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Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$10.1M
Program Spending
74%
of total expenses go to program services
Total Contributions
$9.6M
Total Expenses
▼$9.6M
Total Assets
$18.8M
Total Liabilities
▼$1.4M
Net Assets
$17.4M
Officer Compensation
→$520.1K
Other Salaries
$3.5M
Investment Income
$548.2K
Fundraising
▼N/A
Source: USAspending.gov · Searched by organization name
Total Federal Funding
$12.3M
Awards Found
3
| Awarding Agency | Description | Amount | Fiscal Year | Period | Link |
|---|---|---|---|---|---|
| Department of Health and Human Services | RESOURCES TO ASSIST INVESTIGATIONS IN PRIMARY IMMUNODEFICIENCY DISEASES (U24) | $6.4M | FY2010 | Apr 2010 – Mar 2022 | Open → |
| Department of Health and Human Services | SEVERE COMBINED IMMUNODEFICIENCY (SCID) SCREENING AND EDUCATION | $3.9M | FY2018 | Aug 2018 – Jul 2023 | Open → |
| Department of Health and Human Services | SEVERE COMBINED IMMUNODEFICIENCY (SCID) SCREENING AND EDUCATION | $2M | FY2018 | Aug 2018 – Jul 2020 | Open → |
Department of Health and Human Services
$6.4M
RESOURCES TO ASSIST INVESTIGATIONS IN PRIMARY IMMUNODEFICIENCY DISEASES (U24)
Department of Health and Human Services
$3.9M
SEVERE COMBINED IMMUNODEFICIENCY (SCID) SCREENING AND EDUCATION
Department of Health and Human Services
$2M
SEVERE COMBINED IMMUNODEFICIENCY (SCID) SCREENING AND EDUCATION
Source: Federal Audit Clearinghouse (fac.gov)
Total Audits
5
Clean Audits
4
Material Weakness
Yes
Noncompliance Issues
No
| Year | Status | Financial Report | Federal Expenditure | Low Risk | Accepted |
|---|---|---|---|---|---|
| 2022 | Material Weakness | Unmodified (Clean) | $993.8K | Yes | 2023-06-20 |
| 2021 | Clean | Unmodified (Clean) | $2.2M | Yes | 2022-06-28 |
| 2020 | Clean | Unmodified (Clean) | $1.3M | Yes | 2021-08-10 |
| 2019 | Clean | Unmodified (Clean) | $1.9M | No | 2020-09-23 |
| 2018 | Clean | Unmodified (Clean) | $881.6K | No | 2019-06-18 |
Financial Report
Unmodified (Clean)
Federal Expenditure
$993.8K
Financial Report
Unmodified (Clean)
Federal Expenditure
$2.2M
Financial Report
Unmodified (Clean)
Federal Expenditure
$1.3M
Financial Report
Unmodified (Clean)
Federal Expenditure
$1.9M
Financial Report
Unmodified (Clean)
Federal Expenditure
$881.6K
Tax Year 2024 · Source: IRS e-Filed Form 990
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2024IRS e-File | $10.1M | $9.6M | $9.6M | $18.8M | $17.4M |
| 2023 | $9M | $8.7M | $7.4M | $17.4M | $15.9M |
| 2022 | $8.9M | $8.7M | $7.9M | $14.6M | $13M |
| 2021 | $9.9M | $9.2M | $8M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
| Tax Year | Form Type | Source | Documents |
|---|---|---|---|
| 2024 | 990 | IRS e-File | PDF not yet published by IRSView Filing → |
| 2023 | 990 | DataIRS e-File | |
| 2022 | 990 | DataIRS e-File |
Financial data: IRS e-Filed Form 990 (Tax Year 2024)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Federal grants: USAspending.gov (live)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Jorey Berry | President & | 40 | $292K | $0 | $55.3K | $347.3K |
| Sarah Rose | CFO | 40 | $148K | $0 | $24.8K | $172.8K |
| Tracy A Shaw | Board Chair | 1 | $0 | $0 | $0 | $0 |
| Sonia Vohnout | Board Secret | 1 | $0 | $0 | $0 | $0 |
