Public Charity

Cure KCNH1 Foundation

Cure KCNH1 Foundation is a nonprofit organization categorized as Public Charity based in Encinitas, CA. Its most recent IRS filing (2025) reports revenue of $317K, expenses of $263K, total assets of $273K. Imperigo tracks 5 reported grant relationships connected to this organization totaling approximately $915K.

EIN: 872041980 Encinitas, CA Alliances & Advocacy NTEE: H01 Latest filing: 2025
Total Revenue$317K
Total Expenses$263K
Total Assets$273K
Grant Records5
Funding Total$915K
Filing Years2022–2025

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.

Where $100 goes at Cure KCNH1 Foundation

How Cure KCNH1 Foundation divides every $100 it spends, from its own Form 990 filings, averaged across 4 years.

$87 Programs the work itself
$13 Management running the organization
$0 Fundraising none reported

No fundraising costs are reported. That often means fundraising runs through a separate affiliated organization that files its own return.

Inside the $87 for programs

$41
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…
47% of program spending
$13
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
14% of program spending
$8
Funded the ongoing development of antisense oligonucleotides RNA therapeutics this treatment is showing very promising results in mouse studies for KCNH1
9% of program spending

Plus 5 more programs. Cost per person served and the full program breakdown are on the full profile.

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Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

Director Amy Finnigan
Secretary James Pearson
Director Josh Yelsey
Treasurer Kevin Witt
Director Meg Stacker King
President Michaelle Jinnette

Officer compensation and complete director data available with membership.

Top Grant Purposes

Health & Medicine
$800,000 1 grant
General Support
$115,360 4 grants

Financial Trends

Year Revenue Expenses Assets
2025 $317K $263K $273K
2024 $190K $85K $220K
2023 $52K $77K $114K
2022 $277K $142K $139K

Between 2022 and 2025, reported annual revenue grew from $277K to $317K (+14%), with total assets most recently reported at $273K.

Interactive year-over-year charts and full filing details available with membership.

See the full picture for Cure KCNH1 Foundation

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