International Rett Syndrome Foundation
- Assets
- $7.4m
- Revenue
- $4.1m
- Investments
- $0.0
- Employees
- 10
- Location
- Cincinnati, OH
- Founding
- 03/2000
- Data as of
- 12/2021
- 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 12/2021, Rettsyndromeorg employed 10 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 12/2021, Rettsyndromeorg generated $4.1m in total revenue. The organization has seen a slow decline revenue. Over the past 7 years, revenues have fallen by an average of (1.3%) each year. All expenses for the organization totaled $4.1m during the year ending 12/2021. As we would expect to see with falling revenues, expenses have declined by (2.1%) per year over the past 7 years. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Rettsyndromeorg has awarded 57 individual grants totaling $9,835,790. 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
2021
Describe the Organization's Mission:
Part 3 - Line 1
TO FUND RESEARCH 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 AND NEURO-HABILITATION RESEARCH 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 WORK TO EXPAND ACCESS TO HIGH QUALITY TREATMENTS AND CARE IN OUR SUPPORT OF THE NATURAL HISTORY STUDY, AND BY SPONSORING A NATIONAL LEARNING COLLABORATIVE GEARED TOWARD DEFINITION AND SPREAD OF EVIDENCE-BASED CARE OF PATIENTS WITH RETT SYNDROME.
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 |
|---|---|---|---|
Dominique Pichard Chief Science Officer | Officer | 50 | $261,120 |
Melissa Kennedy Executive Director | Officer | 50 | $180,865 |
Timothy Frank Chief Marketing & Development Officer | 50 | $113,463 | |
William Babiarz Board Chair | OfficerTrustee | 2 | $0 |
David Pass Pharmd Vice Chairman | OfficerTrustee | 1 | $0 |
Mitch Bleske Treasurer | OfficerTrustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $1,039,306 |
| Related organizations | $0 |
| Government grants | $625,646 |
| All other contributions, gifts, grants, and similar amounts not included above | $2,341,308 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $4,006,260 |
| Total Program Service Revenue | $250 |
| Investment income | $100,997 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $142,968 |
| Net Income from Fundraising Events | -$143,450 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $5,619 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $4,132,287 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $1,189,258 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $534,049 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $442,235 |
| Compensation of current officers, directors, key employees. | $52,463 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $510,714 |
| Pension plan accruals and contributions | $6,555 |
| Other employee benefits | $18,720 |
| Payroll taxes | $65,263 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $3,174 |
| Fees for services: Accounting | $29,301 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $26,562 |
| Fees for services: Other | $383,688 |
| Advertising and promotion | $0 |
| Office expenses | $56,588 |
| Information technology | $118,336 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $25,986 |
| 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 | $3,906 |
| All other expenses | $0 |
| Total functional expenses | $4,097,063 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $0 |
| Savings and temporary cash investments | $3,399,395 |
| Pledges and grants receivable | $274,935 |
| 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 | $9,946 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $3,705,611 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $26,619 |
| Total assets | $7,416,506 |
| Accounts payable and accrued expenses | $250,476 |
| Grants payable | $1,135,511 |
| 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 | $1,385,987 |
| Net assets without donor restrictions | $4,360,641 |
| Net assets with donor restrictions | $1,669,878 |
| 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 | $7,416,506 |
Grants Awarded
Over the last fiscal year, International Rett Syndrome Foundation has awarded $1,189,258 in support to 11 organizations.
| Grant Recipient | Amount |
|---|---|
Boston, MA PURPOSE: Rett Syndrome Research | $150,000 |
Los Angeles, CA PURPOSE: Rett Syndrome Research | $150,000 |
Chicago, IL PURPOSE: Rett Syndrome Research | $150,000 |
Nashville, TN PURPOSE: Rett Syndrome Research | $149,622 |
San Diego, CA PURPOSE: Rett Syndrome Research | $142,406 |
Fountain, NC PURPOSE: Rett Syndrome Research | $120,982 |
Grants Recieved
Over the last fiscal year, we have identified 34 grants that International Rett Syndrome Foundation has recieved totaling $538,117.
| Awarding Organization | Amount |
|---|---|
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $112,799 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $58,151 |
Borracho Pescador Fort Worth, TX PURPOSE: RESEARCH | $55,000 |
Albemarle Foundation Charlotte, NC PURPOSE: PROGRAM ASSISTANCE | $50,000 |
American Endowment Foundation Hudson, OH PURPOSE: DISEASE/DISORDER | $40,500 |
Rocky Mountain Rett Association Morrison, CO PURPOSE: TO ADDRESS THE NEEDS OF FAMILIES AND TO FACILITATE TREATMENT AND RESEARCH | $40,000 |
Endowment Analysis
| Beg. Balance | $1,279,391 |
| Earnings | $168,526 |
| Admin Expense | $11,558 |
| Other Expense | $70,000 |
| Ending Balance | $1,366,359 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
The Association For Frontotemporal Degeneration King Of Prussia, PA | $44,796,969 | $12,057,958 |
Childrens Oncology Group Foundation Philadelphia, PA | $22,837,173 | $7,487,855 |
International Rett Syndrome Foundation Cincinnati, OH | $7,416,506 | $4,132,287 |
Fox Chase Cancer Center Foundation Philadelphia, PA | $63,333,365 | $6,307,847 |
Fraternal Order Of Eagles Foundation Grove City, OH | $12,562,333 | $4,443,136 |
Cancer Free Kids Pediatric Cancer Research Alliance Loveland, OH | $921,722 | $1,755,418 |
American Foundation For Children With Aids Inc Harrisburg, PA | $518,393 | $1,638,509 |
The Naspghan Foundation Ambler, PA | $6,522,780 | $1,880,637 |
Kidney Cancer Coalition Inc Philadelphia, PA | $1,227,198 | $1,038,387 |
Awakening Angels Lakewood, OH | $3,123,435 | $1,421,872 |
Northern Ohio Hemophilia Foundation Inc Cleveland, OH | $1,020,593 | $544,701 |
Als Hope Foundation Philadelphia, PA | $328,240 | $510,717 |