| Seth Kaufman | Board Vice C | 1 | $0 | $0 | $0 | $0 |
Jorey Berry
President &
$347.3K
Hrs/Wk
40
Compensation
$292K
Related Orgs
$0
Other
$55.3K
Sarah Rose
CFO
$172.8K
Hrs/Wk
40
Compensation
$148K
Related Orgs
$0
Other
$24.8K
Tracy A Shaw
Board Chair
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Sonia Vohnout
Board Secret
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Seth Kaufman
Board Vice C
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Aimee Simpson | VP Instituti | 40 | $157.9K | $0 | $20.1K | $177.9K |
| Brian Lloyd | CTO | 40 | $143.9K | $0 | $28.7K | $172.6K |
| Tammy Black | VP Communica | 40 | $151.7K | $0 | $19.1K | $170.7K |
| Lynn Albizo | VP Public Po | 40 | $142.6K | $0 | $23K | $165.6K |
| Christopher Duckett | Director Of | 40 | $126.7K | $0 | $29.6K | $156.3K |
Aimee Simpson
VP Instituti
$177.9K
Hrs/Wk
40
Compensation
$157.9K
Related Orgs
$0
Other
$20.1K
Brian Lloyd
CTO
$172.6K
Hrs/Wk
40
Compensation
$143.9K
Related Orgs
$0
Other
$28.7K
Tammy Black
VP Communica
$170.7K
Hrs/Wk
40
Compensation
$151.7K
Related Orgs
$0
Other
$19.1K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Adrian Mollo | Trustee | 1 | $0 | $0 | $0 | $0 |
| Andy Robins | Trustee | 1 | $0 | $0 | $0 | $0 |
| Charlene Grabowski | Trustee | 1 | $0 | $0 | $0 | $0 |
| Colleen Dansereau | Trustee | 1 | $0 | $0 | $0 | $0 |
| Jason Angelos | Finance Chai | 1 | $0 | $0 | $0 | $0 |
| Kate Sullivan Md | Mac Chair |
Adrian Mollo
Trustee
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Andy Robins
Trustee
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Charlene Grabowski
Trustee
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
| $14.3M |
| $13.8M |
| 2020 | $6.8M | $6.5M | $6.5M | $12.4M | $11.4M |
| 2019 | $9.5M | $8.9M | $8.6M | $11.5M | $10.6M |
| 2018 | $6.4M | $5.3M | $6.4M | $9.3M | $8.7M |
| 2017 | $8.3M | $7.3M | $8.3M | $10.2M | $9.6M |
| 2016 | $7.6M | $7.9M | $6.9M | $9.4M | $9.1M |
| 2015 | $8M | $8.2M | $8M | $8.7M | $8.2M |
| 2014 | $7.1M | $7M | $6M | $9M | $8.5M |
| 2013 | $6.5M | $6.4M | $5.9M | $7.9M | $7.6M |
| 2012 | $5.8M | $5.6M | $4.6M | $7M | $6.8M |
| 2011 | $6.1M | $5.9M | $5.7M | $5.7M | $5.5M |
| 2021 | 990 | Data | PDF not yet published by IRS |
| 2020 | 990 | Data | PDF not yet published by IRS |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data | PDF not yet published by IRS |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
Lynn Albizo
VP Public Po
$165.6K
Hrs/Wk
40
Compensation
$142.6K
Related Orgs
$0
Other
$23K
Christopher Duckett
Director Of
$156.3K
Hrs/Wk
40
Compensation
$126.7K
Related Orgs
$0
Other
$29.6K
| 1 |
| $0 |
| $0 |
| $0 |
| $0 |
| Pete Atherton | Futures Chai | 1 | $0 | $0 | $0 | $0 |
| Peter Wang | Trustee | 1 | $0 | $0 | $0 | $0 |
| Stella Safo | Trustee | 1 | $0 | $0 | $0 | $0 |
Colleen Dansereau
Trustee
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Jason Angelos
Finance Chai
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Kate Sullivan Md
Mac Chair
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Pete Atherton
Futures Chai
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Peter Wang
Trustee
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Stella Safo
Trustee
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0