64: Talking about early-onset of FSHD

FSHD Straight Talk with Tim Hollenback
19/10/2021 1h 5min Episodio 64
64: Talking about early-onset of FSHD

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Episode Synopsis

This month’s guests are Ally Roets and her son, Sam Ray. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of FSHD in early childhood. This form of FSHD brings unique challenges. We seek to connect early-onset families around the world through this chapter so that they can share their knowledge and advocate for research and treatments.

More episodes of the podcast FSHD Straight Talk with Tim Hollenback

159: Do Hard Things: Movement is Medicine & Riding to Raise Awareness about Early Onset FSHD with George Pollock & Ally Roets 11/11/2025
158: Always a Work in Progress: Growth through Movement, Connection, and Adapation with Elissa 28/10/2025
157: Expanded Access Crash Course with Ally Roets and Dr. Michelle Mellion 14/10/2025
156: Lived Experience Matters: The Impact of Storytelling in Rare Disease Communities & Advocacy with Michael King 23/09/2025
155: 2025 Walk & Roll Special 20/09/2025
154: Don’t Let It Get to You: Living & Growing with FSHD with Kendra Vaalemon 26/08/2025
153: More Laughter, More Love: Reflections on an Inter-Abled Relationship with Leah & Joe Lee 12/08/2025
152: A Career Retrospective: Over a Decade of Care, Advocacy & Writing with June Kinoshita 22/07/2025
151: A Parent’s Perspective: FSHD History, Advancements & What We Can Do Now 08/07/2025
150: The Power of Vulnerability with Aidan Mace, FSHD Straight Talk with Tim Hollenback 24/06/2025
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