Fibrous Dysplasia Foundation Inc
- Assets
- $329.4k
- Revenue
- $282.8k
- Investments
- $0.0
- Employees
- 3
- Location
- Bethesda, MD
- Founding
- 10/2005
- Data as of
- 06/2023
- EIN
- 02-0715210
Organization Overview
Fibrous Dysplasia Foundation Inc, operating under the name Fdmas Alliance, is located in Bethesda, MD. The organization was established in 2005. According to its NTEE Classification (G99) the organization is classified as: Voluntary Health Associations & Medical Disciplines N.E.C., under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 06/2023, Fdmas Alliance employed 3 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Fdmas Alliance is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 06/2023, Fdmas Alliance generated $282.8k in total revenue. This organization has experienced exceptional growth, as over the past 8 years, it has increased revenue by an average of 27.9% each year . All expenses for the organization totaled $377.9k during the year ending 06/2023. While expenses have increased by 37.8% per year over the past 8 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
THE FIBROUS DYSPLASIA FOUNDATION SERVES PEOPLE AFFECTED WITH FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT SYNDROME THROUGH PROGRAMS OF RESEARCH, EDUCATION, AWARENESS AND SUPPORT.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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 2022: TITLE: PAIN AND ANALGESIC MECHANISMS IN A MOUSE MODEL OF FIBROUS DYSPLASIA. INSTITUTION: UNIVERSITY OF COPENHAGEN TITLE: INVESTIGATING KEY CLINICAL ASPECTS OF FIBROUS DYSPLASIA OF BONE IN A TRANSGENIC MOUSE MODEL (EF1A-GSR201C MICE) OF THE DISEASE: PAIN, EFFECT OF ANTI-RESORPTIVE TREATMENTS AND REBOUND PHENOMENON. INSTITUTION: SAPIENZA UNIVERSITY OF ROME IN SPRING 2023, TEAM FD/MAS AND PARTNERS RAISED 161,284 FOR 2 - 4 RESEARCH PROJECTS THAT WILL BE ANNOUNCED IN 2023 AND AWARDED IN 2024.
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, LISTS OF VETTED CLINICIANS WITH EXPERIENCE TREATING THE DISEASE, 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.
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 WEBSITE AND YOUTUBE CHANNEL. WE PRODUCE AND SHARE EDUCATIONAL WEBINARS FOR PATIENTS AND CAREGIVERS DURING THE FISCAL YEAR. NOTE: FD/MAS ALLIANCE HOSTED A THREE-DAY FD/MAS COMMUNITY CONFERENCE IN SEPTEMBER 2023 AFTER THE CLOSE OF THE FISCAL YEAR.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Adrienne Mcbride Executive Di | Officer | 40 | $84,976 |
Anne Corvelle Board Presid | OfficerTrustee | 2 | $0 |
Cindi Brandt Levin Board Vice P | OfficerTrustee | 2 | $0 |
Malissa Kenney Secretary | OfficerTrustee | 2 | $0 |
Nicola Deely Director | Trustee | 0.5 | $0 |
Justin Healy Director | Trustee | 0.5 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $282,634 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $282,634 |
| Total Program Service Revenue | $0 |
| Investment income | $134 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $282,768 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $109,247 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $84,976 |
| Compensation of current officers, directors, key employees. | $12,746 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $83,767 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $13,262 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $8,801 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $12,929 |
| Advertising and promotion | $15,376 |
| Office expenses | $9,042 |
| Information technology | $11,610 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $4,688 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $580 |
| Interest | $5,809 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $7,237 |
| All other expenses | $0 |
| Total functional expenses | $377,909 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $53,430 |
| Savings and temporary cash investments | $250,906 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $25,063 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $329,399 |
| Accounts payable and accrued expenses | $24,349 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $209,700 |
| Total liabilities | $234,049 |
| Net assets without donor restrictions | $95,350 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $329,399 |