My FSHD

05/23/2026

I am sharing this for anyone suffering from FSHD or any disability and caregivers. I have followed Tony and Jenny’s journey and unfortunately Tony is no longer with us, their story is worth a listen. You also may go back and follow their journey.

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

01/13/2024

We are planning another video segment this time on the secondary related effects of FSHD, such a bipolar (believe by some to be connected), broken bones from falls, lower levels of bone density, breathing issues, hearing loss, vision complications, joint damage, pain, etc and what if any mitigating efforts you are taking or have taken to deal with them.

I am hoping some of you will post here what conditions are you experiencing beyond simply FSHD so we can present these to a broader audience.

Feel free to PM me too. We expect to bring doing a presentation online in mid February.

Thanks.

11/20/2023

Join us tonight.

8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us as June Kinosh*ta, Senior Director of Research & Education, answers your questions about... Read More »

09/18/2023

https://m.youtube.com/watch?v=kkBDyZheP6s

Dr. Rabi Tawil is one of three driving forces for creating the circumstances of Facioscapulohumeral dystrophy (FSHD) research for understanding of the diseas...