Rett Syndrome Research Trust Inc
- Assets
- $18.5m
- Revenue
- $8.5m
- Investments
- $0.0
- Employees
- 8
- Location
- Trumbull, CT
- Founding
- 02/2008
- Data as of
- 12/2023
- EIN
- 26-0687439
Organization Overview
Rett Syndrome Research Trust Inc is located in Trumbull, CT. The organization was established in 2008. According to its NTEE Classification (E12) the organization is classified as: Fund Raising & Fund Distribution, under the broad grouping of Health Care and related organizations. As of 12/2023, Rett Syndrome Research Trust Inc employed 8 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Rett Syndrome Research Trust Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2023, Rett Syndrome Research Trust Inc generated $8.5m in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 4.0% each year. All expenses for the organization totaled $12.3m during the year ending 12/2023. While expenses have increased by 2.5% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Rett Syndrome Research Trust Inc has awarded 208 individual grants totaling $56,162,933. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
THE ORGANIZATION'S MISSION IS FOCUSED ON THE DEVELOPMENT OF TREATMENTS AND CURES FOR RETT SYNDROME AND RELATED MECP2 DISORDERS.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE ORGANIZATION PROVIDES FUNDING TO LEADING RESEARCH INSTITUTIONS AND COMPANIES WORKING ON RETT SYNDROME AND RELATED MECP2 DISORDERS.
THE ORGANIZATION SPONSORS SCIENTIFIC WORKSHOPS THAT BRING THE LEADING RETT RESEARCHERS TOGETHER WITH ELITE SCIENTISTS IN SYNERGISTIC FIELDS TO EXCHANGE DATA AND SET RESEARCH DIRECTION.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Adrian Bird Trustee | Trustee | 2 | $0 |
Alba Tull Trustee | Trustee | 2 | $0 |
Brad Zelinger Trustee | Trustee | 2 | $0 |
Brian Whitmer Trustee | Trustee | 2 | $0 |
Heidi Epstein Vice Chairman | OfficerTrustee | 2 | $0 |
Ingrid Harding Co-Founder And Trustee | Trustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $178,021 |
| All other contributions, gifts, grants, and similar amounts not included above | $7,902,663 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $8,080,684 |
| Total Program Service Revenue | $106,950 |
| Investment income | $333,088 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $3,093 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $8,523,815 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $9,938,988 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $1,147,836 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $59,126 |
| Payroll taxes | $80,841 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $0 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $174,064 |
| Advertising and promotion | $0 |
| Office expenses | $7,449 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $6,804 |
| All other expenses | $29,944 |
| Total functional expenses | $12,338,304 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $3,121,261 |
| Savings and temporary cash investments | $14,145,135 |
| Pledges and grants receivable | $1,189,610 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $1,078 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $18,457,084 |
| Accounts payable and accrued expenses | $35,125 |
| Grants payable | $11,286,147 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $11,321,272 |
| Net assets without donor restrictions | $7,135,812 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $18,457,084 |
Grants Awarded
Over the last fiscal year, Rett Syndrome Research Trust Inc has awarded $9,871,592 in support to 16 organizations.
| Grant Recipient | Amount |
|---|---|
CHILDREN'S HOSPITAL OF MONTEFIORE PURPOSE: RETT RESEARCH | $50,000 |
UNIVERSITY OF CALIFORNIA DAVIS PURPOSE: RNA EDITING | $390,506 |
MASSACHUSETTS INSTITUTE OF TECHNOLOGY PURPOSE: RNA EDITING | $3,734,738 |
BOSTON CHILDREN'S HOSPITAL PURPOSE: RETT RESEARCH | $69,088 |
EMORY UNIVERSITY PURPOSE: RNA EDITING | $1,254,085 |
RETT SYNDROME GLOBAL REGISTRY CO RSRT PURPOSE: RETT RESEARCH | $100,000 |