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Source: IRS Form 990 via ProPublica Nonprofit Explorerⓘ Leadership data below reflects a more recent filing (Tax Year 2024) from the IRS e-file system.
Total Revenue
▼$9.6M
Total Contributions
$9.1M
Total Expenses
▼$7.4M
Total Assets
$42.9M
Total Liabilities
▼$5.9M
Net Assets
$37M
Officer Compensation
→$1.2M
Other Salaries
$731.5K
Investment Income
▼$497.6K
Fundraising
▼$0
Source: USAspending.gov · Searched by organization name
Total Federal Funding
$41M
Awards Found
8
| Awarding Agency | Description | Amount | Fiscal Year | Period |
|---|---|---|---|---|
| Department of Health and Human Services | INCREASING PUBLIC AWARENESS AND PROVIDER EDUCATION ABOUT PRIMARY IMMUNODEFICIENCY DISEASE | $9M | FY2023 | Aug 2023 – Jul 2028 |
| Department of Health and Human Services | INCREASING PUBLIC AWARENESS AND PROVIDER EDUCATION ABOUT PRIMARY IMMUNODEFICIENCY DISEASE | $9M | FY2017 | Aug 2017 – Jul 2023 |
| Department of Health and Human Services | PROVIDER EDUCATION AND PUBLIC AWARENESS ABOUT PRIMARY IMMUNODEFICIENCY | $8.4M | FY2005 | Aug 2005 – Sep 2011 |
| Department of Health and Human Services | SEVERE COMBINED IMMUNODEFICIENCY (SCID) NEWBORN SCREENING IMPLEMENTATION PROGRAM | $6.8M | FY2015 | May 2015 – Apr 2019 |
| Department of Health and Human Services | CONTINUING DEVELOPMENT AND ENHANCEMENT OF THE PHYSICIAN EDUCATION AND PUBLIC AWAR | $3.8M | FY2012 | Jul 2012 – Jul 2017 |
| Department of Health and Human Services | INCREASING PUBLIC AWARENESS AND PROVIDER EDUCATION ABOUT PRIMARY IMMUNODEFICIENCY DISEASE | $3.1M | FY2017 | Aug 2017 – Jul 2022 |
| Department of Health and Human Services | CONTINUING DEVELOPMENT AND ENHANCEMENT OF THE PHYSICIAN EDUCATION AND PUBLIC AWAR | $921.5K | FY2012 | Jul 2012 – Jul 2017 |
| Department of Health and Human Services | SEVERE COMBINED IMMUNODEFICIENCY (SCID) NEWBORN SCREENING IMPLEMENTATION PROGRAM | $0 | FY2015 | May 2015 – Apr 2019 |
Department of Health and Human Services
$9M
INCREASING PUBLIC AWARENESS AND PROVIDER EDUCATION ABOUT PRIMARY IMMUNODEFICIENCY DISEASE
Department of Health and Human Services
$9M
INCREASING PUBLIC AWARENESS AND PROVIDER EDUCATION ABOUT PRIMARY IMMUNODEFICIENCY DISEASE
Department of Health and Human Services
$8.4M
PROVIDER EDUCATION AND PUBLIC AWARENESS ABOUT PRIMARY IMMUNODEFICIENCY
Department of Health and Human Services
$6.8M
SEVERE COMBINED IMMUNODEFICIENCY (SCID) NEWBORN SCREENING IMPLEMENTATION PROGRAM
Department of Health and Human Services
$3.8M
CONTINUING DEVELOPMENT AND ENHANCEMENT OF THE PHYSICIAN EDUCATION AND PUBLIC AWAR
Department of Health and Human Services
$3.1M
INCREASING PUBLIC AWARENESS AND PROVIDER EDUCATION ABOUT PRIMARY IMMUNODEFICIENCY DISEASE
Department of Health and Human Services
$921.5K
CONTINUING DEVELOPMENT AND ENHANCEMENT OF THE PHYSICIAN EDUCATION AND PUBLIC AWAR
Department of Health and Human Services
$0
SEVERE COMBINED IMMUNODEFICIENCY (SCID) NEWBORN SCREENING IMPLEMENTATION PROGRAM
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
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 |
|---|---|---|---|---|---|
| 2023 | $9.6M | $9.1M | $7.4M | $42.9M | $37M |
| 2022 | $8.8M | $8.6M | $5.9M | $38.6M | $32.3M |
| 2021 | $6.1M | $3.9M | $5.3M | $36.1M | $35.8M |
| 2020 | $10.1M | $8.4M | $4.8M | $34.9M |
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 | PDF not yet published by IRSView Filing → |
| 2022 | 990 | DataIRS e-File |
Financial data: IRS Form 990 via ProPublica Nonprofit Explorer (Tax Year 2023)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Federal grants: USAspending.gov (live)
Organization info: IRS Business Master File · ProPublica Nonprofit Explorer
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Frederick Modell | President | 40 | $716.5K | $0 | $0 | $716.5K |
Frederick Modell
President
$716.5K
Hrs/Wk
40
Compensation
$716.5K
Related Orgs
$0
Other
$0
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Allyson Alan Galishoff | Director | 2 | $0 | $0 | $0 | $0 |
| Bettina Emden | Director | 2 | $0 | $0 | $0 | $0 |
