California · Nonprofit
Cure KCNH1 Foundation
Cure KCNH1 Foundation (California) receives grants from 7 organizations whose IRS filings report $989,277 to it, the largest being Silicon Valley Community Foundation ($800,000). 2 of them have funded it in more than one year, and 87% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $317k
- Funders on record
- 7
- Grants received
- $989k
- Net assets
- $273k
What Cure KCNH1 Foundation does
Mission
Our mission is to urgently improve the lives of individuals and families affected by KCNH1-Related Disorders by accelerating research toward the development of effective treatments and a cure building connections within the KCNH1 patient and professional community raising awareness about KCNH1-related disorders and advocating for the needs of families affected by rare diseases.
As stated on its FY2025 Form 990.
Programs
Funded the launch of a CRISPR gene-editing project a true cure for KCNH1 disorders our research team has identified very promising base-editors that show high efficiency and low off-target effects.
$100,000 spentof which $100,000 as grants47% of program spendingEstablished a biorepository to collect patient-derived bio samples to fund the development of cell lines that will be used to develop disease-models and screen therapeutics for KCNH1.
$30,591 spentof which $30,000 as grants14% of program spendingFunded the ongoing development of antisense oligonucleotides RNA therapeutics this treatment is showing very promising results in mouse studies for KCNH1.
$20,000 spentof which $20,000 as grants9% of program spendingFunded the final stages of preclinical development of an allele selective antisense oligonucleotide RNA therapeutic for KCNH1.
$18,480 spentof which $18,480 as grants9% of program spendingLaunched a natural history patient registry database for the rare genetic disorder KCNH1. This is an essential initiative for advancing the research and laying the foundation for future clinical trials.
$12,371 spent6% of program spendingScientific engagement and education for KCNH1 patient families and scientific advocacy for KCNH1 related disorders across the rare disease community.
$18,352 spent9% of program spendingKCNH1 awareness campaign within the rare disease and broader general community.
$993 spent0% of program spendingOrganized and participated in scientific clinical and community gatherings that advance research education and support for individuals affected by KCNH1-related conditions. KCNH1 patient community conventions focused on education peer support and care coordination. Research-focused meetings with clinicians geneticists and scientists studying KCNH1 and related neurological conditions. Broader rare disease conferences that facilitate collaboration data sharing and advocacy alignment across similar conditions.
$11,814 spent6% of program spending
The 8 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $212,601.
The organization over time
Each line starts at 100 in 2022, so what you read is the shape rather than the size: 150 means half as much again as 2022, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2023 to 2024, from $114k to $220k (+92%).
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.
98% of Cure KCNH1 Foundation’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 1 of the last 4 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Who funds it, year by year
2022 → 2023: the base held at 3 funders, grant income fell $127k → $7k.
5 of 7 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 87% 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 KCNH1 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 KCNH1 Foundation leans on a few funders — its largest provides 81% of grant income and the top three 99%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
87% 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 KCNH1 Foundation.
Largest funder’s share by year: 2022 59% · 2023 90% — growing more concentrated.
“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
87% of Cure KCNH1 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. Of the $125k that is directly attributable, 100% of it comes from California funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $864k arriving through sponsors registered in 5 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 KCNH1 Foundation runs a healthier operating margin than half of the 7,883 health nonprofits its size.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like Cure KCNH1 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 California
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
81% of spending goes to programs.
Governance
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for Cure KCNH1 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 KCNH1 Foundation?
- Cure KCNH1 Foundation (California) receives grants from 7 organizations whose IRS filings report $989,277 to it, the largest being Silicon Valley Community Foundation ($800,000). 2 of them have funded it in more than one year, and 87% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does Cure KCNH1 Foundation have?
- IRS filings report 7 organizations giving $989,277 in grants to Cure KCNH1 Foundation, 2 of which have funded it in more than one year.
- Who is the largest funder of Cure KCNH1 Foundation?
- Silicon Valley Community Foundation is the largest funder on record, with $800,000 in grants. The full list of funders is on this page.
- How can an organization like Cure KCNH1 Foundation find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in California. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2022–2025), and the filings of 7 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