Asxl Rare Research Endowment Foundation logo

Asxl Rare Research Endowment Foundation

Grantmaker Gorham, ME EIN: 82-3890665 Website

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

Key facts about Asxl Rare Research Endowment Foundation

In short: Asxl Rare Research Endowment Foundation gave $179K across 3 grants in 2024 (avg $60K), mostly in Maryland. Source: 2024 IRS Form 990 filing.

EIN
82-3890665
Latest 990 filing
Form 990 filing, 2024
Annual giving (2024)
$179,341
Grants made (2024)
3
Average grant
$59,780
Median grant
$50,000
Total assets
$1,081,250
Primary geography
Maryland (67% of itemized 2024 grant dollars)

Data from IRS Form 990 filing, 2024; updated September 2026.

Financial Overview

From 2024 IRS Form 990 filing · View filing

Total Assets

$1.1M

+61.7% YoY

Annual Giving

$179K

Grant Count

3

Avg Grant Size

$60K

How Asxl Rare Research Endowment Foundation gives

  • Giving grew 226% from 2021 to 2024. Method

From the foundation's IRS Form 990 filings. Methodology.

About Asxl Rare Research Endowment Foundation

Based on IRS filings

Asxl Rare Research Endowment Foundation is a nonprofit organization 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

Open Grants

1 open opportunity from Asxl Rare Research Endowment Foundation

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

4states

Share of all 3 itemized 2024 grant dollars.

Cities

BaltimoreDoylestownHoustonLos Angeles

Giving Over Time

Total grant dollars and number of grants per year

$0$50K$100K$150K$200K2 grants20201 grants20211 grants20220 grants20233 grants2024

From 2020 to 2024, annual grant giving ranged from $55K (2021) to $179K (2024). In 2024 it made 3 grants totaling $179K.

Grant Insights

How this funder distributes its grants

Top Recipients

Top 3 recipients in 2024

Kennedy Krieger Institute: $119KKennedy Krieger Institute$119KRegents University of California Los Angeles: $50KRegents University ofCalifornia Los Angeles$50KUplifting Athletes Inc: $10KUplifting Athletes Inc$10K

The largest 2024 recipient was Kennedy Krieger Institute ($119K). Together the top 3 received $179K.

Grant Size Distribution

7 grants across all recorded years

1<$50K5$50–100K1$100–250K$250–500K$500K–1M$1–5M$5M+

The most common grant size was in the $50–100K range: 5 grants of 7 (71%).

Giving History

Grant recipients and amounts by year

RecipientPurposeAmount
Kennedy Krieger Institute Baltimore, MDSupport for various studies regarding outcome measurements and research priorities$119,341
Regents University of California Los Angeles Los Angeles, CASupport for the ASXL Registry and Biobank held at UCLA$50,000
Uplifting Athletes Inc Doylestown, PASupport of Young Investigators award$10,000

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Net Investment Income
$0$250K$500K$750K$1M20202021202220232024
Metric202420232022
Total Assets$1,081,250$668,547$614,250
Revenue$887,604$283,786$228,516
Expenses$474,919$229,386$224,596
Qualifying Distributions———
Net Investment Income$24,147$518$175
Distributable Amount———

Data update history

When this profile's IRS filing data changed on Grantable

  1. IRS filings on file for fiscal years 2020–2024

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

Amanda Johnson — Executive Director: $106KAmanda JohnsonExecutive Director$106K

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 filing.

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 filing.

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 filing 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 filing 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 filing. Its revenue that year was $888K.

What is Asxl Rare Research Endowment Foundation?

Asxl Rare Research Endowment Foundation is a nonprofit organization 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.

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