| Brenda Gary Lavigna | Director | 2 | $0 | $0 | $0 | $0 |
| Carol James Randel | Director | 2 | $0 | $0 | $0 | $0 |
| Debbe Longo Strout | Director | 2 | $0 | $0 | $0 | $0 |
| Debbi Max Lebersfeld | Director |
Allyson Alan Galishoff
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Bettina Emden
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Brenda Gary Lavigna
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
| $34.9M |
| 2019 | $9.3M | $8.4M | $6.5M | $29.6M | $29.6M |
| 2018 | $7.4M | $6.9M | $7M | $25.3M | $25.3M |
| 2017 | $11.6M | $10.3M | $6.4M | $26.6M | $26.1M |
| 2016 | $9.6M | $9.3M | $6.8M | $22.2M | $20.9M |
| 2015 | $9M | $8.4M | $6.2M | $23M | $18.1M |
| 2014 | $5.9M | $5.1M | $6.4M | $18.9M | $16M |
| 2013 | $7.8M | $6.8M | $6.5M | $22.2M | $18.9M |
| 2012 | $9M | $7.9M | $3.8M | $20.9M | $17.6M |
| 2011 | $7M | $7.1M | $5.9M | $17.6M | $12.5M |
| 2021 | 990 | Data |
| 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 | — |
| 2 |
| $0 |
| $0 |
| $0 |
| $0 |
| Faisal Khalid | Overseer | 2 | $0 | $0 | $0 | $0 |
| Felice Axelrod | Director | 2 | $0 | $0 | $0 | $0 |
| Frann Eric Francis | Director | 2 | $0 | $0 | $0 | $0 |
| Gene Manheim | Director | 2 | $0 | $0 | $0 | $0 |
| Greg Smith | Director | 2 | $0 | $0 | $0 | $0 |
| Hassan Ahmed | Director | 2 | $0 | $0 | $0 | $0 |
| Helen Chaitman Esq | Director | 2 | $0 | $0 | $0 | $0 |
| Jason Shuman | Director | 2 | $0 | $0 | $0 | $0 |
| Jennifer Chaitman Dvm | Director | 2 | $0 | $0 | $0 | $0 |
| Jodi Pulice | Director | 2 | $0 | $0 | $0 | $0 |
| Jonathan Mechanic Esq | Director | 2 | $0 | $0 | $0 | $0 |
| Lisa Stephen Lawrence | Director | 2 | $0 | $0 | $0 | $0 |
| Lisa Stephen Shuman | Director | 2 | $0 | $0 | $0 | $0 |
| Lisa William Wexler | Director | 2 | $0 | $0 | $0 | $0 |
| Luciana Michael Solomon | Director | 2 | $0 | $0 | $0 | $0 |
| Lynn Manheim | Director | 2 | $0 | $0 | $0 | $0 |
| Michael Davidson | Director | 2 | $0 | $0 | $0 | $0 |
| Robbie Alan Franklinesq | Director | 2 | $0 | $0 | $0 | $0 |
| Ron Snyder | Director | 2 | $0 | $0 | $0 | $0 |
| Ryan G Smith | Director | 2 | $0 | $0 | $0 | $0 |
| Susan Barry Stein Md | Director | 2 | $0 | $0 | $0 | $0 |
| Taylor Smith | Director | 2 | $0 | $0 | $0 | $0 |
| Wendy Levine | Director | 2 | $0 | $0 | $0 | $0 |
Carol James Randel
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Debbe Longo Strout
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Debbi Max Lebersfeld
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Faisal Khalid
Overseer
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Felice Axelrod
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Frann Eric Francis
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Gene Manheim
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Greg Smith
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Hassan Ahmed
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Helen Chaitman Esq
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Jason Shuman
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Jennifer Chaitman Dvm
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Jodi Pulice
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Jonathan Mechanic Esq
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Lisa Stephen Lawrence
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Lisa Stephen Shuman
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Lisa William Wexler
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Luciana Michael Solomon
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Lynn Manheim
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Michael Davidson
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Robbie Alan Franklinesq
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Ron Snyder
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Ryan G Smith
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Susan Barry Stein Md
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Taylor Smith
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Wendy Levine
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0