Tyler Healy: FD/MAS Champion
Tyler Healy was seven years old when he broke his femur while playing soccer with his twin brother and dear family friends in their backyard. Doctors discovered he had fibrous dysplasia, McCune-Albright syndrome (FD/MAS), a rare and often debilitating disease of the bone and endocrine system.
The diagnosis was a shock to the Healy family. They were thrust into a world of rare disease, filled with uncertainty and fear. “I remember sitting in that wheelchair and the doctor coming in to give us the news,” recalls Tyler, “they told me I might not be able to run or play any sports.” It was a devastating blow for an active kid used to roughhousing with his brothers and friends.
Thankfully, those doctors connected the Healys to the FD/MAS Alliance.
Tyler’s family attended the 2017 FD/MAS Alliance conference. The experience was overwhelming—a flood of information and possible obstacles. But instead of being paralyzed by fear, Sarah and Justin Healy took it as a call to action.
Inspired by the conference, the Healys became passionate advocates for the FD/MAS community. The family has become the top Team FD/MAS fundraiser, raising over $100,000+ for research. Sarah and Justin have taken their advocacy to the next level by volunteering as FD/MAS Alliance Board Directors and collaborating with the Alliance to push for FD/MAS priorities with elected representatives. Sarah also served as a consumer reviewer for a Department of Defense research initiative that could advance FD/MAS research.
The Healys are motivated by love for Tyler and a determination to make things better for all people diagnosed with FD/MAS. As Justin poignantly says, “We know our children are watching us try to make a difference—and THAT matters.”
Initially, Tyler struggled, feeling thrust into the rare disease community against his will.
“For years, I was super anxious about my health and worried that I’d break another bone,” Tyler shares, “I knew I was relatively lucky, but it was hard to watch my brothers and friends running around and competing without me.”
Tyler turned to swimming and golf as a way to stay active. In 2021, that same family friend invited him to participate in a challenging ½ mile open water swim as part of a lifeguard competition. He recalls that first race: “That day, there were three-foot waves, and the tide was just ripping.” The conditions were unpredictable and, at times, dangerous. The rush of that competition had him hooked.
This newfound passion made him reflect on his younger self—the boy who felt lost and isolated after his diagnosis. He realized how helpful it would have been to have someone there to say, “It can get better.” This realization drove him to become more involved with the FD/MAS Alliance.
In 2023, Tyler attended the FD/MAS Alliance Community Conference and contacted the Patient Advisory Council soon afterward. In 2024, he volunteered to lead a community discussion on strategies for staying active after diagnosis.“Organizing that event with the Patient Advisory Council was the first time I had really spoken with other people diagnosed with FD/MAS. It was amazing to talk with others who really understood.” Tyler recalls.
That Spring he joined the Patient Advisory Council and volunteered as a summer intern, where he worked to expand FD/MAS Alliance’s research network. He’s become an advocate in his own right, and his advice to others in the FD/MAS community is simple: get involved.
As Tyler thought about how to give back, he saw the FD/MAS Alliance as the key lifeline for those in the FD/MAS community. Looking to the future, Tyler envisions the FD/MAS Alliance as the cornerstone that connects people globally, using the power of social media and other tools to reach those who need support. Everyone deserves that sense of community, answers to their basic questions, and hope for improved treatment options. The Alliance’s mission and impact resonate deeply with Tyler as he strives to make a positive impact not just for himself but for the entire FD/MAS community. Through his involvement, Tyler feels he can give back and help others who may be at the beginning of their journey with FD/MAS.