FSHD Straight Talk with Tim Hollenback
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Recent Episodes
168: Against the Current: a Conversation with Lexi and Kate
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…
170: The Calm in the Storm: Veronika Hahn
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…
171: Tiny Desk Concert with Gracie Caggiano
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…
169: Set Your Face Like Flint, but Keep Your Masculinity Soft, Reflections with Ryan Olson
This week, Ryan Olson, a mechanic turned web designer and programmer, joins Tim for a nuanced discussion about life after diagnosis, finding community support, and maintaining your masculinity as…
167: Introducing the High 5 Challenge with Jack Gerblick and Nick & Martha Logan
Introducing the High 5 Challenge, an awareness and fundraising campaign created and led by folks living with facioscapulohumeral muscular dystrophy (FSHD). The campaign seeks to increase awareness of…
166: A Lifetime on the Course: Maintaining His Passion Through Adaptive Golf with Justin Vanlanduit
Justin aka TurfTank returns to the podcast for an engaging conversation about adaptive sports and maintaining your athletic passions as FSHD progresses. A life-long golfer and former Course…
165: Blazing a Trail: an Artful Vision for the Future of FSHD Community Support
Almost 1 year to date, Art Abrams went from podcast listener to podcast guest, BetterLife FSHD Ambassador, and Leader of the new Iowa Chapter. In this episode, Tim and Art discuss life after…
164: Keep Rolling: The Red Scooter Diaries Remastered
This week we’re sharing a remastered version of an episode from 2022 featuring Claire Szabo-Casella, author of The Red Scooter Diaries and start of the short documentary film of the same name. During…
163: We Aren't Less Than, We're Doing It Different with Jessica Ryley Hammond
Tim kicks off 2026 by interviewing Jessica Ryley Hammond, a counselor running for Harford County Council. A lifelong athlete and horse-rider, Jessica was inspired to run for County Council because…
162: AMA: Answering Your Questions About FSHD
In our first ever Ask Me Anything (AMA) episode, Tim hosts a panel of FSHD experts to answer questions submitted by you! Amanda Hill, Dr. Lucienne Ronco, and Dr. Michelle Mellion answer questions…
161: Pilates for FSHD, Rehab & Muscle Health: an Interview with Carme Farré, CEO/Founder of FaceToned
Join Tim for a fascinating episode with Carme Farré, CEO/Founder of FaceToned. From a young age, Carme found herself fascinated with yoga, pilates, and holitics health and wellness practice. She…
160: Adapting the Best We Can with Quinn Wilton
In this week’s episode, Tim speaks with Quinn Wilton, a social worker and DIY fundraiser, about her life, career trajectory, and growing community. While Quinn does give away some of the secrets to a…
159: Do Hard Things: Movement is Medicine & Riding to Raise Awareness about Early Onset FSHD with George Pollock & Ally Roets
In this episode, we have two return guests: George Pollock, Team FSHD Cycling, and Ally Roets, Parents’ Roundtable Leadership. George and Ally join Tim to discuss their participation in the upcoming…
158: Always a Work in Progress: Growth through Movement, Connection, and Adapation with Elissa
Join Tim and special guest Elissa for a deep conversation covering topics including: How FSHD can affect post-partum healing Finding a physical therapist who explains exercise in your “language,”…
157: Expanded Access Crash Course with Ally Roets and Dr. Michelle Mellion
Join Tim, Ally, and Michelle for a crash course into expanded access. Expanded access allows folks living with rare diseases to request access to experimental drugs (those in clinical trials) even if…
156: Lived Experience Matters: The Impact of Storytelling in Rare Disease Communities & Advocacy with Michael King
Join Tim for an interview with Michael King, return guest and leader of the North Carolina Chapter and Walk & Roll. In this episode, King discusses the power of sharing your FSHD story to create…
155: 2025 Walk & Roll Special
Join us for the 2025 Walk & Roll special episode of FSHD Straight Talk with Tim Hollenback. This year’s episode features: Amy Bekier, San Diego; Ian Barr, Long Island, NY; Mollie Garrett,…
154: Don’t Let It Get to You: Living & Growing with FSHD with Kendra Vaalemon
This week, Tim spoke with Kendra, an Idaho resident with a family history of FSHD. Diagnosed at age 9, Kendra knew she had FSHD as early as 6 as her symptoms resembled those of her older brother.…
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…
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…
Frequently Asked Questions
FSHD Straight Talk with Tim Hollenback has published 185 episodes since January 2019, covering topics in Health & Fitness, Science.
FSHD Straight Talk with Tim Hollenback is currently highly active with new episodes every 2 weeks. Average episode length is 55m.
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