THE FIBROUS DYSPLASIA FOUNDATION

RESEARCH PROGRAMS: -IN 2025, TEAM FD/MAS AWARDED TWO RESEARCH GRANTS TOTALING OVER 120,000 TO ADVANCE FD/MAS SPECIFIC RESEARCH: --DR. ARIANE ZAMARIOLI OF RIBEIRAO PRETO MEDICAL SCHOOL RECEIVED 40,234.00 FOR HER PROJECT ELUCIDATING A LINK BETWEEN MICROFRACTURES AND FIBROUS DYSPLASIA BONE PAIN IN MICE. --DR. J. SILVIO GUTKIND OF THE UNIVERSITY OF CALIFORNIA, SAN DIEGO, RECEIVED 80,468.00 FOR HIS PROJECT TARGETING GNAS-DRIVEN PATHWAY FOR PRECISION THERAPY OF FIBROUS DYSPLASIA. -HOSTED TWO RESEARCH UPDATES --DR. MARC WEIN OF MASS GENERAL HOSPITAL SHARED FINDINGS FROM HIS PRMRP- FUNDED PROJECT, FOCUSING ON THERAPEUTIC CONCEPTS THAT HAVE EMERGED FROM HIS BASIC SCIENCE STUDIES. --IN JUNE, ALISON BOYCE SHARED RESEARCH UPDATES FROM HER PHASE TWO CLINICAL TRIAL OF BUROSUMAB, WHICH HELPS REGULATE PHOSPHATE LEVELS -SUPPORT AND MAINTENANCE OF THE FD/MAS PATIENT REGISTRY, AN IRB-APPROVED STUDY.

ADVOCACY PROGRAMS: -ALLIANCE ADVOCATES SECURED ANOTHER YEAR OF ACCESS TO THE PEER-REVIEWED MEDICAL RESEARCH PROGRAM (PRMRP) AND 150 MILLION OF POSSIBLE RESEARCH FUNDS -ADRIENNE MCBRIDE SAT ON THE GLOBAL GENES CORPORATE ALLIANCE COMMITTEE THAT DEVELOPED A NEW WHITE PAPER, "EARLY AND OFTEN: REIMAGINING PATIENT COMMUNITY ENGAGEMENT TO IMPROVE CLINICAL TRIALS FEASIBILITY," WHICH SHOWS THE TRANSFORMATIVE ROLE OF PATIENT ADVOCACY ORGANIZATIONS IN RARE DISEASE DRUG DEVELOPMENT. -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 WERE RELEASED THROUGHOUT 2024 AND 2025.