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THE ORGANIZATION'S MISSION IS FOCUSED ON THE DEVELOPMENT OF TREATMENTS AND CURES FOR RETT SYNDROME AND RELATED MECP2 DISORDERS.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$9.3M
Program Spending
92%
of total expenses go to program services
Total Contributions
$8.7M
Total Expenses
▼$11.7M
Total Assets
$20.4M
Total Liabilities
▼$15.6M
Net Assets
$4.7M
Officer Compensation
→N/A
Other Salaries
$1.1M
Investment Income
$449.6K
Fundraising
▼N/A
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
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 | $9.3M | $8.7M | $11.7M | $20.4M | $4.7M |
| 2023 | $8.5M | $8.1M | $12.3M | $18.5M | $7.1M |
| 2022 | $7.1M | $7M | $4M | $14.9M | $11M |
| 2021 | $8.1M | $8M | $4.7M |
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 | |
| 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)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Monica Coenraads | Chief Executive Officer | 50 | $220K | $0 | $0 | $220K |
| Heidi Epstein | Vice Chairman | 2 | $0 | $0 | $0 | $0 |
| Lawrence Mattis | Secretary | 2 | $0 | $0 | $0 | $0 |
| Marci Valner | Treasurer | 2 | $0 | $0 | $0 | $0 |
Monica Coenraads
Chief Executive Officer
$220K
Hrs/Wk
50
Compensation
$220K
Related Orgs
$0
Other
$0
Heidi Epstein
Vice Chairman
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Lawrence Mattis
Secretary
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Marci Valner
Treasurer
$0
Hrs/Wk
2
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 |
|---|---|---|---|---|---|---|
| Timothy J Freeman | Chief Development Officer | 50 | $220K | $0 | $0 | $220K |
| Jana Se Von Hehn | Chief Scientific Officer | 50 | $220K | $0 | $0 | $220K |
| Robert Deans | Chief Technology Officer | 50 | $215K | $0 | $0 | $215K |
Timothy J Freeman
Chief Development Officer
$220K
Hrs/Wk
50
Compensation
$220K
Related Orgs
$0
Other
$0
Jana Se Von Hehn
Chief Scientific Officer
$220K
Hrs/Wk
50
Compensation
$220K
Related Orgs
$0
Other
$0
Robert Deans
Chief Technology Officer
$215K
Hrs/Wk
50
Compensation
$215K
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 |
|---|---|---|---|---|---|---|
| Adrian Bird | Trustee | 2 | $0 | $0 | $0 | $0 |
| Alba Tull | Trustee | 2 | $0 | $0 | $0 | $0 |
| Amy Gilliand | Trustee | 2 | $0 | $0 | $0 | $0 |
| Brad Zelinger | Trustee | 2 | $0 | $0 | $0 | $0 |
| Brian Whitmer | Trustee | 2 | $0 | $0 | $0 | $0 |
| Ingrid Harding | Co-founder And Trustee | 2 |
Adrian Bird
Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Alba Tull
Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Amy Gilliand
Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Brad Zelinger
| $13.6M |
| $7.9M |
| 2020 | $14M | $7.8M | $3.1M | $12M | $4.5M |
| 2019 | $8.5M | $8.3M | $10.7M | $9.8M | -$6.4M |
| 2018 | $9.7M | $9.6M | $11.4M | $11.3M | -$4.4M |
| 2017 | $12.5M | $12.5M | $7.4M | $11.8M | -$2.7M |
| 2016 | $7.9M | $7.8M | $8.5M | $6.3M | -$7.7M |
| 2015 | $6M | $6M | $9.9M | $5.1M | -$7.1M |
| 2014 | $5.8M | $5.8M | $6.6M | $6.3M | -$3.2M |
| 2013 | $5.7M | $5.6M | $7.7M | $5.8M | -$2.4M |
| 2012 | $3.8M | $3.8M | $4.6M | $4.6M | -$372.6K |
| 2011 | $4M | $4M | $3.8M | $3.9M | $379.6K |
| 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 | — |
| $0 |
| $0 |
| $0 |
| $0 |
| Rachael Stevenson | Trustee | 2 | $0 | $0 | $0 | $0 |
| Rachel Rothschild | Trustee | 2 | $0 | $0 | $0 | $0 |
| Stephanie Bohn | Trustee | 2 | $0 | $0 | $0 | $0 |
Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Brian Whitmer
Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Ingrid Harding
Co-founder And Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Rachael Stevenson
Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Rachel Rothschild
Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Stephanie Bohn
Trustee
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0