In this episode of FSHD Straight Talk, Tim speaks with Wang Wen, a passionate advocate and prolific storyteller living in China. Following his long road to diagnosis, Wang has sprung into action leading support groups, creating educational documentaries, and using his social media platforms to raise awareness about FSHD. In 2025, Wang even hopes to write a book collecting stories from Chinese FSHers! Tune in to hear how Wang uses storytelling and activism to build awareness and push back against isolation.
Thank you to Wang for reaching out to be on the podcast! 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 fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
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