Program areas at Rettsyndromeorg
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.
Grants made by Rettsyndromeorg
Who funds Rettsyndromeorg
Grants from foundations and other nonprofits
Personnel at Rettsyndromeorg
Name | Title | Compensation | Date of data |
---|
Timothy Frank | Chief Marketing and Development | $118,218 | 2022-12-31 |
Dominique Pichard | Chief Science Officer | $263,680 | 2022-12-31 |
Melissa Kennedy | Executive Director | $165,981 | 2023-07-14 |
Paige Leads | Director of Family Empowerment | | 2021-02-25 |
Brittney Gibson | Family and Community Engagement Manager | | 2021-02-25 |
...and 9 more key personnel |
Financials for Rettsyndromeorg
Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
---|
Total grants, contributions, etc. | $3,581,751 | $4,006,260 | -10.6% |
Program services | $310,152 | $250 | - |
Investment income and dividends | $74,911 | $100,997 | -25.8% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $-183,793 | $142,968 | -228.6% |
Net income from fundraising events | $-126,309 | $-143,450 | 11.9% |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $4,174 | $5,619 | -25.7% |
Miscellaneous revenues | $8,422 | $19,643 | -57.1% |
Total revenues | $3,669,308 | $4,132,287 | -11.2% |
Organizations like Rettsyndromeorg
Organization | Type | Location | Revenue |
---|
Christopher and Dana Reeve Foundation | 501(c)(3) | Short Hills, NJ | $16,163,010 |
The Morgan Adams Foundation | 501(c)(3) | Denver, CO | $1,963,660 |
Dystonia Medical Research Foundation | 501(c)(3) | Chicago, IL | $2,569,110 |
Fanconi Anemia Research Fund | 501(c)(3) | Eugene, OR | $3,171,988 |
Sarcoma Foundation of America | 501(c)(3) | Damascus, MD | $3,674,023 |
CureSearch for Children's Cancer | 501(c)(3) | Bethesda, MD | $4,389,970 |
The Childrens Cancer Foundation | 501(c)(3) | Columbia, MD | $1,447,943 |
Children's Tumor Foundation | 501(c)(3) | New York, NY | $16,990,325 |
Damon Runyon Cancer Research Foundation | 501(c)(3) | New York, NY | $14,385,319 |
Leukemia Research Foundation (LRF) | 501(c)(3) | Northfield, IL | $4,193,244 |
Data update history
February 4, 2024
Received grants
Identified 10 new grant, including a grant for $50,000 from Albemarle Foundation October 26, 2023
Received grants
Identified 4 new grant, including a grant for $70,000 from Borracho Pescador August 26, 2023
Posted financials
Added Form 990 for fiscal year 2022
August 24, 2023
Updated personnel
Identified 1 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersMedical research organizationsCharities
Issues
HealthEducation
Characteristics
Provides grantsConducts researchFundraising eventsOperates internationallyNational levelEndowed supportCommunity engagement / volunteeringTax deductible donations
General information
- Address
- 4500 Cooper Rd Suite 204
- Cincinnati, OH 45242
- Metro area
- Cincinnati, OH-KY-IN
- Website URL
- rettsyndrome.org/Â
- Phone
- (513) 874-3020
IRS details
- EIN
- 31-1682518
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1999
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- H12: Medical Research Fund Raising and Fund Distribution
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
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