Asxl Rare Research Endowment Foundation
Donations deductibleRevenue
$888k
year to 31 December 2024
Expenses
$475k
year to 31 December 2024
Total assets
$1.1m
$1k liabilities
Net assets
$1.1m
assets less liabilities
Directors and trustees
7
4.4 years on average
Staff
2
20 volunteers
Left since last filing
0
no seats appear to have opened
Officers and senior staff
2
named in Part VII
Asxl Rare Research Endowment Foundation's network
7 peoplei7 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (7). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.The board
7 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations.Time served and departures are observed across annual filings. Observed time served is a lower bound - a member may have joined before the first year on record. The organisation reported 5 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Amanda Scheier | Director | 2023 | 3 yrs |
| Daniel Ordower | Treasurer | 2022 | 4 yrs |
| Julie Lopez | Director | 2022 | 4 yrs |
| Laura Badmaev | President | 2019 | 7 yrs |
| Lauren Adams | Director | 2023 | 3 yrs |
| Michael Salad | Director | 2022 | 4 yrs |
| Sankar | Madhavan | 2023 | 3 yrs |
Under 5 years5 to 6 years6 years or more
Officers and senior leadership
2 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.| Name | Title as filed | On the filings |
|---|---|---|
| Amanda Johnson | Executive Director | since 2022 |
| Laura Badmaev | President | 2020 |
Pay and hours
year to 31 December 2024iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Amanda Johnson | Executive Director | 40 | $106k | ||
| Laura Badmaev | President | 5 | $0 | ||
| Daniel Ordower | Treasurer | 5 | $0 | ||
| Michael Salad | Director | 5 | $0 | ||
| Julie Lopez | Director | 5 | $0 | ||
| Lauren Adams | Director | 5 | $0 | ||
| Sankar Madhavan | Director | 5 | $0 | ||
| Amanda Scheirer | Director | 5 | $0 |
About
- Legal name
- Asxl Rare Research Endowment Foundation
- EIN
- 823890665
- Address
- 47 Old Dynamite Way, Gorham, ME, 04038-1573
- State
- Maine
- Mission
- Support research and education that lead to improved quality of life for individuals with ASXL syndromes. (as filed on the Form 990)
- Activity (NTEE)
- H12 Medical research
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Medical Research
- Size band
- 6 (IRS master file code)
- Formed
- 2018
- Principal officer
- Amanda Johnson (as named on the Form 990)
- IRS ruling date
- 1 May 2018
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 4, latest 2023
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥7years on the filingsLaura Badmaev
≥4years on the filingsDaniel Ordower
≥4years on the filingsJulie Lopez
≥4years on the filingsMichael Salad
Latest return
year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.- Total assets
- $1.1m
- Total liabilities
- $1k
- Net assets or fund balances
- $1.1m
- Contributions and grants received
- $854k
- Program service revenue
- $9k
- Grants and similar paid out
- $235k
- Employees
- 2
- Volunteers
- 20
Grants paid
3 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.| Recipient | Purpose | Amount |
|---|---|---|
| Kennedy Krieger Institute | Support for various studies regarding outcome measurements and research priorities | $119k |
| Regents University of California Los Angeles | Support for the ASXL Registry and Biobank held at UCLA | $50k |
| Uplifting Athletes Inc | Support of Young Investigators award | $10k |