Asxl Rare Research Endowment Foundation
Support research and education that lead to improved quality of life for individuals with ASXL syndromes.
Asxl Rare Research Endowment Foundation at a glance
In short: Asxl Rare Research Endowment Foundation gave $179K across 3 grants in 2024 (avg $60K), mostly in Maryland. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $179,341
- +204.0% vs 2023
- Grants made (2024)
- 3
- Average grant
- $59,780
- Median grant
- $50,000
- Total assets
- $1,081,250
- +61.7% vs 2023
- Primary geography
- Maryland (67% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
How to apply to Asxl Rare Research Endowment Foundation
Open Grants
1 open opportunity from Asxl Rare Research Endowment Foundation
Who Asxl Rare Research Endowment Foundation funds
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2024
The largest 2024 recipient was Kennedy Krieger Institute ($119K). Together the top 3 received $179K.
Grant Size Distribution
7 grants across all recorded years
The most common grant size was in the $50–100K range: 5 grants of 7 (71%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 3 itemized grants.
Cities
How Asxl Rare Research Endowment Foundation gives
- Giving grew 226% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $55K (2021) to $179K (2024). In 2024 it made 3 grants totaling $179K.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Kennedy Krieger Institute Baltimore, MD | Support for various studies regarding outcome measurements and research priorities | $119,341 |
| Regents University of California Los Angeles Los Angeles, CA | Support for the ASXL Registry and Biobank held at UCLA | $50,000 |
| Uplifting Athletes Inc Doylestown, PA | Support of Young Investigators award | $10,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $1,081,250 | $887,604 | $474,919 | $179,341 | 3 | $24,147 |
| 2023 | $668,547 | $283,786 | $229,386 | $59,000 | Total only | $518 |
| 2022 | $614,250 | $228,516 | $224,596 | $61,205 | 1 | $175 |
| 2021 | $616,097 | $286,093 | $284,960 | $55,000 | 1 | $453 |
| 2020 | $607,197 | $97,339 | $278,421 | $110,000 | 2 | $1,953 |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About Asxl Rare Research Endowment Foundation
Based on IRS filings
Asxl Rare Research Endowment Foundation is a public charity focused on Medical Research, based in Gorham, ME. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $1.1M in total assets. In 2024, it awarded 3 grants totaling $179K. Net investment income was $24K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Asxl Rare Research Endowment Foundation is led by Amanda Johnson, Executive Director since 2022 (on filings since 2021); 1 of 8 officers listed in 2024 is compensated.
Officers on the 2024 filing
Amanda Johnson
Executive Director
Chief Development Officer → Executive Director, 2022
On filings since 2021
40 hrs/week
$100K (2021) → $106K (2024)
Laura Badmaev
President
On filings since 2020
5 hrs/week
No compensation reported
Julie Lopez
Director
On filings since 2021
5 hrs/week
No compensation reported
Michael Salad
Director
On filings since 2021
5 hrs/week
No compensation reported
Amanda Scheirer
Director
On filings since 2023
5 hrs/week
No compensation reported
Lauren Adams
Director
On filings since 2023
5 hrs/week
No compensation reported
Sankar Madhavan
Director
New on the 2024 filing
5 hrs/week
No compensation reported
Daniel Ordower
Treasurer
On filings since 2021
5 hrs/week
No compensation reported
Former officers (5)
- Former: Sankar (2023) — Madhavan
- Former: Melissa Farmer Richards (2020–2022) — Director
- Former: Bianca Russell (2020–2021) — Director
- Former: Wen-Hann Tan (2020–2021) — Director
- Former: Jeanette Troiola (2020) — Director
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $106K, to Amanda Johnson (Executive Director).
Frequently asked questions about Asxl Rare Research Endowment Foundation
How much does Asxl Rare Research Endowment Foundation give each year?
Asxl Rare Research Endowment Foundation gave $179K across 3 grants in 2024, according to its 2024 IRS Form 990. In 2023 it reported $59K in grants paid.
What is Asxl Rare Research Endowment Foundation's typical grant size?
Asxl Rare Research Endowment Foundation's median grant in 2024 was $50,000, and its average grant was $59,780, across 3 grants on its 2024 IRS Form 990.
Where does Asxl Rare Research Endowment Foundation give grants?
Asxl Rare Research Endowment Foundation gives mostly in Maryland: 67% of the grant dollars itemized on its 2024 IRS Form 990 went to recipients there. The next largest states were California (28%) and Pennsylvania (6%).
Does Asxl Rare Research Endowment Foundation give general operating support?
Not in 2024: none of the 3 grants with a stated purpose on Asxl Rare Research Endowment Foundation's 2024 IRS Form 990 were described as general or operating support.
How large is Asxl Rare Research Endowment Foundation?
Asxl Rare Research Endowment Foundation reported $1.1M in total assets on its 2024 IRS Form 990. Its revenue that year was $888K.
What is Asxl Rare Research Endowment Foundation?
Asxl Rare Research Endowment Foundation is a public charity focused on Medical Research, based in Gorham, ME. It holds $1.1M in total assets as of 2024.
What is Asxl Rare Research Endowment Foundation's EIN?
Asxl Rare Research Endowment Foundation's EIN (Employer Identification Number) is 82-3890665. IRS Form 990 filing data is available on this page for 2020–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS November 14, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 15, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 2, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 12, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 13, 2025)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Asxl Rare Research Endowment Foundation funds
Medical Research Open opportunities, soonest deadline first.
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