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Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$4.8M
Program Spending
86%
of total expenses go to program services
Total Contributions
$3.8M
Total Expenses
▼$5.5M
Total Assets
$5.3M
Total Liabilities
▼$338.1K
Net Assets
$5M
Officer Compensation
→$194.4K
Other Salaries
$966.5K
Investment Income
$261.3K
Fundraising
▼$691.4K
Source: USAspending.gov · Searched by organization name
Total Federal Funding
$704.4K
Awards Found
3
| Awarding Agency | Description | Amount | Fiscal Year | Period |
|---|---|---|---|---|
| Department of Health and Human Services | EDUCATION AND PUBLIC AWARENESS FOR THE NEURODEVELOPMENTAL DISORDER RETT SYNDROM | $381.4K | FY2008 | Sep 2008 – Sep 2011 |
| Department of Health and Human Services | NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES DIRECTED SOURCE | $180K | FY2010 | Sep 2010 – Aug 2011 |
| Department of Health and Human Services | EDUCATION AND PUBLIC AWARENESS FOR THE NEURODEVELOPMENTAL DISORDER RETT SYNDROME | $143K | FY2009 | Sep 2009 – Sep 2010 |
Department of Health and Human Services
$381.4K
EDUCATION AND PUBLIC AWARENESS FOR THE NEURODEVELOPMENTAL DISORDER RETT SYNDROM
Department of Health and Human Services
$180K
NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES DIRECTED SOURCE
Department of Health and Human Services
$143K
EDUCATION AND PUBLIC AWARENESS FOR THE NEURODEVELOPMENTAL DISORDER RETT SYNDROME
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 |
|---|---|---|---|---|---|
| 2024IRS e-File | $4.8M | $3.8M | $5.5M | $5.3M | $5M |
| 2023 | $4.9M | $3.6M | $3.7M | $6.3M | $5.9M |
| 2022 | $3.7M | $3.6M | $5.5M | $6.4M | $4.5M |
| 2021 | $4.1M | $4M | $4.1M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
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 |
|---|
| Melissa Kennedy - Exit 1224 | Chief Executive Officer | 40 | $186.9K | $0 | $2,279 | $189.2K |
| Leslie Mehta Esq | Interim Chief Executive Officer | 0.5 | $5,208 | $0 | $0 | $5,208 |
| Steve Wood | Vice Chairman | 0.5 | $0 | $0 | $0 | $0 |
| David Pass Pharmd | Chairman | 1 | $0 | $0 | $0 | $0 |
| Mitch Bleske | Treasurer | 1 | $0 | $0 | $0 | $0 |
| Gordon Rich | Founding Seat - Non Voting | 0.5 | $0 | $0 | $0 | $0 |
Melissa Kennedy - Exit 1224
Chief Executive Officer
$189.2K
Hrs/Wk
40
Compensation
$186.9K
Related Orgs
$0
Other
$2,279
Leslie Mehta Esq
Interim Chief Executive Officer
$5,208
Hrs/Wk
0.5
Compensation
$5,208
Related Orgs
$0
Other
$0
Steve Wood
Vice Chairman
$0
Hrs/Wk
0.5
Compensation
$0
Related Orgs
$0
Other
$0
David Pass Pharmd
Chairman
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Mitch Bleske
Treasurer
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Gordon Rich
Founding Seat - Non Voting
$0
Hrs/Wk
0.5
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 |
|---|---|---|---|---|---|---|
| Nupur Garg | VP Of Research | 40 | $187.3K | $0 | $7,384 | $194.7K |
| Meghan Cordeiro | Marketing & Communication Director | 40 | $113.3K | $0 | $6,234 | $119.5K |
| Timothy Frank | Development Director | 40 | $116.5K | $0 | $2,264 | $118.7K |
| Drew Jones | VP Of Clinical Development | 40 | $109K | $0 | $839 | $109.8K |
Nupur Garg
VP Of Research
$194.7K
Hrs/Wk
40
Compensation
$187.3K
Related Orgs
$0
Other
$7,384
Meghan Cordeiro
Marketing & Communication Director
$119.5K
Hrs/Wk
40
Compensation
$113.3K
Related Orgs
$0
Other
$6,234
Timothy Frank
Development Director
$118.7K
Hrs/Wk
40
Compensation
$116.5K
Related Orgs
$0
Other
$2,264
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Alan Shukovsky | Trustee | 0.5 | $0 | $0 | $0 | $0 |
| Jospeh Horrigan Md | Trustee | 0.5 | $0 | $0 | $0 | $0 |
| Laura Stoppel Phd | Trustee | 0.5 | $0 | $0 | $0 | $0 |
| Lisa Monteggia Phd | Trustee | 0.5 | $0 | $0 | $0 | $0 |
| Mary Forrest Engel | Trustee | 0.5 | $0 | $0 | $0 | $0 |
| Parthy Evans | Trustee - Start 07/24 |
Alan Shukovsky
Trustee
$0
Hrs/Wk
0.5
Compensation
$0
Related Orgs
$0
Other
$0
Jospeh Horrigan Md
Trustee
$0
Hrs/Wk
0.5
Compensation
$0
Related Orgs
$0
Other
$0
Laura Stoppel Phd
Trustee
$0
Hrs/Wk
0.5
Compensation
$0
Related Orgs
$0
Other
$0
| $7.4M |
| $6M |
| 2020 | $3.9M | $3.8M | $2.5M | $6.3M | $5.6M |
| 2019 | $4.8M | $4.9M | $2.9M | $6.2M | $4.3M |
| 2018 | $3.6M | $4.2M | $3.6M | $5.5M | $2M |
| 2017 | $3.8M | $3.9M | $5M | $6.2M | $2.6M |
| 2016 | $4.7M | $4.9M | $3.6M | $5.2M | $3.3M |
| 2015 | $4.5M | $4.7M | $4.8M | $6.2M | $2.1M |
| 2014 | $4.6M | $4.9M | $4.5M | $6.2M | $2.4M |
| 2013 | $4.4M | $4.4M | $3.9M | $5.6M | $2.2M |
| 2012 | $4.3M | $4.4M | $5.6M | $5.8M | $1.6M |
| 2011 | $4.3M | $4M | $4.3M | $5.8M | $2.9M |
| 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 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
Drew Jones
VP Of Clinical Development
$109.8K
Hrs/Wk
40
Compensation
$109K
Related Orgs
$0
Other
$839
| 0.5 |
| $0 |
| $0 |
| $0 |
| $0 |
| Steve Marconi Cpa | Trustee - Start 07/24 | 0.5 | $0 | $0 | $0 | $0 |
Lisa Monteggia Phd
Trustee
$0
Hrs/Wk
0.5
Compensation
$0
Related Orgs
$0
Other
$0
Mary Forrest Engel
Trustee
$0
Hrs/Wk
0.5
Compensation
$0
Related Orgs
$0
Other
$0
Parthy Evans
Trustee - Start 07/24
$0
Hrs/Wk
0.5
Compensation
$0
Related Orgs
$0
Other
$0
Steve Marconi Cpa
Trustee - Start 07/24
$0
Hrs/Wk
0.5
Compensation
$0
Related Orgs
$0
Other
$0