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Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2023
Total Revenue
▼$1.6M
Program Spending
97%
of total expenses go to program services
Total Contributions
$887K
Total Expenses
▼$1.7M
Total Assets
$754.7K
Total Liabilities
▼$482.7K
Net Assets
$272K
Officer Compensation
→N/A
Other Salaries
$998.3K
Investment Income
$0
Fundraising
▼N/A
Source: USAspending.gov · Searched by organization name
Total Federal Funding
$19.3M
Awards Found
14
| Awarding Agency | Description | Amount | Fiscal Year | Period |
|---|---|---|---|---|
| Department of Health and Human Services | QUALITY ASSESSMENT OF THE NEWBORN SCREENING SYSTEM | $7M | FY2009 | Sep 2009 – Aug 2018 |
| Department of Health and Human Services | CONSUMER INITIATIVES FOR GENETIC RESOURCES AND SERVICES | $2.2M | FY2007 | Jun 2007 – May 2012 |
| Department of Health and Human Services | SINGLE GENE DISORDERS RESOURCE NETWORK | $2M | FY2005 | Sep 2005 – Sep 2011 |
| Department of Health and Human Services | NATIONAL GENETICS EDUCATION AND FAMILY SUPPORT CENTER | $2M | FY2017 | Jun 2017 – May 2024 |
| Department of Health and Human Services | NEWBORN SCREENING FAMILY EDUCATION PROGRAM | $1.7M | FY2018 | Sep 2018 – Aug 2023 |
| Department of Health and Human Services | TRANSLATING MEDICAL GENETICS INTO SERVICES | $1.2M | FY2009 | Sep 2009 – Aug 2013 |
| Department of Health and Human Services | NATIONAL GENETICS EDUCATION AND FAMILY SUPPORT CENTER | $800K | FY2017 | Jun 2017 – May 2020 |
| Department of Health and Human Services | CONSUMER INITIATIVES FOR GENETIC RESOURCES AND SERVICES | $685.6K | FY2007 | Jun 2007 – May 2010 |
| Department of Health and Human Services | CONSUMER INITIATIVES FOR GENETIC RESOURCES AND SERVICES | $600K | FY2006 | Jun 2006 – May 2010 |
| Department of Health and Human Services | CONSUMER INITIATIVES FOR GENETIC RESOURCES AND SERVICES | $489.6K | FY2007 | Jun 2007 – May 2010 |
| Department of Health and Human Services | NEWBORN SCREENING FAMILY EDUCATION PROGRAM | $400K | FY2018 | Sep 2018 – Aug 2023 |
| Department of Health and Human Services | CONFERENCE SUPPORT FOR GENETIC ALLIANCE | $213K | FY2009 | Jul 2009 – May 2012 |
| Department of Health and Human Services | BEYOND THE BLOODSPOT: HOW WILL EMERGING TECHNOLOGIES SHAPE DETECTION AND CLINICAL | $30K | FY2012 | Sep 2012 – Aug 2013 |
| Department of Health and Human Services | QUALITY ASSESSMENT OF THE NEWBORN SCREENING SYSTEM | $0 | FY2009 | Sep 2009 – Feb 2019 |
Department of Health and Human Services
$7M
QUALITY ASSESSMENT OF THE NEWBORN SCREENING SYSTEM
Department of Health and Human Services
$2.2M
CONSUMER INITIATIVES FOR GENETIC RESOURCES AND SERVICES
Department of Health and Human Services
$2M
SINGLE GENE DISORDERS RESOURCE NETWORK
Department of Health and Human Services
$2M
NATIONAL GENETICS EDUCATION AND FAMILY SUPPORT CENTER
Department of Health and Human Services
$1.7M
NEWBORN SCREENING FAMILY EDUCATION PROGRAM
Department of Health and Human Services
$1.2M
TRANSLATING MEDICAL GENETICS INTO SERVICES
Department of Health and Human Services
$800K
NATIONAL GENETICS EDUCATION AND FAMILY SUPPORT CENTER
Department of Health and Human Services
$685.6K
CONSUMER INITIATIVES FOR GENETIC RESOURCES AND SERVICES
Department of Health and Human Services
$600K
CONSUMER INITIATIVES FOR GENETIC RESOURCES AND SERVICES
Department of Health and Human Services
$489.6K
CONSUMER INITIATIVES FOR GENETIC RESOURCES AND SERVICES
Department of Health and Human Services
$400K
NEWBORN SCREENING FAMILY EDUCATION PROGRAM
Department of Health and Human Services
$213K
CONFERENCE SUPPORT FOR GENETIC ALLIANCE
Department of Health and Human Services
$30K
BEYOND THE BLOODSPOT: HOW WILL EMERGING TECHNOLOGIES SHAPE DETECTION AND CLINICAL
Department of Health and Human Services
$0
QUALITY ASSESSMENT OF THE NEWBORN SCREENING SYSTEM
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 |
|---|---|---|---|---|---|
| 2023IRS e-File | $1.6M | $887K | $1.7M | $754.7K | $272K |
| 2022 | $3.2M | $1.6M | $3.4M | $704.7K | $376K |
| 2021 | $2.3M | $1.2M | $2.5M | $1.2M | $486.7K |
| 2020 | $2.3M | $997.7K | $2.2M |
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 2023)
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 |
|---|
| Sharon F Terry | President/ceo | 40 | $49.2K | $0 | $200.8K | $250K |
Sharon F Terry
President/ceo
$250K
Hrs/Wk
40
Compensation
$49.2K
Related Orgs
$0
Other
$200.8K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Julia Ortega | Director | 1 | $0 | $0 | $0 | $0 |
| Kelly Edwards Phd | Director | 1 | $0 | $0 | $0 | $0 |
| Kemp Battle | Secretary | 1 | $0 | $0 | $0 | $0 |
| Ryan Taft | Director | 1 | $0 | $0 | $0 | $0 |
| Usama Malik | Director | 1 | $0 | $0 | $0 | $0 |
Julia Ortega
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Kelly Edwards Phd
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Kemp Battle
Secretary
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
| $1.2M |
| $609.7K |
| 2019 | $2.9M | $1M | $3.1M | $727.5K | $429.5K |
| 2018 | $4M | $1.1M | $3.9M | $961.6K | $560K |
| 2017 | $4.6M | $925.6K | $4.3M | $828K | $453K |
| 2016 | $3.7M | $1M | $3.8M | $423.3K | $157.6K |
| 2015 | $3.6M | $1.9M | $3.7M | $749.3K | $308.6K |
| 2014 | $2.6M | $987.4K | $3.1M | $610.4K | $433.6K |
| 2013 | $2.4M | $677.2K | $2.7M | $1.2M | $931K |
| 2012 | $2.8M | $1.8M | $2.8M | $1.4M | $1.3M |
| 2011 | $4.2M | $2.5M | $3.4M | $1.7M | $1.3M |
| 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 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
Ryan Taft
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Usama Malik
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0