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 specialist, discussed his work on writing a book about rare disease care, disability rights advocacy, and small ways we can create massive change for loved ones living with FSHD.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
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.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: [email protected]
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!