Fibrous Dysplasia Foundation Inc

THE FIBROUS DYSPLASIA FOUNDATION SERVES PEOPLE AFFECTED WITH FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT SYNDROME THROUGH PROGRAMS OF RESEARCH, EDUCATION, AWARENESS AND SUPPORT.

RESEARCH GRANTS PROGRAM: IN PARTNERSHIP WITH THE UPENN ORPHAN DISEASE CENTER AND THE MILLION DOLLAR BIKE RIDE (MDBR) PROGRAM, THE FD/MAS ALLIANCE FUNDED THREE RESEARCH PROJECTS IN 2021. TITLE: UNRAVELING THE ROLE OF ADIPONECTIN-EXPRESSING BONE MARROW STROMAL CELLS IN THE CELLULAR PATHOGENESIS OF FIBROUS DYSPLASIA INSTITUTION: SAPIENZA UNIVERSITY OF ROME TITLE: STRUCTURE ACTIVITY RELATIONSHIP STUDIES OF COMPOUNDS TO TREAT FD/MAS INSTITUTION: UNIVERSITY OF CALIFORNIA DAVIS TITLE: IDENTIFICATION AND SIGNALING CHARACTERIZATION OF GNASR201H/C SELECTIVE INHIBITORS FOR FD/MAS

OTHER RESEARCH INITIATIVES: WE SUPPORT, MAINTAIN, AND ADVANCE RESEARCH INITIATIVES, INCLUDING THE FD/MAS PATIENT REGISTRY, AN IRB-APPROVED STUDY, AND RECRUITMENT RESOURCE FOR RESEARCHERS. FD/MAS ALLIANCE IS INSTRUMENTAL IN DEVELOPING AND FORMALIZING AN INTERNATIONAL COALITION OF FD/MAS PATIENT GROUPS AND RESEARCHERS.

COMMUNITY EDUCATION: WE EMPOWER THE FD/MAS COMMUNITY WITH THE BEST EDUCATIONAL RESOURCES AND SHARE THESE RESOURCES ON THE FD/MAS ALLIANCE'S RECENTLY UPDATED WEBSITE. WE PRODUCED AND SHARED SIX EDUCATIONAL WEBINARS FOR PATIENTS AND CAREGIVERS DURING THE FISCAL YEAR.

FD/MAS ALLIANCE, IN ADDITION TO ITS OTHER PROGRAM SERVICES: - IN SPRING 2022, FD/MAS RAISED 160,000 FOR 2 - 4 RESEARCH PROJECTS THAT WILL BE ANNOUNCED IN 2022 AND AWARDED IN 2023 (THESE FIGURES INCLUDE AN ADDITIONAL 53,825 GIVEN DIRECTLY TO RESEARCH WHICH THE FD/MAS ALLIANCE RAISED FROM THE MILLION DOLLAR BIKE RIDE THROUGH UPENN MATCHING FUNDS, REGISTRATION FEES, AND ASSOCIATION MASFD.) - PROVIDES SUPPORT AND MEDICAL RESOURCES TO INDIVIDUALS AND THEIR FAMILIES WHO ARE AFFECTED BY THE DISEASE BY ANSWERING INDIVIDUAL INQUIRIES AND MAINTAINING A WEBSITE THAT INCLUDES DETAILED FD/MAS RESOURCES, INCLUDING A PHYSICIAN DATABASE. - EXPANDS AND STRENGTHENS THE NETWORK OF FD/MAS RESEARCHERS AND PATIENT ADVOCATES WORLDWIDE THROUGH A NUMBER OF COMMUNICATIONS AND ALLIANCE- BUILDING INITIATIVES INCLUDING A BIENNIAL CONFERENCE (NOTE: THE CONFERENCE WAS IN 2017; DUE TO LEADERSHIP TRANSITIONS AND THE PANDEMIC, OUR NEXT CONFERENCE WILL BE IN 2023). - ENGAGES IN ADVOCACY TO ENSURE FUNDING OPPORTUNITIES FOR RESEARCHERS INCLUDING HAVING THE FD INCLUDED IN THE DEPARTMENT OF DEFENSE PEER REVIEWED MEDICAL RESEARCH PROGRAM. - REMOTELY ATTENDS, OR WHEN APPROPRIATE, TRAVELS TO ATTEND DOMESTIC AND INTERNATIONAL SCIENTIFIC MEETINGS TO PROMOTE FD/MAS RESEARCH OPPORTUNITIES TO EXPAND THE NETWORK OF ENGAGED RESEARCHERS AND THERAPEUTIC DEVELOPERS - PROVIDES MENTORING AND COMMUNITY BUILDING AMONG OTHER FD/MAS PATIENT ORGANIZATIONS TO ENHANCE THE EFFECTIVENESS AND COORDINATION OF THESE GROUPS WORLDWIDE.