Fam177a1 Research Fund
Public records show a registered, tax-exempt organization in good standing.
What it says it does
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
- Income
- $333,831
- Spending
- $272,224
- Spent on programs
- 91%
- Reserves
- 14.4 months of spending
- Largest source of income
- donations and private grants, 100%
- Employees
- 0
- Volunteers
- 15
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: 100 out of 100. Higher than 81% of charities in its peer group (medical research, $250k to $1m).
Reserves
35 of 35Spendable reserves would cover 14.4 months of spending.
Debt
20 of 20It owes 0% of what it owns.
Living within its means
15 of 15Income exceeded spending by 18% of income.
Income trend
15 of 15Income rose 9% on the year before.
Spending floor
15 of 1591% of spending went to programs and raising each dollar of donations cost 6 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
Good: 83 out of 100. Higher than 64% of charities in its peer group (medical research, $250k to $1m).
Independent board
18 of 254 of 4 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.
Independent check of accounts
6 of 15Its accounts were not audited or reviewed 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)
- $153,211 spent. Patient Advocacy & Data: Global Networking: Successfully connected with more families globally, including new cases in the Middle East and Europe, increasing the known patient cohort to facilitate research.
- $93,601 spent. 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.
- Fundraising & Awareness: The Organization saw a record-breaking year for community engagement: FAM JAM 2025: The 2nd annual FAM JAM event in Seattle raised $280,000, directly fueling the research pipeline. Impact Reporting: Released the 2024 Impact Report in March 2025, providing transparency and documenting the foundations growth and scientific strategy for donors.
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 September 7, 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 September 30, 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 September 10, 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 September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since June 2022.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 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 7, 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.