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Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2023
Total Revenue
▼$1.8M
Program Spending
63%
of total expenses go to program services
Total Contributions
$1.5M
Total Expenses
▼$835.6K
Total Assets
$4.4M
Total Liabilities
▼$485.3K
Net Assets
$3.9M
Officer Compensation
→$39.3K
Other Salaries
$5,198
Investment Income
$323.8K
Fundraising
▼N/A
Source: USAspending.gov · Searched by organization name
Total Federal Funding
$16.5M
Awards Found
6
| Awarding Agency | Description | Amount | Fiscal Year | Period |
|---|---|---|---|---|
| Department of Health and Human Services | HERITABLE DISORDERS | $6M | FY2012 | Jun 2012 – May 2017 |
| Department of Health and Human Services | NATIONAL COORDINATING CENTER (NCC) FOR THE REGIONAL GENETIC NETWORKS | $4M | FY2017 | Jun 2017 – Nov 2024 |
| Department of Health and Human Services | HERITABLE DISORDERS | $3.7M | FY2004 | Sep 2004 – May 2012 |
| Department of Health and Human Services | NATIONAL COORDINATING CENTER (NCC) FOR THE REGIONAL GENETIC NETWORKS | $1.6M | FY2017 | Jun 2017 – May 2020 |
| Department of Health and Human Services | LONG-TERM FOLLOW-UP FOR SCID AND OTHER NBS CONDITIONS | $1.1M | FY2021 | Aug 2021 – Jul 2024 |
| Department of Health and Human Services | HERITABLE DISORDERS | -$18.2K | FY2012 | Jun 2012 – Jan 2018 |
Department of Health and Human Services
$6M
HERITABLE DISORDERS
Department of Health and Human Services
$4M
NATIONAL COORDINATING CENTER (NCC) FOR THE REGIONAL GENETIC NETWORKS
Department of Health and Human Services
$3.7M
HERITABLE DISORDERS
Department of Health and Human Services
$1.6M
NATIONAL COORDINATING CENTER (NCC) FOR THE REGIONAL GENETIC NETWORKS
Department of Health and Human Services
$1.1M
LONG-TERM FOLLOW-UP FOR SCID AND OTHER NBS CONDITIONS
Department of Health and Human Services
-$18.2K
HERITABLE DISORDERS
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 2023 · 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: SOUNK
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2023IRS e-File | $1.8M | $1.5M | $835.6K | $4.4M | $3.9M |
| 2022 | $1.4M | $1.3M | $758.6K | $3.4M | $2.9M |
| 2021 | $1.6M | $1.5M | $702K | $4.1M | $2.7M |
| 2020 | $982.3K | $905.4K |
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 | IRS 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 2023)
Federal grants: USAspending.gov (live)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Melanie Wells | COO Then CEO (effective Apr. 2023) | 3.8 | $295.9K | $0 | $18.2K | $314.2K |
| Nancy J Mendelsohn | President | 3 | $0 | $0 | $0 | $0 |
| Bruce Korf | Immediate Past President | 1 | $0 | $0 | $0 | $0 |
Melanie Wells
COO Then CEO (effective Apr. 2023)
$314.2K
Hrs/Wk
3.8
Compensation
$295.9K
Related Orgs
$0
Other
$18.2K
Nancy J Mendelsohn
President
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Bruce Korf
Immediate Past President
$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 |
|---|---|---|---|---|---|---|
| Lynn Fleisher | Legal Counsel | 1 | $210K | $0 | $0 | $210K |
Lynn Fleisher
Legal Counsel
$210K
Hrs/Wk
1
Compensation
$210K
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 |
|---|---|---|---|---|---|---|
| Alex Rajkovic | Director | 1 | $0 | $0 | $0 | $0 |
| Brynn Levy | Director | 1 | $0 | $0 | $0 | $0 |
| David Tilstra | Director | 1 | $0 | $0 | $0 | $0 |
| David Whiteman | Director | 1 | $0 | $0 | $0 | $0 |
| Evan Jones | Director | 1 | $0 | $0 | $0 | $0 |
| Marc Williams | Ex-officio Representative |
Alex Rajkovic
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Brynn Levy
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
David Tilstra
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
| $908.1K |
| $3.2M |
| $1.6M |
| 2019 | $869.8K | $790.7K | $1.3M | $2.1M | $1.4M |
| 2018 | $646.3K | $582.6K | $949.8K | $2.5M | $1.8M |
| 2017 | $730.5K | $678.7K | $1M | $3M | $2.1M |
| 2016 | $2.6M | $2.6M | $742.3K | $3.3M | $2.4M |
| 2015 | $1.1M | $1M | $1.2M | $1.1M | $514.8K |
| 2014 | $778.4K | $749.9K | $1.1M | $1.1M | $629.8K |
| 2013 | $770.7K | $859.8K | $815.9K | $1.4M | $937.1K |
| 2012 | $1.5M | $1.4M | $778.5K | $1.1M | $950.4K |
| 2011 | $761.1K | $745.5K | $943.1K | $454.4K | $260.9K |
| 2010 | $1M | $1M | $1M | $713.7K | $444.2K |
| 2021 | 990 | Data |
| 2020 | 990 | Data | PDF not yet published by IRS |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | Data |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| 1 |
| $0 |
| $0 |
| $0 |
| $0 |
| Matt Rabinowitz | Director | 1 | $0 | $0 | $0 | $0 |
| Mira Irons | Ex-officio Representative | 1 | $0 | $0 | $0 | $0 |
| Nadhuri Hegde | Director | 1 | $0 | $0 | $0 | $0 |
| Nasha Fitter | Director | 1 | $0 | $0 | $0 | $0 |
| Rong Mao | Director | 1 | $0 | $0 | $0 | $0 |
| Sarah Elsea | Director | 1 | $0 | $0 | $0 | $0 |
| Sucheta Bhatt | Director | 1 | $0 | $0 | $0 | $0 |
| Susan Klugman | Ex-officio Representative | 1 | $0 | $0 | $0 | $0 |
David Whiteman
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Evan Jones
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Marc Williams
Ex-officio Representative
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Matt Rabinowitz
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Mira Irons
Ex-officio Representative
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Nadhuri Hegde
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Nasha Fitter
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Rong Mao
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Sarah Elsea
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Sucheta Bhatt
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Susan Klugman
Ex-officio Representative
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0