FSHD Radio Podcast
1) 153: More Laughter, More Love: Reflections on an Inter-Abled Relationship with Leah & Joe Lee
Loving someone with FSHD means loving someone through constant change, a path that Leah & Joe have traveled together since they met in 8th grade. Despite coming from a family with FSHD, Joe faced a lo...Show More
2) 152: A Career Retrospective: Over a Decade of Care, Advocacy & Writing with June Kinoshita
In honor of her retirement, join us for a final interview with June Kinoshita. Not only was June the first podcast guest, she served the FSHD Community with grace, vision, and unrelenting passion for ...Show More
3) 151: A Parent’s Perspective: FSHD History, Advancements & What We Can Do Now
This week, Dr. Ray Huml joined host Tim Hollenback for a conversation that dives deep into FSHD research, history, and treatment development. Dr. Huml, a dedicated caregiver, parent, and rare disease ...Show More
4) 150: The Power of Vulnerability with Aidan Mace, FSHD Straight Talk with Tim Hollenback
In this episode, Tim speaks with Aidan Mace about the power of vulnerability. Diagnosed within the last 4 months, Mace shares his diagnosis story – paging Dr. Google! – experiences with grief, and how...Show More
5) 149: World FSHD Day Special - Supercut
It’s World FSHD Day, a global day to raise awareness about FSH Muscular Dystrophy, it’s symptoms, and our fight for a cure. Join Tim for a special edition episode: our first ever SUPERCUT. In addition...Show More
6) 148: Rolling Around Fundraising: The Story & Perseverance of the Ahlers Family
Join Tim for a conversation with siblings Michele and Michael Ahlers about family, fundraising, and FSHD. Listen as Michael recounts Michele giving him the “FSHD frisk” and Michele shares her complica...Show More
7) 147: Hopeful Science: an Interview with the Myoterra Team
You might have heard the exciting news: an undergraduate research team led by Heloise Hoffmann received $50,000 to fund their research into a novel treatment for FSHD. Join Tim for a conversation with...Show More
8) 146: Fiercely an Advocate: Living with Early-onset FSHD
Join Tim for a conversation with Tatiana Garcia, a college student in California. Tim & Tatiana talk misdiagnosis, the importance of family and community support, everyday adaptations, and how to beco...Show More
9) 145: Powering the Path Forward with Erin Saxon
Join Tim for a conversation with Erin Saxon, Marketing Director, about a new look for the FSHD Society. From the empathy and intention behind brand colors to more cohesive messaging, Tim and Erin cove...Show More
10) 144: Growth Through Coaching, a Solo Episode of FSHD Straight Talk with Tim Hollenback
In this rare solo episode, hear host Tim Hollenback’s FSHD story and his personal philosophy on coaching. Adapted from his 2025 VLS story, don’t miss this opportunity to learn about Tim, the history o...Show More