- Revenue 2024
- $887,604
- Expenses 2024
- $474,919
Program services were 79.5% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- NTEE code
- H12
- Classification
- 1000
- Street
- 47 OLD DYNAMITE WAY
These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).
Officers and directors · 2024
As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.
-
Amanda Johnson
Executive Director
- Total calculated
- $105,900
- From this org
- $105,900
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
-
Laura Badmaev
President
- Total calculated
- $0
- Hours/week
- 5
-
Daniel Ordower
Treasurer
- Total calculated
- $0
- Hours/week
- 5
-
Michael Salad
Director
- Total calculated
- $0
- Hours/week
- 5
-
Julie Lopez
Director
- Total calculated
- $0
- Hours/week
- 5
-
Lauren Adams
Director
- Total calculated
- $0
- Hours/week
- 5
-
Sankar Madhavan
Director
- Total calculated
- $0
- Hours/week
- 5
-
Amanda Scheirer
Director
- Total calculated
- $0
- Hours/week
- 5
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.
Filings
-
2024
- Revenue
- $887,604
- Expenses
- $474,919
- Contributions
- $854,303
- Grants paid
- $234,500
-
2023
- Revenue
- $283,786
- Expenses
- $229,386
- Contributions
- $262,982
- Grants paid
- $64,616
-
2022
- Revenue
- $228,516
- Expenses
- $224,596
- Contributions
- $222,568
- Grants paid
- $67,322
The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.
Grants made
-
$119,341
2024 Support for various studies regarding outcome measurements and research priorities
-
2022 Project Title: Molecular and clinical biomarker development for Bohring-Opitz Syndrome year 2 funding
-
2024 Support for the ASXL Registry and Biobank held at UCLA
-
$10,000
2024 Support of Young Investigators award
Grants received
-
DONOR ADVISED CHARITABLE GIVING
$27,408
2022 HEALTH
-
$26,293
2024 GENERAL SUPPORT
-
DONOR ADVISED CHARITABLE GIVING
$20,757
2024 HEALTH
-
$14,924
2023
-
2023 For grant recipient's exempt purposes
-
2024 GENERAL SUPPORT
-
2024 Develop family-friendly materials about ASXL-related disorders that newly diagnosed families can understand from published research.
-
2023 HEALTH
-
2023 GENERAL SUPPORT
-
2025 GENERAL SUPPORT
The 10 largest by cash amount. The API serves every itemized grant.
Other IRS files
Auto-Revocation List
Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.
Publication 78
Listed as of 10 September 2026, under deductibility PC.
These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.