Program areas at cont SLC13A5 Foundation
Funding Scientific Research - We continued our in-person, digital and remote natural history studies for SLC13A5 with Ciitizen Corporation, Brown University, UT Southwestern, and Stanford University. These studies are key for our clinical trial readiness. We also funded basic and translational research.
Conference - We continue to create a patient-centered network of doctors, researchers, clinicians, and families. We attend neurology, epilepsy, and drug development conferences and host research roundtables to build partnerships and share current research.
Education, Family Support and Awareness - We are the only organization dedicated to supporting families with SLC13A5 Epilepsy and raising awareness about the disease. Our ongoing program includes sharing updates about the latest research findings and connecting and empowering families so they can share their experiences and support one another. We have an annual awareness day (May 13), host monthly virtual support calls, maintain a website, and send a monthly electronic newsletter.
Grants made by cont SLC13A5 Foundation
Who funds cont SLC13A5 Foundation
Grants from foundations and other nonprofits
Personnel at cont SLC13A5 Foundation
| Name | Title | Compensation | Date of data |
|---|
| Kimberly Nye | Chair and Executi | $0 | 2024-08-20 |
| Hugh Rienhoff, JR., MD | Director | | 2023-03-26 |
| Kevin McDonnell | Treasurer | $0 | 2023-12-31 |
| Paula Gani | Secretary | $0 | 2023-12-31 |
| Michael Black | Vice Chair | $0 | 2023-12-31 |
| ...and 2 more key personnel |
Financials for cont SLC13A5 Foundation
| Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
|---|
| Total grants, contributions, etc. | $433,322 | $610,734 | -29% |
| Program services | $0 | $0 | - |
| Investment income and dividends | $0 | $0 | - |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $0 | $0 | - |
| Net income from fundraising events | $68,686 | $0 | 999% |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $1,639 | $0 | 999% |
| Total revenues | $503,647 | $610,734 | -17.5% |
Organizations like cont SLC13A5 Foundation
| Organization | Type | Location | Revenue |
|---|
| American SIDS Institute | 501(c)(3) | Naples, FL | $801,542 |
| Progeria Research Foundation (PRF) | 501(c)(3) | Peabody, MA | $2,231,500 |
| Hope for Children Research Found | 501(c)(3) | Ramsey, NJ | $190,540 |
| Radiation Oncology Institute (ROI) | 501(c)(3) | Arlington, VA | $518,598 |
| Sierra Veterans Research and Education Foundation | 501(c)(3) | Reno, NV | $359,581 |
| New York Cardiothoracic Transplant Consortium | 501(c)(3) | Troy, NY | $235,145 |
| Atlanta Neuroscience Foundation | 501(c)(3) | Atlanta, GA | $536,182 |
| Alzheimer's Research and Prevention Foundation | 501(c)(3) | Tucson, AZ | $565,965 |
| Myelin Repair Foundation (MRF) | 501(c)(3) | Saratoga, CA | $266,071 |
| Cardiovascular Institute | 501(c)(3) | Warminster, PA | $650,492 |
Data update history
September 29, 2024
Posted financials
Added Form 990 for fiscal year 2023
December 2, 2023
Posted financials
Added Form 990 for fiscal year 2022
August 17, 2023
Posted financials
Added Form 990 for fiscal year 2020
Nonprofit Types
Grantmaking organizationsDisease research fundraisersMedical research organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchFundraising eventsState / local levelTax deductible donationsAccepts online donations
General information
- Address
- 430 Claremont Way
- Menlo Park, CA 94025
- Metro area
- San Francisco-Oakland-Berkeley, CA
- County
- San Mateo County, CA
- Website URL
- tessresearch.org/Â
- Phone
- (650) 521-2279
IRS details
- EIN
- 47-3108868
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 2015
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- H90: Medical Specialty Research
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
California AB-488 details
- AB 488 status
- May Operate or Solicit for Charitable Purposes
- Charity Registration status
- Current
- FTB status revoked
- Not revoked
- AG Registration Number
- CT0216933
- FTB Entity ID
- 3753028
- AB 488 data last updated ("as-of") date
- 2025-01-15
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