International Rett Syndrome Foundation
- Assets
- $6.3m
- Revenue
- $4.9m
- Investments
- $0.0
- Employees
- 14
- Location
- Cincinnati, OH
- Founding
- 03/2000
- Data as of
- 12/2023
- EIN
- 31-1682518
Organization Overview
International Rett Syndrome Foundation, operating under the name Rettsyndromeorg, is located in Cincinnati, OH. The organization was established in 2000. According to its NTEE Classification (H12) the organization is classified as: Fund Raising & Fund Distribution, under the broad grouping of Medical Research and related organizations. As of 12/2023, Rettsyndromeorg employed 14 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Rettsyndromeorg 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, Rettsyndromeorg generated $4.9m in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 0.8% each year. All expenses for the organization totaled $3.7m during the year ending 12/2023. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Rettsyndromeorg has awarded 90 individual grants totaling $14,456,981. 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
TO FUND RESEACH AIMED AT POTENTIAL CURES FOR RETT SYNDROME AND TO EMPOWER FAMILIES THROUGH EDUCATION.
Describe the Organization's Program Activity:
Part 3 - Line 4a
OUR COMMITMENT TO FINDING TREATMENTS AND A CURE FOR RETT SYNDROME COMPELS US TO ADVANCE CUTTING EDGE RESEARCH. THROUGH OUR RESEARCH PROGRAMS WE FUND BASIC, TRANSLATIONAL GRANTS THROUGHOUT THE WORLD. WE FUND POST-DOCTORAL RESEARCHERS, HOST SCIENCE SYMPOSIA TO ALLOW FOR DISCUSSIONS AND NETWORKING OF THE WORLD'S RETT EXPERTS. WE FUND COMPOUND DEVELOPMENT DIRECTLY THROUGH FINANCIAL SUPPORT OF HIGH THROUGHPUT SCREENING SYSTEMS AS WELL AS FINANCIALLY SUPPORTING CLINICAL TRIALS. WE ACTIVELY SUPPORT A CLINICAL RESEARCH NETWORK THAT DEVELOPS CARE GUIDELINES AND CONTRIBUTES TO A DATA REGISTRY THAT BUILDS UPON THE NHS FUNDED NATURAL HISTORY STUDY, AND AIMS TO CONTINUE TO DEEPEN OUR UNDERSTANDING OF RETT SYNDROME AND SUPPORT DRUG DEVELOPMENT.
WE EMPOWER FAMILIES THROUGH OUR ROBUST EDUCATIONAL PROGRAMMING, CONSISTING OF FREE MONTHLY WEBINARS COVERING HEALTH CARE TOPICS OF INTEREST TO FAMILIES, AS WELL AS 4 IN-PERSON REGIONAL EDUCATION DAYS. WE PROVIDE 24/7/365 ACCESS TO 2 STAFF MEMBERS WHO ARE DEVOTED TO FAMILY ENGAGEMENT. WE PROVIDE EDUCATIONAL MATERIALS FOR FAMILIES, CAREGIVERS, SCHOOLS AND THERAPISTS. WE ADVOCATE TO FEDERAL OFFICIALS, KEEPING RETT SYNDROME ON THE LIST OF FUNDING PRIORITIES. WE WORK WITH INDUSTRY IN THE DESIGN OF CLINICAL TRIALS, ENSURING THE CLINICAL TRIAL ENVIRONMENT IS FAMILY CENTERED. WE SUPPORT A NETWORK OF CLINICS IN NORTH AMERICA THAT IS BUILDING GUIDELINES FOR CLINICAL CARE, MAKING THOSE GUIDELINES AVAILABLE TO FAMILIES AS THEY WORK WITH THEIR CHILD'S CARE TEAM, ENSURING THEY ARE RECEIVING APPROPRIATE CARE.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Steve Tomes Trustee | Trustee | 0.5 | $0 |
Beth Farnum Trustee | Trustee | 0.5 | $0 |
William Babiarz Trustee | Trustee | 0.5 | $0 |
Jospeh Horrigan MD Trustee | Trustee | 0.5 | $0 |
Lisa Monteggia PHD Trustee | Trustee | 0.5 | $0 |
David Pass Pharmd Chairman | OfficerTrustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $381,561 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $3,204,741 |
| Noncash contributions included in lines 1a–1f | $334,941 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $3,586,302 |
| Total Program Service Revenue | $161,492 |
| Investment income | $125,135 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$36,338 |
| Net Income from Fundraising Events | $1,019,813 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | -$939 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $4,855,820 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $687,123 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $169,794 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $704,286 |
| Compensation of current officers, directors, key employees. | $60,559 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $398,590 |
| Pension plan accruals and contributions | $8,312 |
| Other employee benefits | $24,641 |
| Payroll taxes | $88,129 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $4,653 |
| Fees for services: Accounting | $36,234 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $27,119 |
| Fees for services: Other | $117,742 |
| Advertising and promotion | $0 |
| Office expenses | $29,680 |
| Information technology | $222,473 |
| Royalties | $0 |
| Occupancy | $29,472 |
| Travel | $345,824 |
| 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 | $4,053 |
| All other expenses | $0 |
| Total functional expenses | $3,723,772 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $0 |
| Savings and temporary cash investments | $2,205,423 |
| Pledges and grants receivable | $169,301 |
| 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 | $55,175 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $3,762,763 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $70,743 |
| Total assets | $6,263,405 |
| Accounts payable and accrued expenses | $204,945 |
| Grants payable | $124,681 |
| 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 | $49,589 |
| Total liabilities | $379,215 |
| Net assets without donor restrictions | $4,582,266 |
| Net assets with donor restrictions | $1,301,924 |
| 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 | $6,263,405 |
Grants Awarded
Over the last fiscal year, International Rett Syndrome Foundation has awarded $687,123 in support to 7 organizations.
| Grant Recipient | Amount |
|---|---|
BOSTON CHILDREN'S HOSPITAL PURPOSE: Rett Syndrome Research | $75,000 |
LOYOLA UNIVERISTY CHICAGO PURPOSE: Rett Syndrome Research | $150,000 |
VANDERBILT PURPOSE: Rett Syndrome Research | $149,623 |
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA US SAN DIEGO PURPOSE: Rett Syndrome Research | $150,000 |
UNIVERSITY OF CALIFORNIA UC SAN DIEGO PURPOSE: Rett Syndrome Research | $75,000 |
LUCY THERAPEUTICS INC PURPOSE: Rett Syndrome Research | $50,000 |