follow! Youtube/Instag ..read more

Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. A new video podcast is released the 2nd Tuesday of every month on YouTube and Facebook. Share your thoughts, or post questions in the comments section. You can also listen to the episode ..read more

In this episode, join Tim as we wrap up the year with a profound discussion on the future of FSHD treatment and advocacy. Guest Ken Kahtava, Chief Business Officer of the FSHD Society, delves into Project Mercury, a groundbreaking initiative aiming to revolutionize access to therapies, improve clinical trials, and engage the FSHD community globally. From disease progression modeling to the collective power of global patient registries, this episode highlights the innovative strategies paving the way for a hopeful future in FSHD treatment ..read more

In this episode, Tim chats with Michael Osborne, a fellow Milwaukeean and baseball coach living with FSHD. Michael and Tim share the story of how they met by chance on the baseball field and what it means to come across another person who understands the experience of having FSHD. Michael, a dad of three and business owner, also shares his diagnosis story and the impact FSHD has had within his family ..read more

FSHD is in the national spotlight! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The NFL player has chosen FSHD Global, our Australian counterpart and fellow Project Mercury member, as his nominated charity for the “My Cause My Cleats” campaign, which encourages NFL players to support meaningful causes through customized cleats. His designer cleats will be auctioned by the NFL next week, with all proceeds benefiting FSHD Global. Don’t miss the Seahawks vs. Dallas Cowboys game on Thursday ..read more