Faces of FD/MAS: Nikki’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.

In celebration of Rare Disease Day and FD/MAS Global Awareness Week, we’re honored to share Nikki’s Story. Nikki is a Board Director and member of the Patient Advisory Council. Her path to diagnosis was not easy, and he determination to make her experience a call to action is inspiring. Nikki participated in the Faces of FD/MAS project while attending the 2023 FD/MAS Community Conference.

We’re honored to share her story for Rare Disease Day

“This is part of me, it’s not all of me […] If I can contribute to research, maybe I can make things better for future generations, and maybe one day we’ll have a cure.” -Nikki Deeley

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.

To join us and support our mission, give today.