2026-01-06T19:40:11-05:00 2025-06-30 203746583 TAYLOR ROTH AND COMPANY 1580 LINCOLN ST STE 520 DENVER CO 802031517 990 2024-07-01 020715210 THE FIBROUS DYSPLASIA FOUNDATION FIBR 3014678979 BOX 1199 4701 SANGAMORE RD STE 100N BETHESDA MD 20816 ANNE CORVELLE BOARD PRESIDENT 3016421632 2026-01-04 true true KEN ROTH P01389203 3038308109 2026-01-06 2024 2025-03-06 01:10:19Z FDMAS ALLIANCE ANNE CORVELLE 848 LANDIS AVE LANCASTER PA 17603 245764 false X WWW.FDMASALLIANCE.ORG X 2004 FL THE FIBROUS DYSPLASIA FOUNDATION SERVES PEOPLE AFFECTED WITH FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT SYNDROME THROUGH PROGRAMS OF RESEARCH, EDUCATION, AWARENESS AND SUPPORT. 11 11 3 100 0 317260 238806 0 5682 6958 0 322942 245764 53673 0 0 186573 200293 0 21407 147892 69805 388138 270098 -65196 -24334 267364 243546 237210 237726 30154 5820 X THE FIBROUS DYSPLASIA FOUNDATION SERVES PEOPLE AFFECTED WITH FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT SYNDROME THROUGH PROGRAMS OF RESEARCH, EDUCATION, AWARENESS AND SUPPORT. false false 74265 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. 56200 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. 54193 EDUCATION PROGRAM: -WE EMPOWER THE FD/MAS COMMUNITY WITH THE BEST EDUCATIONAL RESOURCES AND SHARE THESE RESOURCES ON THE FD/MAS ALLIANCE'S WEBSITE AND YOUTUBE CHANNEL. WE PRODUCE AND SHARE EDUCATIONAL WEBINARS FOR PATIENTS AND CAREGIVERS." -MONTHLY WEB PROGRAMMING, DESIGNED AND HOSTED BY FD/MAS ALLIANCES PATIENT ADVISORY COUNCIL, OFFERS AN OPPORTUNITY FOR PATIENTS AND CAREGIVERS TO CONNECT, SHARE EXPERIENCES, AND ASK QUESTIONS IN A SAFE AND SUPPORTIVE SPACE. THIS YEAR, PROGRAMS COVERED TOPICS FOCUSED ON QUALITY OF LIFE AS WELL AS MEDICAL AND EDUCATIONAL PROGRAMMING: LIVING INDEPENDENTLY WITH FD/MAS NAVIGATING RELATIONSHIPS WITH FD/MAS ENCOURAGING SELF-ADVOCACY TOOLS FOR TOUGH TIMES CLINICAL TRIALS 101 PSYCHOLOGY IN PEDIATRIC CARE 16057 FD/MAS ALLIANCE, IN ADDITION TO ITS OTHER PROGRAM SERVICES: - MAINTAINS A COMPREHENSIVE, UP-TO-DATE REPOSITORY OF INFORMATION FOR PATIENTS, CAREGIVERS, AND MEDICAL PRACTITIONERS, INCLUDING RECENT RESEARCH PUBLICATIONS, DIAGNOSIS AND TREATMENT GUIDELINES, RELEVANT FUNDING OPPORTUNITIES FOR BASIC AND CLINICAL INVESTIGATORS, AND INFORMATION ON ONGOING CLINICAL TRIALS IN FD/MAS. - EXPANDS AND STRENGTHENS THE NETWORK OF FD/MAS RESEARCHERS AND PATIENT ADVOCATES WORLDWIDE THROUGH EDUCATION, COMMUNICATIONS, AND ALLIANCE- BUILDING INITIATIVES, INCLUDING A BIENNIAL CONFERENCE. - REMOTELY ATTENDS OR, WHEN SUITABLE, TRAVELS TO BOTH DOMESTIC AND INTERNATIONAL SCIENTIFIC GATHERINGS TO ADVOCATE FOR FD/MAS RESEARCH OPPORTUNITIES TO BROADEN THE NETWORK OF INVOLVED RESEARCHERS AND OTHER STAKEHOLDERS WORKING ON POTENTIAL THERAPIES. - PROVIDES MENTORING AND COMMUNITY BUILDING AMONG OTHER FD/MAS PATIENT ORGANIZATIONS TO ENHANCE THE EFFECTIVENESS AND COORDINATION OF THESE GROUPS WORLDWIDE. 16057 200715 true true false true false false false false false false false false false false true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 5 0 true 3 true false false false false false false false false false false false false X 11 11 false false false false false false false true true false false true true true true true true true false false CA FL IL MD MA NY OR PA X X X ADRIENNE MCBRIDE 3014678979 BOX 1199 4701 SANGAMORE RD STE 100N BETHESDA MD 20816 ADRIENNE MCBRIDE EXECUTIVE DI 40.00 X 88857 0 0 ANNE CORVELLE BOARD PRESID 2.00 X X 0 0 0 CINDI BRANDT LEVIN BOARD VICE P 2.00 X X 0 0 0 CHRISTOPHER GUEST TREASURER 2.00 X X 0 0 0 MALISSA KENNEY SECRETARY 2.00 X X 0 0 0 MICHAEL COLLINS DIRECTOR 0.50 X 0 0 0 JUSTIN COHEN DIRECTOR 0.50 X 0 0 0 JUSTIN HEALY DIRECTOR 0.50 X 0 0 0 ERIC CHIEN-WEI LIAO DIRECTOR 0.50 X 0 0 0 GARY