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Faces of FD/MAS: William’s Story

Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary.

June is Pride month, and we’re sharing the story of William Romero, a newly minted Vanderbilt graduate and drag performer. No one is ever just their diagnosis, all of us in the FD/MAS community have many dreams, accomplishments, and challenges beyond our medical records. When William performs as Daisy Bility, he celebrates and highlights both his queer and his disabled identities. His dedication to rare disease and disability rights advocacy over the years has been remarkable and his presence infuses any room he enters with joy. There is no better way to celebrate the intersectionality of our community than to share his story.

William participated in the Faces of FD/MAS project while attending the 2023 FD/MAS Community Conference.

We’re honored to share his story

“There’s two major labels that define me and that’s disabled and gay. Coming out is a journey that not just queer people experience, it’s something that disabled people experience too. It’s a hard thing to do.”

FD/MAS is a complicated and rare disease. Those diagnosed with the disease and their caregivers often feel overwhelmed and alone. Faces of FD/MAS hopes to give comfort and community to those in the FD/MAS community by demonstrating that they are not alone and that those with FD/MAS can lead full, vibrant, and successful lives.

The project simultaneously illustrates the great need for improved understanding and treatment outcomes and the urgency for research and quality-of-life advancements.

The project simultaneously illustrates the great need for improved understanding and treatment outcomes and the urgency for research and quality-of-life advancements.

To join us and support our mission, give today.