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The Foundation is dedicated to the early diagnosis, treatment and ultimate cure of Primary Immunodeficiency Diseases. The Foundations primary mission is supporting basic and clinical research, physician education, patient support, public awareness, advocacy and newborn screening. The Foundation generates support through contributions from the general public, industry, and government agencies. The Foundation sponsors physician symposia, conferences, educational events for physicians and patients, and awareness programs to reach the public.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$10.2M
Program Spending
92%
of total expenses go to program services
Total Contributions
$8.8M
Total Expenses
▼$9.3M
Total Assets
$46M
Total Liabilities
▼$6.3M
Net Assets
$39.8M
Officer Compensation
→$1.7M
Other Salaries
$851.7K
Investment Income
$1.4M
Fundraising
▼N/A
Tax Year 2024 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $1.1M
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
COLUMBIA UNIVERSITY | NEW YORK, NY | $181K | Cash | RESEARCH |
NEW YORK UNIVERSITY | NEW YORK, NY | $155K | Cash | RESEARCH |
BOSTON CHILDRENS HOSPITAL | BOSTON, MA | $75K | Cash | RESERACH |
UCLA MEDICAL SCIENCE DEV | LOS ANGELES, CA | $62.5K | Cash | RESEARCH |
TEXAS CHILDRENS HOSPITAL | HOUSTON, TX | $50K | Cash | RESEARCH |
INDIVIDUAL SMALL GRANTS | NEW YORK, NY | $47.2K | Cash | RESEARCH |
JOHNS HOPKINS UNIVERSITY | BALTIMORE, MD | $41.8K | Cash | RESEARCH |
CHILDRENS HOSP-PHILADELPHIA | PHILADELPHIA, PA | $35K | Cash | RESEARCH |
CLINIC FOR SPECIAL CHILDREN | GORDONVILLE, PA | $33K | Cash | RESEARCH |
ALL CHILDRENS HOSPITAL | ST PETERSBURG, FL | $25K | Cash | RESEARCH |
DUKE UNIV SCHOOL OF MED | DURHAM, NC | $25K | Cash | RESEARCH |
UNIV OF TEXAS SW MED CTR | DALLAS, TX | $25K | Cash | RESEARCH |
UNIVERSITY OF MIAMI ADV | MIAMI, FL | $25K | Cash | RESEARCH |
UNIVERSITY OF PITTBURGH | PITTSBURGH, PA | $25K | Cash | RESEARCH |
UNIVERSITY OF SOUTH FLORIDA | TAMPA, FL | $25K | Cash | RESEARCH |
YALE UNIVERSITY | NEW HAVEN, CT | $25K | Cash | RESEARCH |
CHILDRENS NATL MEDICAL CTR | WASHINGTON, DC | $25K | Cash | RESEARCH |
MEDICAL COLLEGE OF WISCONSIN | MILWAUKEE, WI | $25K | Cash | RESEARCH |
REGENTS OF UC IRVINE | IRVINE, CA | $25K | Cash | RESEARCH |
SAINT LOUIS UNIVERSITY | ST LOUIS, MO | $25K | Cash | RESEARCH |
SEATTLE CHILDRENS RESEARCH | SEATTLE, WA | $25K | Cash | RESEARCH |
ST JUDES CHILDRENS HOSPITAL | NEW YORK, NY | $25K | Cash | RESEARCH |
ST LOUIS CHILDRENS HOSP | ST LOUIS, MO | $25K | Cash | RESEARCH |
CHILDRENS HOSP OF CHICAGO | CHICAGO, IL | $25K | Cash | RESEARCH |
MEDICAL UNIV- SOUTH CAROLINA | CHARLESTON, SC | $25K | Cash | RESEARCH |
CHILDRENS HOSP-COLO FOUND | AURORA, CO | $25K | Cash | RESEARCH |
JOHNS HOPKINS ALL-CHILD HOSP | ST PETERSBURG, FL | $16.8K | Cash | RESEARCH |
UNIVERSITY OF SAN DIEGO | SAN DIEGO, CA | $15K | Cash | RESEARCH |
HARVARD IMMUNOLOGY PHD PROG | BOSTON, MA | $12.5K | Cash | RESEARCH |
| Total | $1.1M | |||
COLUMBIA UNIVERSITY
NEW YORK, NY
$181K
NEW YORK UNIVERSITY
NEW YORK, NY
$155K
BOSTON CHILDRENS HOSPITAL
BOSTON, MA
$75K
UCLA MEDICAL SCIENCE DEV
LOS ANGELES, CA
$62.5K
TEXAS CHILDRENS HOSPITAL
HOUSTON, TX
$50K
INDIVIDUAL SMALL GRANTS
NEW YORK, NY
$47.2K
JOHNS HOPKINS UNIVERSITY
BALTIMORE, MD
$41.8K
CHILDRENS HOSP-PHILADELPHIA
PHILADELPHIA, PA
$35K
CLINIC FOR SPECIAL CHILDREN
GORDONVILLE, PA
$33K
ALL CHILDRENS HOSPITAL
ST PETERSBURG, FL
$25K
DUKE UNIV SCHOOL OF MED
DURHAM, NC
$25K
UNIV OF TEXAS SW MED CTR
DALLAS, TX
$25K
UNIVERSITY OF MIAMI ADV
MIAMI, FL
$25K
UNIVERSITY OF PITTBURGH
PITTSBURGH, PA
$25K
UNIVERSITY OF SOUTH FLORIDA
TAMPA, FL
$25K
YALE UNIVERSITY
NEW HAVEN, CT
$25K
CHILDRENS NATL MEDICAL CTR
WASHINGTON, DC
$25K
MEDICAL COLLEGE OF WISCONSIN
MILWAUKEE, WI
$25K
REGENTS OF UC IRVINE
IRVINE, CA
$25K
SAINT LOUIS UNIVERSITY
ST LOUIS, MO
$25K
SEATTLE CHILDRENS RESEARCH
SEATTLE, WA
$25K
ST JUDES CHILDRENS HOSPITAL
NEW YORK, NY
$25K
ST LOUIS CHILDRENS HOSP
ST LOUIS, MO
$25K
CHILDRENS HOSP OF CHICAGO
CHICAGO, IL
$25K
MEDICAL UNIV- SOUTH CAROLINA
CHARLESTON, SC
$25K
CHILDRENS HOSP-COLO FOUND
AURORA, CO
$25K
JOHNS HOPKINS ALL-CHILD HOSP
ST PETERSBURG, FL
$16.8K
UNIVERSITY OF SAN DIEGO
SAN DIEGO, CA
$15K
HARVARD IMMUNOLOGY PHD PROG
BOSTON, MA
$12.5K
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 990Schedule J available
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 | $10.2M | $8.8M | $9.3M | $46M | $39.8M |
| 2023IRS e-File | $9.6M | $9.1M | $7.4M | $42.9M | $37M |
| 2022 | $8.8M | $8.6M | $5.9M | $38.6M | $32.3M |
| 2021 | $6.1M |
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 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 |
|---|
| 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
| $3.9M |
| $5.3M |
| $36.1M |
| $35.8M |
| 2020 | $10.1M | $8.4M | $4.8M | $34.9M | $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