While each patient’s experience is unique, researchers make scientific gains by making connections between FD/MAS and other medical conditions related to bone health. This is why FDF and prominent FD/MAS researchers attend the annual American Society for Bone and Mineral Research (ASBMR) meeting each September, and why FDF strives to bring researchers from different backgrounds together in dialogue about FD/MAS.
This year’s meeting was held in Montreal, Canada, and FDF was represented by Research Programs Manager Teneasha Washington. “ASBMR was a great opportunity for me to meet researchers, and advance conversations about potential future partnerships and studies,” said Teneasha, who connected with many renowned bone researchers including Drs. Kassim Javaid, Alison Boyce, Michael Collins, Roland Chapurlat, Maria Luisa Brandi, Pablo Florenzano Valdes, Natasha Appelman-Dijkstra, and Edward Hsiao. “In particular, I had a lot of great, productive meetings about the FD/MAS Patient Registry,” Teneasha added, “There are so many ways for researchers to use this incredible resource to make researching FD/MAS more rapid and efficient.”
FDF was a sponsor of several events at this year’s ASBMR annual meeting. FDF provided financial support for the Mechanistic and Therapeutic Advances in Rare Skeletal Diseases pre-meeting, the Adult Bone and Mineral Working Group Dinner, and a working dinner of the FD/MAS International Consortium. These different sponsorships helped FD/MAS researchers reach doctors at major clinical centers with new clinical care information, created additional visibility and awareness of FD/MAS among bone researchers, and enabled disease-specific projects like the FD/MAS Clinical Pathway to move forward.
In addition to meeting prominent researchers, FDF also connected with other patient groups including Charlene Waldman, Director of the Rare Bone Disease Alliance and Sarah Ziegler, the National Director of Research for MHE Research Foundation. “Our groups share the objective of understanding bone mineralization in order to find better solutions for rare bone diseases,” explained Teneasha. FDF will continue to connect with researchers, patient advocates, and industry partners for any promising collaboration that could bring better insight to how FD/MAS develops and how the disease could be slowed and eventually stopped.
A highlight of the weekend came when Dr. Michael Collins of the NIH, who serves as the Chair of FDF’s Medical Advisory Council received the Boy Frame Award. This award honors excellence in clinical care. Many in the FD/MAS community will be familiar with Dr. Collins’ commitment and compassion to patient-centered care from his work at the NIH’s FD/MAS Natural History Study. “Dr. Collins has taught FDF and our community so much about this rare disease,” said Portero, “It is not uncommon for him to respond to questions from the FDF after hours or over the weekend. It’s amazing how often he’s also playing that role with other doctors too. He constantly lends his time and wisdom to other physicians, always reminding them that the best marker of success is patient quality of life, not some single lab value.” This recognition is incredibly well deserved. FDF is honored to work so closely with a physician of Dr. Collins’ caliber to serve the FD/MAS community.