Nonprofit · EIN 02-0715210
FIBROUS DYSPLASIA FOUNDATION INC
Tax-exempt · BETHESDA, MD 20814
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| June 30, 2025 | 990 | $245,764 | $270,098 | -$24,334 | $243,546 | $237,726 | $5,820 |
| June 30, 2024 | 990 | $322,942 | $388,138 | -$65,196 | $267,364 | $237,210 | $30,154 |
Financial details: 990 for the year ended June 30, 2025
Revenue
- Contributions, gifts and grants
- $238,806
- Program service revenue
- $0
- Investment income
- $6,958
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $0
- Compensation of officers, directors and key employees
- $107,492
- Other salaries and wages
- $79,240
- Salaries, compensation and benefits (total)
- $200,293
- Professional fundraising fees
- $0
- Accounting fees
- $5,750
- Travel
- $5,118
- Program services (functional)
- $200,715
- Management and general (functional)
- $47,976
- Fundraising (functional)
- $21,407
Balance sheet and other
- Total assets, start of year
- $267,364
- Total assets, end of year
- $243,546
- Total liabilities, end of year
- $237,726
- Net assets, end of year
- $5,820
- Net assets without donor restrictions
- $5,820
- Gross receipts
- $245,764
- Employees
- 3
- Volunteers
- 100
- Year formed
- 2004
- State of legal domicile
- FL
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended June 30, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ADRIENNE MCBRIDE | EXECUTIVE DI Officer | 40 | $88,857 |
| ANNE CORVELLE | BOARD PRESID Trustee or director, Officer | 2 | $0 |
| CINDI BRANDT LEVIN | BOARD VICE P Trustee or director, Officer | 2 | $0 |
| CHRISTOPHER GUEST | TREASURER Trustee or director, Officer | 2 | $0 |
| MALISSA KENNEY | SECRETARY Trustee or director, Officer | 2 | $0 |
| MICHAEL COLLINS | DIRECTOR Trustee or director | 0.5 | $0 |
| JUSTIN COHEN | DIRECTOR Trustee or director | 0.5 | $0 |
| JUSTIN HEALY | DIRECTOR Trustee or director | 0.5 | $0 |
| ERIC CHIEN-WEI LIAO | DIRECTOR Trustee or director | 0.5 | $0 |
| GARY POLLASTRO | DIRECTOR Trustee or director | 0.5 | $0 |
| CARMEL SHEMMESH-RAFALOWSKY | DIRECTOR Trustee or director | 0.5 | $0 |
990 for the year ended June 30, 2024: 12 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ADRIENNE MCBRIDE | EXECUTIVE DI Officer | 40 | $82,142 |
| ANNE CORVELLE | BOARD PRESID Trustee or director, Officer | 2 | $0 |
| CINDI BRANDT LEVIN | BOARD VICE P Trustee or director, Officer | 2 | $0 |
| CHRIS GUEST | TREASURER Trustee or director, Officer | 2 | $0 |
| MALISSA KENNEY | SECRETARY Trustee or director, Officer | 2 | $0 |
| NICOLA DEELEY | DIRECTOR Trustee or director | 0.5 | $0 |
| JUSTIN COHEN | DIRECTOR Trustee or director | 0.5 | $0 |
| JUSTIN HEALY | DIRECTOR Trustee or director | 0.5 | $0 |
| ERIC CHIEN-WEI LIAO | DIRECTOR Trustee or director | 0.5 | $0 |
| GARY POLLASTRO | DIRECTOR Trustee or director | 0.5 | $0 |
| CARMEL SHEMMESH-RAFALOWSKY | DIRECTOR Trustee or director | 0.5 | $0 |
| LAUREN RUOTOLO | DIRECTOR Trustee or director | 0.5 | $0 |
Address and contacts
- Address (IRS master file)
- 7315 WISCONSIN AVE, BETHESDA, MD 20814-3202
- In care of
- % LAUREN RUOTOLO PRESIDENT
- Principal officer (990 for 2024)
- ANNE CORVELLE, 848 LANDIS AVE, LANCASTER, PA 17603
- Signed the 990
- ANNE CORVELLE, BOARD PRESIDENT
- Phone
- (301) 467-8979
- Website
- WWW.FDMASALLIANCE.ORG
- Return prepared by
- TAYLOR ROTH AND COMPANY
Mission
THE FIBROUS DYSPLASIA FOUNDATION SERVES PEOPLE AFFECTED WITH FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT SYNDROME THROUGH PROGRAMS OF RESEARCH, EDUCATION, AWARENESS AND SUPPORT.
Program accomplishments
- 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.Expenses $74,265
- 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.Expenses $56,200
- 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 CAREExpenses $54,193
- 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.Expenses $16,057
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in June, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | June 30, 2026 | November 16, 2026 | Not due yet |
| 2024 | June 30, 2025 | November 17, 2025 | 990 on file |
| 2023 | June 30, 2024 | November 15, 2024 | 990 on file |
IRS record
- EIN
- 02-0715210
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2005
- Accounting year ends
- June
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G99)
- Assets (IRS master file)
- $243,546
- Income (IRS master file)
- $245,764
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | June 2025 | $245,764 | $270,098 | $243,546 | XML |
| 990 | June 2024 | $322,942 | $388,138 | $267,364 | XML |
| 990 | June 2023 | $282,768 | $377,909 | $329,399 | IRS |
| 990 | June 2022 | – | – | – | IRS |
| 990 | June 2021 | – | – | – | IRS |
| 990 | June 2020 | – | – | – | IRS |
| 990 | June 2019 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 02-0715210).
Questions about FIBROUS DYSPLASIA FOUNDATION INC
- What is the EIN of FIBROUS DYSPLASIA FOUNDATION INC?
- The employer identification number (EIN) of FIBROUS DYSPLASIA FOUNDATION INC is 02-0715210.
- Is FIBROUS DYSPLASIA FOUNDATION INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2005.
- Are donations to FIBROUS DYSPLASIA FOUNDATION INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does FIBROUS DYSPLASIA FOUNDATION INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of FIBROUS DYSPLASIA FOUNDATION INC due?
- The return for tax year 2025 (the year ending June 30, 2026) is due November 16, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did FIBROUS DYSPLASIA FOUNDATION INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended June 2025.
- Who is the principal officer of FIBROUS DYSPLASIA FOUNDATION INC?
- The 990 for the year ended June 30, 2025 names ANNE CORVELLE.
- Who are the officers and directors of FIBROUS DYSPLASIA FOUNDATION INC?
- The 990 for the year ended June 30, 2025 lists 11 people; 1 received compensation from the organization, the highest $88,857 (ADRIENNE MCBRIDE, EXECUTIVE DI).
- How much revenue does FIBROUS DYSPLASIA FOUNDATION INC have?
- On its 990 for the year ended June 30, 2025 it reported revenue of $245,764, expenses of $270,098 and total assets of $243,546 at year end.
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All nonprofits in BETHESDA · Maryland · Voluntary health associations and medical disciplines