Share Your FSHD Story

Your story has the power to drive change.

By sharing your experience, you help bring visibility to FSHD, strengthen advocacy efforts, and connect with others who understand.

Every journey is different, and every voice matters. Whether you want to highlight a challenge, a triumph, or simply what life with FSHD looks like for you, your perspective can make a difference.

Your story may be featured in advocacy campaigns, on our website, in fundraising appeals, or in other materials that help power the path forward.

Share Your Story