Cure Kcnh1 Foundation
Public records show a registered, tax-exempt organization in good standing.
What it says it does
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.
- Income
- $316,563
- Spending
- $263,319
- Spent on programs
- 81%
- Reserves
- 12.4 months of spending
- Largest source of income
- donations and private grants, 98%
- Employees
- 0
- Volunteers
- 15
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 100 out of 100. Higher than 81% of charities in its peer group (medical research, $250k to $1m).
Reserves
35 of 35Spendable reserves would cover 12.4 months of spending.
Debt
20 of 20It owes 0% of what it owns.
Living within its means
15 of 15Income exceeded spending by 17% of income.
Income trend
15 of 15Income rose 70% on the year before.
Spending floor
15 of 1581% of spending went to programs and raising each dollar of donations cost 0 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Fair: 59 out of 100. Higher than 27% of charities in its peer group (medical research, $250k to $1m).
Independent board
25 of 257 of 7 voting board members are independent.
Conflict of interest policy
0 of 15Reports no written conflict of interest policy.
Whistleblower policy
0 of 8Reports no written whistleblower policy.
Record keeping policy
0 of 7Reports no written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Independent check of accounts
6 of 15Its accounts were not audited or reviewed by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2025, 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 (8)
- $100,000 spent. 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.
- $30,591 spent. Established 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.
- $20,000 spent. Funded the ongoing development of antisense oligonucleotides RNA therapeutics this treatment is showing very promising results in mouse studies for KCNH1.
- $18,480 spent. Funded the final stages of preclinical development of an allele selective antisense oligonucleotide RNA therapeutic for KCNH1.
- $12,371 spent. Launched 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.
- $18,352 spent. Scientific engagement and education for KCNH1 patient families and scientific advocacy for KCNH1 related disorders across the rare disease community.
- $993 spent. KCNH1 awareness campaign within the rare disease and broader general community.
- $11,814 spent. Organized 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.
Source: Form 990 for the year ending December 31, 2025, 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 September 7, 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 September 30, 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 September 10, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since December 2021.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 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 October 7, 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.