ASXL RARE RESEARCH ENDOWMENT FOUNDATION

EIN: 823890665 501(c)(3) Medical Research

Portland, ME

Total Revenue
$283,786
Total Expenses
$229,386
Total Assets
$668,547
Net Assets
$667,293
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Financial Vulnerability Assessment (Tuckman-Chang)

4 risk indicators measuring financial stability and operational resilience

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Financial Trends

Organization Details

Formation Year
2018
Legal Domicile
ME
Principal Officer
Amanda Johnson
Phone
8455986359
Tax Period
2023-01-01 to 2023-12-31

ASXL RARE RESEARCH ENDOWMENT FOUNDATION, founded in 2018, is a small nonprofit in the Medical Research sector that reported $284K in total revenue in fiscal year 2023. Revenue surged 24% from the prior year, signaling strong growth momentum. The organization ran a surplus of $54K, a strong 19% operating margin.

Mission

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

Program Service Accomplishments

Program 1
Expenses: $2,850 Revenue: $0

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

Program 2
Expenses: $82,157 Revenue: $12,434

Research grants. Effective research will bring an understanding of the underlying mechanisms and potential treatments for ASXL syndromes

Program 3
Expenses: $60,509 Revenue: $20,286

Conferences. Meetings to bring together professionals and families to share information and exchange ideas to further our mission.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $262,982
Program Service Revenue $20,286
Investment Income $518
Other Revenue $0
TOTAL REVENUE $283,786

Expense Breakdown

Grants Paid $64,616
Salaries & Benefits $120,152
Fundraising Expenses $25,877
Program Expenses $157,020
Other Expenses $44,618
TOTAL EXPENSES $229,386

Year-over-Year Comparison

2023 2022 Change
Revenue $283,786 $228,516 +0.2%
Expenses $229,386 $224,596 +0.0%
Net Income $54,400 $3,920 +12.9%
Key Indicators
✗ Grants to Organizations ✓ Grants to Individuals ✗ Lobbying ✗ Political Activity ✓ Foreign Activities ✗ Donor Advised Fund ✓ Schedule B Required
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Financial Health Indicators

Comprehensive financial analysis: Altman Z-Score, liquidity, solvency, sustainability, efficiency, and growth metrics

Financial Distress Indicator

Liquidity & Cash Position

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Altman Z-Score • Liquidity Ratios • Solvency Analysis • Growth Indicators • Efficiency Metrics

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Governance

Voting Members
5
Independent Members
5
Employees
1
Volunteers
50

Governance Policies

✓ Conflict of Interest Policy
✓ Whistleblower Policy
✓ Document Retention Policy

Special Practices & Reported Activities

✗ Operated a School
✗ Operated a Hospital
✗ Provided First Class Travel
✗ Reported Conflict of Interest
✗ Reported Asset Diversion
✗ Excess Benefit Transaction
✗ Made Political Expenditures
✗ Engaged in Lobbying
✗ Operated Donor Advised Fund
✗ Maintained Art Collections
✗ Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
2
$0
Total Directors
7
$0
Key Employees
1
$105,900
Highest Compensated
1
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Amanda Johnson Executive Director 40
Key Emp Highest
$105,900 $0 $105,900
Laura Badmaev President 5
Officer Director
$0 $0 $0
Daniel Ordower Treasurer 5
Officer Director
$0 $0 $0
Michael Salad Director 5
Director
$0 $0 $0
Julie Lopez Director 5
Director
$0 $0 $0
Lauren Adams Director 5
Director
$0 $0 $0
Sankar Madhavan 5
Director
$0 $0 $0
Amanda Scheier Director 5
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 No data No data No data No data
2023 $283,786 $229,386 $668,547 $54,400
2022 $228,516 $224,596 $614,250 $3,920
2021 $286,093 $284,960 $616,097 $1,133
2020 $97,339 $278,421 $607,197 $-181,082
2019 $896,818 $122,037 $788,279 $774,781
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