POLLASTRO DIRECTOR 0.50 X 0 0 0 CARMEL SHEMMESH-RAFALOWSKY DIRECTOR 0.50 X 0 0 0 88857 false false false 238806 238806 6958 6958 245764 6958 107492 87779 16192 3521 79240 64977 11886 2377 291 183 54 54 13270 8359 2456 2455 5750 5750 12578 6223 3230 3125 2458 2273 132 53 4989 1188 82 3719 9623 6633 2990 5118 4913 205 57 57 5721 5721 4307 2110 1507 690 DUES AND SUBSCRIPTIONS 8627 8627 PROFESSIONAL DEVELOPMENT 4076 1875 2201 NORD REGISTRY ANNUAL FEE 3974 3974 FEES 1958 1077 881 569 467 85 17 270098 200715 47976 21407 52464 43627 214900 191858 8061 267364 243546 27510 32248 209700 205478 237210 237726 X 30154 5820 30154 5820 267364 243546 -24334 X true X false true false X 394960 397845 282634 317260 238806 1631505 394960 397845 282634 317260 238806 1631505 18804 26300 10000 55104 18804 26300 10000 55104 1576401 117 141 134 5682 6958 13032 117 141 134 5682 6958 13032 395077 397986 282768 322942 245764 1644537 0.95860 0.96890 0.01000 0.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 270098 270098 54020 13505 75301 75582 77628 54020 282531 423797 20 125 160 305 18825 18896 19407 13505 70633 105950 20 125 160 305 SBA EIDL 205478 205478 FORM 990, PAGE 2, PART III, LINE 4A 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. FORM 990, PAGE 2, PART III, LINE 4B 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. FORM 990, PAGE 2, PART III, LINE 4C EDUCATION PROGRAM: -WE EMPOWER THE FD/MAS COMMUNITY WITH THE BEST EDUCATIONAL RESOURCES AND SHARE THESE RESOURCES ON THE FD/MAS ALLIANCE'S WEBSITE AND YOUTUBE CHANNEL. WE PRODUCE AND SHARE EDUCATIONAL WEBINARS FOR PATIENTS AND CAREGIVERS." -MONTHLY WEB PROGRAMMING, DESIGNED AND HOSTED BY FD/MAS ALLIANCES PATIENT ADVISORY COUNCIL, OFFERS AN OPPORTUNITY FOR PATIENTS AND CAREGIVERS TO CONNECT, SHARE EXPERIENCES, AND ASK QUESTIONS IN A SAFE AND SUPPORTIVE SPACE. THIS YEAR, PROGRAMS COVERED TOPICS FOCUSED ON QUALITY OF LIFE AS WELL AS MEDICAL AND EDUCATIONAL PROGRAMMING: LIVING INDEPENDENTLY WITH FD/MAS NAVIGATING RELATIONSHIPS WITH FD/MAS ENCOURAGING SELF-ADVOCACY TOOLS FOR TOUGH TIMES CLINICAL TRIALS 101 PSYCHOLOGY IN PEDIATRIC CARE FORM 990, PAGE 2, PART III, LINE 4D FD/MAS ALLIANCE, IN ADDITION TO ITS OTHER PROGRAM SERVICES: - MAINTAINS A COMPREHENSIVE, UP-TO-DATE REPOSITORY OF INFORMATION FOR PATIENTS, CAREGIVERS, AND MEDICAL PRACTITIONERS, INCLUDING RECENT RESEARCH PUBLICATIONS, DIAGNOSIS AND TREATMENT GUIDELINES, RELEVANT FUNDING OPPORTUNITIES FOR BASIC AND CLINICAL INVESTIGATORS, AND INFORMATION ON ONGOING CLINICAL TRIALS IN FD/MAS. - EXPANDS AND STRENGTHENS THE NETWORK OF FD/MAS RESEARCHERS AND PATIENT ADVOCATES WORLDWIDE THROUGH EDUCATION, COMMUNICATIONS, AND ALLIANCE- BUILDING INITIATIVES, INCLUDING A BIENNIAL CONFERENCE. - REMOTELY ATTENDS OR, WHEN SUITABLE, TRAVELS TO BOTH DOMESTIC AND INTERNATIONAL SCIENTIFIC GATHERINGS TO ADVOCATE FOR FD/MAS RESEARCH OPPORTUNITIES TO BROADEN THE NETWORK OF INVOLVED RESEARCHERS AND OTHER STAKEHOLDERS WORKING ON POTENTIAL THERAPIES. - PROVIDES MENTORING AND COMMUNITY BUILDING AMONG OTHER FD/MAS PATIENT ORGANIZATIONS TO ENHANCE THE EFFECTIVENESS AND COORDINATION OF THESE GROUPS WORLDWIDE. FORM 990, PAGE 6, PART VI, LINE 11B THE FORM 990 IS REVIEWED BY THE EXECUTIVE COMMITTEE. FORM 990, PAGE 6, PART VI, LINE 12C A COPY OF THE CONFLICT OF INTEREST POLICY IS GIVEN TO ALL BOARD MEMBERS, STAFF MEMBERS AND VOLUNTEERS WHEN THEY BEGIN SERVICE WITH THE ORGANIZATION. EACH PERSON SIGNS AND DATES THE POLICY WHEN THEY JOIN THE ORGANIZATION, AND ANNUALLY THEREAFTER. FORM 990, PAGE 6, PART VI, LINE 15A COMPENSATION IS BASED ON A COMPARABILITY ANALYSIS, AND IS APPROVED BY TBE BOARD. FORM 990, PAGE 6, PART VI, LINE 19 GOVERNING AND FINANCIAL DOCUMENTS ARE AVAILABLE UPON REQUEST, AND ON THE ORGANIZATION'S WEBSITE.