FAM177A1 Research Fund

Nonprofit profile at a glance

EIN
873607948
IRS 990 coverage
2024–2025
Forms available
Form 990 2025, Form 990-EZ 2023, Form 990-N 2022
Location
Mercer Island, WA, USA
Phone
2063105575
Rating
79
Verdict
SUPPORTED
Rating confidence
Standard
Sector
Birth Defects, Genetic Diseases Research

Official website

Reported finances

Revenue
$333,831
Expenses
$272,224
Assets
$327,249
Liabilities
$0

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

Leadership & pay

4 people listed

Executive titles in this filing

  • Jill Hawkins (Founder & President)
  • Doug Hawkins (Vice President)

People named in this filing

  • Jill Hawkins (Founder & President)
  • Doug Hawkins (Vice President)
  • Beth Sampson (Treasurer)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

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

Overview

Mission

The FAM177A1 Research Fund is a family-led patient advocacy organization dedicated to improving the lives of everyone impacted by FAM177A1 Disorder. We provide hope to affected families while focusing the global research community on FAM177A1 to develop life-transformative treatm

What it reported doing in 2025

Breakthrough Research & Grants: The Fund strategically allocated resources to multiple international research projects aimed at understanding the genes function and developing therapies: Gene Therapy Initiative: Funded a pioneering AAV9-based gene therapy project at Hebrew University led by Professor Rami I. Aqeilan, aiming to deliver functional copies of the FAM177A1 gene. CURE Epilepsy Partnership: Formed a significant partnership with CURE Epilepsy to co-fund a $100,000 grant. This project, led by Dr. Berrak Ugur at Yale University, utilizes patient-derived organoids (brain-in-a-dish) to study how FAM177A1 loss affects neuronal growth and protein transport in the Golgi complex. Model Organism Development: Continued funding for research at the University of Portsmouth (UK) using Xenopus (frog) models to test potential treatments and study early brain development mysteries. Drug Repurposing: Advanced work on fruit fly models to identify existing medications that might be effective for FAM177A1 patients.

Operating model

Revenue model
Donor-supported. 99% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 99% of its reported program spending out as grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 77
  • Transparency & Controls: 75
  • Accountability: 88
  • Sustainability: 63
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 74.3%; rating input score 74
  • Program expense ratio: 90.7%; rating input score 91
  • Fundraising efficiency: $15.94 raised per $1 spent on fundraising; rating input score 49; 49th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 92.3%; rating input score 92; 24th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 0 of 8 controls in place; rating input score 0
    • Claims monitoring procedures: Fail
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 97.5%; rating input score 98; 59th 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; 64th percentile among comparable filings
  • Governance controls: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 18.5%; rating input score 69; 69th percentile among comparable filings
  • Total-asset coverage ratio: 1.2; rating input score 46; 46th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 77; 77th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 67; 67th percentile among comparable filings

Growth

  • Program expense growth: 157.6% per year; rating input score 100; 99th percentile among comparable filings
  • Revenue growth: 46.4% per year; rating input score 100; 96th percentile among comparable filings
  • Asset growth: 54.9% per year; rating input score 100; 96th percentile among comparable filings

Details

  • Where the money goes: 74.3% of revenue deployed · 90.7% of spending went to programs
  • Governance: 4 of 4 board members independent · 5 of 7 filing controls reported
  • Programs: 3 filed program accomplishments · $247K in reported program spending
  • Leadership: top reported pay $0 · 4 people listed
  • Consistency: 22 of 23 current checks pass · 1 finding to review
  • Schedules: 6 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 2 filing years from 2024 to 2025
  • Contacts: How to reach this organization
  • Money network: 4 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.

  • High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 49/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 46/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.