NIDCR and the FD/MAS Alliance: A Partnership that Endures
Drs. Ibrahim Elbashir, Jonathan Freeman, Vivian Szymczuk, Zachary Michel, Vardit Kram, Luis F de Castro, and Alison Boyce with Anne Corvelle from the NIDCR and Adrienne McBride of FD/MAS Alliance
“When I speak about the success of the NIDCR’s natural history study of FD/MAS, I always credit the support we’ve had from FD/MAS Alliance,” says Dr. Alison Boyce, Chief Metabolic Bone Disorders Unit with the National Institute of Dental and Craniofacial Research as well as Chair of FD/MAS Alliance’s Medical Advisory Council. Dr. Boyce is known for answering off-hour phone calls and responding to late-night questions with warmth and clarity. “With this disease, I feel confident we can improve patient outcomes,” says Dr. Boyce. “It’s so rewarding to care for these patients as they grow, knowing we can help them improve their quality of life.”
Dr. Boyce oversees the NIH natural history study of FD/MAS, which recently celebrated 25 years of research. When the NIH study began, there was no formalized group. In 2004, led by Charles Harles, some of the original participants in the NIH study formalized FD/MAS Alliance, then called Fibrous Dysplasia Foundation. They relied on NIH experts to support educational programs and scientific research initiatives. Through that partnership, Dr. Boyce has volunteered countless hours, leading webinars, organizing conferences, and even helping to design the FD/MAS Patient Registry. “It’s gratifying to give back to this community and to support patients and caregivers as they advance their priorities.”
In the last two years, FD/MAS research has increased with more than 200 recent publications, and Dr. Boyce has been among the most prolific researchers in the field. She’s currently closing out two clinical studies, one on denosumab and another on burosumab. “Both of these drugs have a great potential for improving care,” said Dr. Boyce, “But there are still barriers to be worked out, including safe dosages and opening patient access through insurance approvals.”
The excitement in the FD/MAS community over Dr. Boyce’s work is palpable, and FD/MAS Alliance continues to collaborate closely with Dr. Boyce to advance patient priorities. “When there’s a strong patient advocacy organization, and when researchers collaborate with the community, we can strategize to give ourselves the best possible chance of moving these findings from the lab to standard and accessible patient care,” explains Dr. Boyce, “It’s a friendship that’s beyond just appreciating each other, together, we can go much farther.”
Read more about FD/MAS Alliance’s work in the FY 2024 Annual Report