Any patient who participates in the NIH Natural History Study is familiar with the warmth and kindness of Dr. Alison Boyce, one of the study’s lead investigators. Dr. Boyce’s diligence and compassion have helped so many patients. At any hour of the day, the 200 patients enrolled in the NIH Natural History know that they can turn to Dr. Boyce in in moments of fear or uncertainty. The FD/MAS patient community is so grateful for the time that Dr. Boyce gives, and honored that commitment with the 2017 Constellation Award.
Before Dr. Boyce was a leading clinical expert in FD/MAS, she was a self-possessed girl from the small town of Opal, Virginia with an affinity for science. “I’ve always known that I wanted to work with people, in some sort of service field where I could help them,” said Dr. Boyce, “and since I was fascinated by science, medicine felt like a natural fit.” She pursued a career as a pediatrician, but realized she liked specializing in a more narrow topic where she could hone an expertise to help her patients. This lead her to endocrinology and the skeletal system.
“Our bones are these structures that help us move through the world. The skeletal system affects our whole life cycle,” explained Dr. Boyce. This is also part of the reason that endocrinologists often see patients with chronic conditions. “I really liked caring for chronic patients because I got to see patients over a long period of time. That way, you really get to know them.”
As a chronic, rare, skeletal disease, FD/MAS was a particularly rewarding area for Dr. Boyce. “With this disease, I feel really confident we can improve patient outcomes. When we don’t treat the endocrine issues, we see the bone disease get worse. It’s so rewarding to care for these patients as they grow when we can really help them improve their quality of life.”
Of course, like many patients, Dr. Boyce has good days and bad days. “It’s really frustrating that we don’t have better treatments available, especially for the little kids that we see,” said Dr. Boyce, “We’ve made a lot of progress, and figured out what we should not do in terms of surgery and physical therapy, but I wish there was a way to slow or stop the bone lesions progression.”
Dr. Boyce is ever the optimist, and always interested in learning more. In addition to her work, she’s also an avid reader with a goal of reading 50 books a year. She loves to spend time with her husband Peter, her two young children Liam (9 years) and Anne-Marie (7 years), and their hound dog, Tonks. Somehow, between it all, she always finds time to collaborate with and guide the FDF. “It’s been great to work more closely with the FDF over the last two years,” said Dr. Boyce, “medicine can sometimes operate in a silo all by itself, and I’ve come to see that we’re a piece of the larger puzzle of all these actions that are working to make progress happen.”
Indeed, Dr. Boyce certainly is a piece of the puzzle in the fight to #CureFDMAS. Dr. Boyce has already published nearly 30 research papers on FD/MAS, making her one of the most prolific and well-respected researchers in the field. She is also one of the founding, leading voices in the new international consortium of FD/MAS researchers.
Dr. Boyce’s accomplishments have touched so many lives in our community. So many among us have stories of Dr. Boyce taking their phone calls over the weekend, offering them advice even when their young patients were not old enough to be seen as part of her study, and responding to emotional emails. Those who do not, have often been touched by her work on important papers, or the fibrousdysplasia.org webpages she has written or reviewed.
We are honored to have her as a champion in the fight against FD/MAS. She is one of the “stars,” giving light in a sometimes dark night sky. She is a stable, available resource that gives us direction. Her star, when connected with other stars, can create a bigger picture. For these reasons and more, the Board of Directors of the Fibrous Dysplasia Foundation were proud to present Dr. Alison Boyce the Constellation Award.