Cure Cdkl5 Epilepsy Foundation
Public records show a registered, tax-exempt organization in good standing.
What it says it does
Cure CDKL5 Epilepsy Foundation's mission is to find a cure for children suffering from CDKL5 Deficiency Disorder and improve the qualtiy of life for them and their families. We will provide financial grants and payments to advance science and research to the academic, biopharma, scientific and medical community to pursue our mission. CDKL5 is a rare developmental epileptic encephalophathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity.
- Income
- $192,305
- Spending
- $14,000
- Reserves
- Over 10 years of spending
- Largest source of income
- donations and private grants, 100%
Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
We do not score finances when yearly spending is very small or the return has too little detail. The ratios stop meaning much at that size.
Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
This organization files the short tax form, which does not ask about boards, policies or audits. That is normal for a small charity and is not a mark against it.
Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (1)
- $14,000 spent. In 2024, CURE5 raised $192k to advance research and therapeutic development for CDKL5 Deficiency Disorder. The Foundation paid $14k to Unravel Biosciences which provided specialized scientific services supporting preclinical research. Specifically, Unravel Biosciences leveraged its AI-driven RNA analysis for a rapid drug repurposing screen. The data collected will be used in partnership with other CURE5 grantees. In addition, the Foundation designed and launched its grantmaking framework, identified research collaborators, and initiated planning for larger research grants to be awarded in 2025. These activities represent the Foundation's first year of programmatic operations in pursuit of its exempt purpose of supporting scientific discovery and treatments for CDKL5 Deficiency Disorder. The principal project funded in 2025 will be an iPSC portfolio with Boston Children's and building on our repurposing work with several other partners.
Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since March 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.