Asxl Rare Research Endowment Foundation

Nonprofit profile at a glance

EIN
823890665
IRS 990 coverage
2019–2024
Forms available
Form 990 2024, Form 990-N 2018
Location
Gorham, ME, USA
Phone
2078818080
Rating
69
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Reported finances

Revenue
$887,604
Expenses
$474,919
Assets
$1,081,250
Liabilities
$1,272

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

8 people listed

Executive titles in this filing

  • Amanda Johnson (Executive Director)
  • Laura Badmaev (President)

Highest reported compensation

  • Amanda Johnson (Executive Director): $105,900 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Support research and education that lead to improved quality of life for individuals with ASXL syndromes.

What it reported doing in 2024

ASXL Registry and Biobank. These are foundational tools based on patient data & samples which researchers will utilize to study and increase our knowledge of ASXL Syndromes

Operating model

Revenue model
Donor-supported. 96% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 62% of its reported program spending out as grants.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and the filing reports few safeguards for money sent abroad.

Rating breakdown

  • Financial Efficiency: 59
  • Transparency & Controls: 67
  • Accountability: 84
  • Sustainability: 74
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 44.1%; rating input score 44
  • Program expense ratio: 79.5%; rating input score 80
  • Fundraising efficiency: $32.8 raised per $1 spent on fundraising; rating input score 70; 70th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 81.8%; rating input score 82; 1st 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: 100%; rating input score 100; 76th 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: 5 of 8 controls in place; rating input score 62
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • 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: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 46.5%; rating input score 91; 91st percentile among comparable filings
  • Total-asset coverage ratio: 2.28; rating input score 68; 68th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 79; 79th percentile among comparable filings
  • Officer compensation ratio: 22.3%; rating input score 12; 12th percentile among comparable filings

Growth

  • Program expense growth: 11.8% per year; rating input score 100; 68th percentile among comparable filings
  • Revenue growth: 1.6% per year; rating input score 100; 22nd percentile among comparable filings
  • Asset growth: 5.8% per year; rating input score 100; 42nd percentile among comparable filings

Details

  • Where the money goes: 44.1% of revenue deployed · 79.5% of spending went to programs
  • Governance: 7 of 7 board members independent · 5 of 8 filing controls reported
  • Programs: 4 filed program accomplishments · $378K in reported program spending
  • Leadership: top reported pay $106K · 8 people listed
  • Consistency: 28 of 30 current checks pass · 2 findings to review
  • Schedules: 6 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 5 filing years from 2019 to 2024
  • Contacts: How to reach this organization
  • Money network: 5 filed money-flow records
  • Related organizations: 3 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.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

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

  • Moderate — Financial Efficiency: Mission deployment rate scored 44/100.
  • High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
  • Review — Accountability: Governance controls: 2 of 7 not reported.
  • High — Sustainability: Officer compensation ratio scored 12/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.