Faces of FD/MAS – Teddy’s Story
When Teddy Adams was just six years old, he received a life-altering diagnosis: fibrous dysplasia, McCune-Albright syndrome (FD/MAS). He was told his life would be forever limited – no biking, no running. But worst of all, no one explained why.
For years, Teddy lived with unanswered questions and the constant threat of uninformed care. He endured countless surgeries and procedures, knowing that a provider without specialized knowledge could cause irreparable harm. It wasn’t until adulthood that he found the FD/MAS Alliance, finally connecting with experts who could provide the answers and support he desperately needed.
We’re honored to share his story
If you’re reading this, you likely understand the devastating impact a rare diagnosis can have. You know that evidence-based treatments are not just critical for immediate health, but for a lifetime of well-being. And like us, you believe that patients must be at the forefront of medical advancement.
The FD/MAS community needs you.
We’re closer than ever to better treatments and care, but we can’t get there without your help. The FD/MAS Alliance works every day to improve the lives of people like Teddy.
To take the next big step, we need 100 people (and more!) to step up by June 15. Your support matters. Will you join our team and be counted?
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.
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.