New York · Nonprofit
CURE CDKL5 EPILEPSY FOUNDATION
CURE CDKL5 EPILEPSY FOUNDATION (New York) receives grants from 2 organizations whose IRS filings report $29,387 to it, the largest being CHARITIES AID FOUNDATION AMERICA ($15,000). 1 of them have funded it in more than one year, and 100% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $192k
- Funders on record
- 2
- Grants received
- $29k
- Net assets
- $178k
What Cure Cdkl5 Epilepsy Foundation does
Mission
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.
As stated on its FY2024 Form 990-EZ.
Program
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.
$14,000 spent100% of program spending
The program described on its FY2024 Form 990-EZ. Program spending in total: $14,000.
The organization over time
Each line starts at 100 in 2023, so what you read is the shape rather than the size: 150 means half as much again as 2023, 50 means half. The number beside each label in the key is where it ended.
Balance sheet
Total assets and total liabilities at each year end, in dollars.
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
100% of CURE CDKL5 EPILEPSY FOUNDATION’s revenue is contributions — more reliant on donations than three-quarters of its peers (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 0 of the last 2 reported years ran a deficit.
Who funds it, year by year
Grant support over time, funder by funder — shade shows the grant size each year.
2 of 2 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 100% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of CURE CDKL5 EPILEPSY FOUNDATION’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
CURE CDKL5 EPILEPSY FOUNDATION leans on a few funders — its largest provides 51% of grant income and the top three 100%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
100% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund CURE CDKL5 EPILEPSY FOUNDATION.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Where its funders are
100% of CURE CDKL5 EPILEPSY FOUNDATION's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Too little is directly attributable to place on a map.
Funder states come from each funder’s own filing. $29k arriving through sponsors registered in 2 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
CURE CDKL5 EPILEPSY FOUNDATION receives grants from 2 organizations whose IRS filings report $29k to it.
this organization peer median middle 50% of peers· 13,754 health nonprofits $100k–$1M, FY2024
Organizations like CURE CDKL5 EPILEPSY FOUNDATION
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In New York
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for CURE CDKL5 EPILEPSY FOUNDATION: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds CURE CDKL5 EPILEPSY FOUNDATION?
- CURE CDKL5 EPILEPSY FOUNDATION (New York) receives grants from 2 organizations whose IRS filings report $29,387 to it, the largest being CHARITIES AID FOUNDATION AMERICA ($15,000). 1 of them have funded it in more than one year, and 100% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does CURE CDKL5 EPILEPSY FOUNDATION have?
- IRS filings report 2 organizations giving $29,387 in grants to CURE CDKL5 EPILEPSY FOUNDATION, 1 of which have funded it in more than one year.
- Who is the largest funder of CURE CDKL5 EPILEPSY FOUNDATION?
- CHARITIES AID FOUNDATION AMERICA is the largest funder on record, with $15,000 in grants. The full list of funders is on this page.
- How can an organization like CURE CDKL5 EPILEPSY FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in New York. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Cure Cdkl5 Epilepsy →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2023–2024), and the filings of 2 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing