KCNQ2 Cure Alliance

Nonprofit profile at a glance

EIN
471810644
IRS 990 coverage
2016–2024
Forms available
Form 990 2024, Form 990-EZ 2019, Form 990-N 2014
Location
Denver, CO, USA
Phone
3038879532
Rating
66
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Cancer

Official website

Reported finances

Revenue
$458,475
Expenses
$86,234
Assets
$1,234,962
Liabilities
$11,319

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

5 people listed

Executive titles in this filing

  • Jim Johnson (President)
  • Sara James (Vice President)

People named in this filing

  • Jim Johnson (President)
  • Sara James (Vice President)
  • Caroline Loewy (Treasurer)

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 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

KCNQ2 Cure Alliance is a non-profit organization dedicated to raising research funds for KCNQ2 epileptic encephalopathy, a rare and catastrophic form of epilepsy. By offering research grants for KCNQ2 research with a novel approach, we can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.

What it reported doing in 2024

Funding of patient-derived DNA and clinical data to identify modifiers of the KCNQ2 phenotype. Identifying these genetic and environmental modifiers will improve our capability to make an accurate prognosis for individual patients, can help to define current best treatment strategies and will help to identify novel disease pathways that can be targeted to improve outcome in the general KCNQ2-RD population.

Operating model

Revenue model
Donor-supported. 85% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 73% for direct work, and 27% for grants.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 42
  • Transparency & Controls: 94
  • Accountability: 70
  • Sustainability: 87
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 22.3%; rating input score 22
  • Program expense ratio: 64.2%; rating input score 64
  • Fundraising efficiency: $57.26 raised per $1 spent on fundraising; rating input score 79; 79th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 80th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 80%; rating input score 80; 21st percentile among comparable filings
  • Governance controls: 4 of 7 controls in place; rating input score 57
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Pass
    • 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: 81.2%; rating input score 98; 98th percentile among comparable filings
  • Total-asset coverage ratio: 14.32; rating input score 93; 93rd percentile among comparable filings
  • Liabilities to assets ratio: 0.01; rating input score 46; 46th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 69; 69th percentile among comparable filings

Growth

  • Program expense growth: -0.4% per year; rating input score 0; 29th percentile among comparable filings
  • Revenue growth: 10.1% per year; rating input score 100; 72nd percentile among comparable filings
  • Asset growth: 20.9% per year; rating input score 100; 85th percentile among comparable filings

Details

  • Where the money goes: 22.3% of revenue deployed · 64.2% of spending went to programs
  • Governance: 4 of 5 board members independent · 4 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $55K in reported program spending
  • Leadership: top reported pay $0 · 5 people listed
  • Consistency: 26 of 26 current checks pass
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 5 filing years from 2016 to 2024
  • Contacts: How to reach this organization
  • Money network: 1 filed money-flow record
  • 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 — Financial Efficiency: Mission deployment rate scored 22/100.
  • Review — Accountability: Governance controls: 2 of 6 not reported.
  • High — Growth: Program expense growth scored 0/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 46/100.