Cure KCNH1 Foundation

Nonprofit profile at a glance

EIN
872041980
IRS 990 coverage
2022–2025
Forms available
Form 990 2025, Form 990-EZ 2024, Form 990-N 2021
Location
Encinitas, CA, USA
Phone
6197420013
Rating
79
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Alliance/Advocacy Organizations

Reported finances

Revenue
$316,563
Expenses
$263,319
Assets
$272,745
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

7 people listed

Executive titles in this filing

  • Michaelle Jinnette (President)

People named in this filing

  • Michaelle Jinnette (President)
  • Kevin Witt (Treasurer)
  • Noreen Haider (Director)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 98% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 79% of its reported program spending out as grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and total assets are small relative to annual expenses; liquid coverage is unknown.

Rating breakdown

  • Financial Efficiency: 75
  • Transparency & Controls: 89
  • Accountability: 70
  • Sustainability: 61
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 67.5%; rating input score 67
  • Program expense ratio: 80.7%; rating input score 81
  • Fundraising efficiency: $515.21 raised per $1 spent on fundraising; rating input score 95; 95th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 92.3%; rating input score 92; 24th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 62nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 2 of 7 controls in place; rating input score 29
    • Conflict-of-interest policy: Fail
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 16.8%; rating input score 67; 67th percentile among comparable filings
  • Total-asset coverage ratio: 1.04; rating input score 42; 42nd percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 77; 77th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 67; 67th percentile among comparable filings

Growth

  • Program expense growth: 13.6% per year; rating input score 100; 75th percentile among comparable filings
  • Revenue growth: 12.2% per year; rating input score 100; 75th percentile among comparable filings
  • Asset growth: 27.2% per year; rating input score 100; 89th percentile among comparable filings

Details

  • Where the money goes: 67.5% of revenue deployed · 80.7% of spending went to programs
  • Governance: 7 of 7 board members independent · 2 of 7 filing controls reported
  • Programs: 8 filed program accomplishments · $213K in reported program spending
  • Leadership: top reported pay $0 · 7 people listed
  • Consistency: 43 of 44 current checks pass · 1 finding to review
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 2 filing years from 2022 to 2025
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Accountability: Governance controls: 4 of 6 not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 42/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.