The National Fragile X Foundation

Nonprofit profile at a glance

EIN
840960471
IRS 990 coverage
2012–2025
Forms available
Form 990 2025
Location
Washington, DC, USA
Phone
8006888765
Rating
80
Verdict
STRONG
Rating confidence
Moderate
Sector
Birth Defects, Genetic Diseases Research

Official website

Reported finances

Revenue
$2,291,142
Expenses
$2,187,406
Assets
$4,034,589
Liabilities
$1,440,559

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

17 people listed

Executive titles in this filing

  • HILARY ROSSELOT (EXECUTIVE DIRECTOR)
  • KARA FRECH (BOARD VICE-PRESIDENT)

Highest reported compensation

  • HILARY ROSSELOT (EXECUTIVE DIRECTOR): $160,298 total reported compensation
  • KRISTIN BOGART (SENIOR DIRECTOR, DEVELOPMENT & COMMUNICATION): $124,204 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

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.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 92% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 87% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

STRONG - The filed numbers largely add up and a large share of available resources goes toward mission work. Fundraising costs are high for each dollar raised and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 64
  • Transparency & Controls: 90
  • Accountability: 100
  • Sustainability: 41
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 66.3%; rating input score 66
  • Program expense ratio: 68.2%; rating input score 68
  • Fundraising efficiency: $11.98 raised per $1 spent on fundraising; rating input score 42; 42nd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.3%; rating input score 93; 18th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 75th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 8 of 8 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 4.5%; rating input score 41; 41st percentile among comparable filings
  • Total-asset coverage ratio: 1.84; rating input score 55; 55th percentile among comparable filings
  • Liabilities to assets ratio: 0.36; rating input score 23; 23rd percentile among comparable filings
  • Officer compensation ratio: 13%; rating input score 26; 26th percentile among comparable filings

Growth

  • Program expense growth: 2.1% per year; rating input score 100; 20th percentile among comparable filings
  • Revenue growth: 3.1% per year; rating input score 100; 23rd percentile among comparable filings
  • Asset growth: 15.4% per year; rating input score 100; 75th percentile among comparable filings

Details

  • Where the money goes: 66.3% of revenue deployed · 68.2% of spending went to programs
  • Governance: 14 of 14 board members independent · 8 of 8 filing controls reported
  • Programs: 4 filed program accomplishments · $1.5M in reported program spending
  • Leadership: top reported pay $160K · 17 people listed
  • Highest-paid contractors: 1 contractor listed · $136K reported
  • Consistency: 32 of 33 current checks pass · 1 finding to review
  • Schedules: 8 filed schedules · includes major donors and grants
  • Filing history: 14 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • Money network: 6 filed money-flow records
  • Related organizations: 4 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Moderate — Financial Efficiency: Fundraising efficiency scored 42/100.
  • Moderate — Sustainability: Operating margin scored 41/100.
  • Review — Sustainability: Total-asset coverage ratio scored 55/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • High — Sustainability: Liabilities to assets ratio scored 23/100.
  • High — Sustainability: Officer compensation ratio scored 26/100.