National Fragile X Foundation
- Assets
- $3.6m
- Revenue
- $1.8m
- Investments
- $0.0
- Employees
- 9
- Location
- Washington, DC
- Founding
- 08/1983
- Data as of
- 12/2023
- EIN
- 84-0960471
Organization Overview
National Fragile X Foundation is located in Washington, DC. The organization was established in 1983. According to its NTEE Classification (H20) the organization is classified as: Birth Defects & Genetic Diseases Research, under the broad grouping of Medical Research and related organizations. As of 12/2023, National Fragile X Foundation employed 9 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Fragile X Foundation 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 12/2023, National Fragile X Foundation generated $1.8m in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 4.1% each year. All expenses for the organization totaled $1.8m during the year ending 12/2023. While expenses have increased by 3.9% per year over the past 9 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
TO PROVIDE UNWAVERING SUPPORT FOR EVERY FAMILY AFFECTED BY FRAGILE X WHILE RELENTLESSLY PURSUING A CURE.
Describe the Organization's Program Activity:
Part 3 - Line 4a
EDUCATION AND SUPPORT - THE NFXF PROVIDES PERSONALIZED SUPPORT, RESOURCES AND REFERRALS TO INDIVIDUALS AND FAMILIES ON THE MULTITUDE OF ISSUES THEY FACE, INCLUDING DIAGNOSIS, GENETICS, BEHAVIOR, TREATMENTS, EDUCATIONAL PLANNING, EMPLOYMENT AND ADULT ISSUES. THE NFXF ORGANIZES EDUCATIONAL CONENT INCLUDING RESOURCES, WEBINARS, VIRUTAL EVENTS, AND EDUCATIONAL CONFERENCES FOR FAMILIES AND PROFESSIONALS ABOUT FRAGILE X SYNDROME AND THE ASSOCIATED CONDITIONS AND DISORDERS TO PROVIDE HOPE AND HELP FAMILIES OVERCOME THE DAILY CHALLENGES OF LIVING WITH FX.
RESEARCH GRANTS - THE NFXF FACILITATES SEVERAL MAJOR RESEARCH STRATEGIES. THE NFXF DATA REPOSITORY, WHICH LEVERAGES PREVIOUSLY COLLECTED DATA FOR NEW PROOF-OF-CONCEPT DRUG TREAMTENT, OUTCOME MEASURE DEVELOPMENT, AND OTHER MEANINGFUL SCIENTIFIC WORK. THE NFXF ALSO FUNDS SUMMER SCHOLAR RESEARCH AWARDS TO PROMOTE THE DEVELOPMENT OF YOUNGER SCIENTISTS IN THE FIELD. THE NFXF ALSO ENABLES A RESEARCH READINESS PROGRAM, A COLLABORATIVE PIPELINE SUPPORTING THE DEVELOPMENT AND EXECUTION OF SCIENTIFICALLY-SOUND, RELEVANT, PATIENT-CENTRIC RESEARCH FROM INITIAL PROGRAM DEVELOPMENT THROUGH RESULTS DISSEMINATION.
ADVOCACY - THE NFXF ORGANIZES AND SUPPORTS A VARIETY OF PERSONAL AND LEGISLATIVE ADVOCACY INITIATIVES. THIS INCLUDES THE VIBRANT AND DEDICATED NETWORK OF VOLUNTEER-LED CHAPTERS ACROSS THE U.S., THE COMMUNITY SUPPORT NETWORK, THESE CHAPTERS DELIVER THE NFXF MISSION ON A LOCAL LEVEL. THE NFXF FACILITATES A YEAR-ROUND LEGISLATIVE ADVOCACY PROGRAM THAT INCLUES AN ANNUAL FLY IN FOR FAMILIES LIVING WITH FRAGILE X TO ADVOCATE FOR RESEARCH FUNDIN-G FOR FRAGILE X AND LEGISLATION THAT POSITIVELY IMPACTS THE COMMUNITY.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Laurie Bridges Board Member | OfficerTrustee | 2 | $0 |
Kara Frech Board Vice-President | OfficerTrustee | 2 | $0 |
Anthony Fasciano Board Treasurer | Trustee | 1 | $0 |
Abby Gaurnt Board Secretary | Trustee | 2 | $0 |
Joe Garera Board Member | Trustee | 1 | $0 |
Denny Haugen Board Secretary | Trustee | 2 | $0 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Pri Inc Website Content And Maintenance | 12/30/22 | $110,544 |
Town And Country Resort Hotel | 12/30/22 | $105,927 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $72,124 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,435,676 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,507,800 |
| Total Program Service Revenue | $252,970 |
| Investment income | $48,081 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$310 |
| Net Income from Fundraising Events | -$6,468 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,802,073 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $129,362 |
| Grants and other assistance to domestic individuals. | $29,963 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $149,120 |
| Compensation of current officers, directors, key employees. | $14,912 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $485,662 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $50,891 |
| Payroll taxes | $53,538 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $0 |
| Fees for services: Lobbying | $60,000 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $463,865 |
| Advertising and promotion | $30,773 |
| Office expenses | $25,365 |
| Information technology | $26,296 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $26,220 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $51,071 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $1,045 |
| Insurance | $14,739 |
| All other expenses | $35,231 |
| Total functional expenses | $1,800,882 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $2,630,834 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $22,228 |
| Accounts receivable, net | $0 |
| 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 | $17,318 |
| Net Land, buildings, and equipment | $51,152 |
| Investments—publicly traded securities | $850,488 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $3,572,020 |
| Accounts payable and accrued expenses | $101,570 |
| Grants payable | $0 |
| Deferred revenue | $979,989 |
| 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 | $0 |
| Total liabilities | $1,081,559 |
| Net assets without donor restrictions | $2,387,741 |
| Net assets with donor restrictions | $102,720 |
| 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 | $3,572,020 |
Grants Awarded
Over the last fiscal year, National Fragile X Foundation has awarded $112,916 in support to 4 organizations.
| Grant Recipient | Amount |
|---|---|
CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER PURPOSE: SUB AWARD | $40,078 |
REGENTS OF THE UNIVERSITY OF MINNESOTA PURPOSE: SUB AWARD | $16,317 |
UNIVERSITY OF CALIFORNIA DAVIS PURPOSE: SUB AWARD | $16,393 |
UNIVERSITY OF COLORADO DENVER PURPOSE: SUB AWARD | $40,128 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
American Society Of Human Genetics Rockville, MD | $21,022,392 | $6,905,083 |
Spinal Research Foundation Reston, VA | $3,378,992 | $1,234,939 |
National Fragile X Foundation Washington, DC | $3,572,020 | $1,802,073 |
Rilite Foundation Charlottesvle, VA | $1,994 | $709,396 |
Eastern Society For Pediatric Research Inc McLean, VA | $217,712 | $0 |
Pediatric Research And Advocacy Initiative Onley, VA | $44,499 | $2,725 |
Clara Inspired Midlothian, VA | $61,494 | $50,180 |
Childrens Roads To Recovery Inc Baltimore, MD | $28,603 | $23,904 |