The first World FSHD Day was celebrated on June 20, 2016. Three years earlier, brothers Marco and Sandro Biviano traveled from their home on Lipari, Italy to Rome to advocate for better access to medical care. After 700 days of demonstrations, the Biviano brothers convinced the Italian government to fund a telemedicine system and home care for Italian citizens living with FSHD. In addition, the Italian government designated June 20th FSHD Day. This date honors the birthday of the Biviano siblings’ mother.
Fabiola Bertinotti (FSHD Europe) shared the Biviano’s’ story during the 2015 FSHD Champions Summit and the idea for World FSHD Day was born. You can read the entire story in this blog post: World FSHD Day backstory | FSHD Society.
This year more than 10 Italian cities illuminated cities’ monuments in orange to create awareness for FSHD!
https://www.instagram.com/reel/C8cwV62PaTd/?igsh=MXdqOGZrNnJseGhnZw==
https://comunicazione.camera.it/archivio-prima-pagina/19-41134
