Cure KCNH1 Foundation
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.
Cure KCNH1 Foundation at a glance
In short: Cure KCNH1 Foundation gave $168K across 4 grants in 2025 (avg $42K), mostly in Illinois. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $168,400
- Grants made (2025)
- 4
- Average grant
- $42,100
- Median grant
- $25,000
- Total assets
- $272,745
- +24.3% vs 2024
- Primary geography
- Illinois (89% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Cure KCNH1 Foundation funds
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2025
The largest 2025 recipient was Northwestern University ($150K across 3 grants). Together the top 2 received $168K.
Grant Size Distribution
4 grants across all recorded years
The most common grant size was under $50K: 3 grants of 4 (75%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 4 itemized grants.
States
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
In 2025 it made 4 grants totaling $168K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Northwestern University Evanston, IL | Funded the launch of a CRISPR gene-editing project a true cure for KCNH1 disorders. | $100,000 |
| Northwestern University Evanston, IL | 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. | $30,000 |
| Northwestern University Evanston, IL | Funded the ongoing development of antisense oligonucleotides RNA therapeutics for KCNH1 this treatment is showing very promising results in mouse studies. | $20,000 |
| N-Lorem Foundation Carlsbad, CA | Funded the final stages of preclinical development of an allele selective antisense oligonucleotide RNA therapeutic for KCNH1. | $18,400 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $272,745 | $316,563 | $263,319 | $168,400 | 4 | $2,814 |
| 2024 | $219,501 | $189,964 | $84,637 | — | — | — |
| 2023 | $114,174 | $52,188 | $76,854 | — | — | — |
| 2022 | $138,840 | $277,279 | $142,439 | — | — | $486 |
About Cure KCNH1 Foundation
Based on IRS filings
Cure KCNH1 Foundation is a public charity focused on Medical Research, based in Encinitas, CA. IRS filing data is available from 2022 through 2025. As of 2025, the organization holds $273K in total assets. In 2025, it awarded 4 grants totaling $168K. Net investment income was $3K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Cure KCNH1 Foundation is led by Michaelle Jinnette, President on every filing since 2022; none of the 7 officers listed in 2025 report compensation.
Officers on the 2025 filing
Michaelle Jinnette
President
On filings since 2022
50 hrs/week
No compensation reported
Amy Finnigan
Director
On filings since 2022
2 hrs/week
No compensation reported
Noreen Haider
Director
On filings since 2023
2 hrs/week
No compensation reported
Meg Stacker King
Director
On filings since 2024
2 hrs/week
No compensation reported
Josh Yelsey
Director
New on the 2025 filing
2 hrs/week
No compensation reported
James Pearson
Secretary
On filings since 2022
2 hrs/week
No compensation reported
Kevin Witt
Treasurer
Director → Treasurer, 2025
On filings since 2022
15 hrs/week
No compensation reported
Former officers (1)
- Former: Joshua Yelsey (2022–2024) — Treasurer
Data from IRS Form 990 filings, 2022–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about Cure KCNH1 Foundation
How much does Cure KCNH1 Foundation give each year?
Cure KCNH1 Foundation gave $168K across 4 grants in 2025, according to its 2025 IRS Form 990.
What is Cure KCNH1 Foundation's typical grant size?
Cure KCNH1 Foundation's median grant in 2025 was $25,000, and its average grant was $42,100, across 4 grants on its 2025 IRS Form 990.
Where does Cure KCNH1 Foundation give grants?
Cure KCNH1 Foundation gives mostly in Illinois: 89% of the grant dollars itemized on its 2025 IRS Form 990 went to recipients there. The next largest state was California (11%). The most frequent recipient cities were Evanston, IL (3 grants).
Does Cure KCNH1 Foundation give general operating support?
Not in 2025: none of the 4 grants with a stated purpose on Cure KCNH1 Foundation's 2025 IRS Form 990 were described as general or operating support.
How large is Cure KCNH1 Foundation?
Cure KCNH1 Foundation reported $273K in total assets on its 2025 IRS Form 990. Its revenue that year was $317K.
What is Cure KCNH1 Foundation?
Cure KCNH1 Foundation is a public charity focused on Medical Research, based in Encinitas, CA. It holds $273K in total assets as of 2025.
What is Cure KCNH1 Foundation's EIN?
Cure KCNH1 Foundation's EIN (Employer Identification Number) is 87-2041980. IRS Form 990 filing data is available on this page for 2022–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(1)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2025 (received by the IRS May 15, 2026)
Live grants for the work Cure KCNH1 Foundation funds
Medical Research Open opportunities, soonest deadline first.
- Dr. Richard A. Falls Virginia Lions Eye Institute Research Grant Up to $40,000 (yearly total budget) · Due October 25, 2026
- NSF Graduate Research Fellowship Program (GRFP) $32,000 annually plus $12,000 cost of education allowance · Due October 27, 2026
- Social, Political and Economic Inequality Grants Due October 28, 2026
Explore Open Grants
Browse active grant opportunities in Cure KCNH1 Foundation's focus areas in our free grants database
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