National Fragile X Foundation
Public records show a registered, tax-exempt organization in good standing.
What it says it does
THE NATIONAL FRAGILE X FOUNDATION SERVES THE ENTIRE FRAGILE X COMMUNITY TO LIVE THEIR BEST LIVES BY PROVIDING THE KNOWLEDGE, RESOURCES, AND TOOLS UNTIL, AND EVEN AFTER, MORE EFFECTIVE TREATMENTS AND A CURE ARE ACHIEVED.
- Income
- $2.3 million
- Spending
- $2.2 million
- Spent on programs
- 68%
- Reserves
- 13.2 months of spending
- Largest source of income
- donations and private grants, 93%
- Employees
- 8
- Volunteers
- 0
- Highest pay
- $160,298, executive director
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 90 out of 100. Higher than 65% of charities in its peer group (medical research, $1m to $10m).
Reserves
35 of 35Spendable reserves would cover 13.2 months of spending.
Debt
10 of 20It owes 36% of what it owns.
Living within its means
15 of 15Income exceeded spending by 5% of income.
Income trend
15 of 15Income rose 7% on the year before.
Spending floor
15 of 1568% of spending went to programs and raising each dollar of donations cost 8 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 64% of charities in its peer group (medical research, $1m to $10m).
Independent board
25 of 2514 of 14 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $331,437 spent. 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.
- $284,396 spent. 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.
- $266,535 spent. 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.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since August 1983.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.