2024-11-13T12:08:42-05:00 2024-06-30 203746583 TAYLOR ROTH AND COMPANY 800 GRANT ST STE 205 DENVER CO 802032944 990 2023-07-01 020715210 THE FIBROUS DYSPLASIA FOUNDATION FIBR 3014678979 BOX 1199 4701 SANGAMORE RD STE 100N BETHESDA MD 20816 ANNE CORVELLE BOARD PRESIDENT 3016421632 2024-11-13 true true KEN ROTH P01389203 3038308109 2024-11-13 2023 2024-10-15 13:58:12Z FDMAS ALLIANCE ANNE CORVELLE 848 LANDIS AVE LANCASTER PA 17603 322942 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 3 120 0 282634 317260 0 134 5682 0 282768 322942 109247 53673 0 182005 186573 0 58627 86657 147892 377909 388138 -95141 -65196 329399 267364 234049 237210 95350 30154 X THE FIBROUS DYSPLASIA FOUNDATION SERVES PEOPLE AFFECTED WITH FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT SYNDROME THROUGH PROGRAMS OF RESEARCH, EDUCATION, AWARENESS AND SUPPORT. false false 116739 53673 RESEARCH PROGRAMS: - IN PARTNERSHIP WITH THE UPENN ORPHAN DISEASE CENTER AND THE MILLION DOLLAR BIKE RIDE (MDBR) PROGRAM, FD/MAS ALLIANCE FUNDED THREE RESEARCH PROJECTS IN FISCAL 2023-24 - "PROBING CENTRAL AND PERIPHERAL MECHANISMS OF PAIN AND DYSFUNCTION IN FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT" (BOSTON CHILDREN'S HOSPITAL) - "SPATIAL TRANSCRIPTOMICS TO ELUCIDATE TEH MECHANISM OF ANTI-RANKL INHIBITION OF FIBROUS DYSPLASIA BONE LESIONS" (BRIGHAM & WOMEN'S HOSPITAL) - "TESTING THE SPECIFICITY AND EFFICACY OF COMPOUNDS THAT INHIBIT CAMP SIGNALING FOR THE DEVELOPMENT OF POTENTIAL THERAPEUTICS FOR FD/MAS" (UNIVERSITY OF CALIFORNIA DAVIS AND BOSTON COLLEGE) IN SPRING 2024, FD/MAS ALLIANCE RAISED 120,702 IN MDBR GRANTS FOR FD/MAS RESEARCH TO BE ANNOUNCED IN 2024 AND AWARDED IN 2025. - SUPPORT AND MAINTENANCE OF THE FD/MAS PATIENT REGISTRY, AN IRB-APPROVED STUDY. 83405 FD/MAS CONFERENCE THE 2023 FD/MAS ALLIANCE COMMUNITY CONFERENCE COMBINED PATIENT-CENTERED SCIENCE WITH REAL-WORLD STRATEGIES FOR THOSE AFFECTED BY FD/MAS. IT ALSO HOSTED THE INAUGURAL MEETING OF THE INTERNATIONAL CONSORTIUM FOR FD/MAS (ICFDMAS), WHICH UPDATED MANAGEMENT GUIDELINES AND REPRESENTED A GLOBAL COLLABORATION SPEARHEADED BY THE FD/MAS ALLIANCE. 58520 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. 17154 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. 17154 275818 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 true 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 ADRIENNE MCBRIDE 3014678979 BOX 1199 4701 SANGAMORE RD STE 100N BETHESDA MD 20816 ADRIENNE MCBRIDE EXECUTIVE DI 40.00 X 82142 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 CHRIS GUEST TREASURER 2.00 X X 0 0 0 MALISSA KENNEY SECRETARY 2.00 X X 0 0 0 NICOLA DEELEY 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 LAUREN RUOTOLO DIRECTOR 0.50 X 0 0 0 82142 false false false 317260 317260 5682 5682 322942 5682 53673 53673 84011 51793 13685 18533 89967 55475 14650 19842 12595 6867 2865 2863 9076 9076 14511 8156 3230 3125 14017 13267 750 10155 5402 666 4087 8889 6075 2814 8786 8461 325 50120 50120 5784 5784 6116 2990 2138 988 PROFESSIONAL DEVELOPMENT 9850 4550 5300 NORD REGISTRY ANNUAL FEE 5000 5000 FEES 3549 1950 1599 DUES AND SUBSCRIPTIONS 1112 1112 927 927 388138 275818 53693 58627 53430 52464 250906 214900 25063 329399 267364 24349 27510 209700 209700 234049 237210 X 95350 30154 95350 30154 329399 267364 -65196 X true X false true false X 245016 394960 397845 282634 317260 1637715 245016 394960 397845 282634 317260 1637715 18804 26300 45104 18804 26300 45104 1592611 19 117 141 134 5682 6093 19 117 141 134 5682 6093 245035 395077 397986 282768 322942 1643808 0.96890 0.97480 0.00000 0.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 160 160 387978 388138 77628 19407 81728 75301 75582 77628 310239 465359 88 20 125 160 393 20432 18825 18896 19407 77560 116340 88 20 125 160 393 SBA EIDL 209700 209700 true TRUSTEES OF UPENN 3451 WALNUT ST SUITE 305 PHILADELPHIA PA 19104 231352685 501C3 53673 FORM 990, PAGE 2, PART III, LINE 4A RESEARCH PROGRAMS: - IN PARTNERSHIP WITH THE UPENN ORPHAN DISEASE CENTER AND THE MILLION DOLLAR BIKE RIDE (MDBR) PROGRAM, FD/MAS ALLIANCE FUNDED THREE RESEARCH PROJECTS IN FISCAL 2023-24 - "PROBING CENTRAL AND PERIPHERAL MECHANISMS OF PAIN AND DYSFUNCTION IN FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT" (BOSTON CHILDREN'S HOSPITAL) - "SPATIAL TRANSCRIPTOMICS TO ELUCIDATE TEH MECHANISM OF ANTI-RANKL INHIBITION OF FIBROUS DYSPLASIA BONE LESIONS" (BRIGHAM & WOMEN'S HOSPITAL) - "TESTING THE SPECIFICITY AND EFFICACY OF COMPOUNDS THAT INHIBIT CAMP SIGNALING FOR THE DEVELOPMENT OF POTENTIAL THERAPEUTICS FOR FD/MAS" (UNIVERSITY OF CALIFORNIA DAVIS AND BOSTON COLLEGE) IN SPRING 2024, FD/MAS ALLIANCE RAISED 120,702 IN MDBR GRANTS FOR FD/MAS RESEARCH TO BE ANNOUNCED IN 2024 AND AWARDED IN 2025. - SUPPORT AND MAINTENANCE OF THE FD/MAS PATIENT REGISTRY, AN IRB-APPROVED STUDY. 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.