International Foundation For CDKL5 Research

Nonprofit profile at a glance

EIN
270950477
IRS 990 coverage
2011–2024
Forms available
Form 990 2024, Form 990-EZ 2010, Form 990-N 2009
Location
Wadsworth, OH, USA
Phone
9792653411
Rating
84
Verdict
STRONG
Rating confidence
Standard
Sector
Public Foundations

Official website

Reported finances

Revenue
$716,340
Expenses
$357,011
Assets
$976,798
Liabilities
$12,536

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

Leadership & pay

8 people listed

Executive titles in this filing

  • Karen Utley (President)
  • Rick Upp (Vice President)

People named in this filing

  • Karen Utley (President)
  • Rick Upp (Vice President)
  • Paul Miller (Secretary)

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

To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5.

What it reported doing in 2024

In 2024, cash and noncash contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $120,515 were made during 2024 to fund research that will lead to a cure for this very debilitating disease in the near future. The Organizations goals include aggressive research, studies to improve the quality of life for children with CDKL5, and testing of compounds to identify neurologic modifiers.

Operating model

Revenue model
Donor-supported. 99% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 62% for direct work, and 38% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - The filed numbers largely add up and a large share of total spending goes to programs. A relatively small share of available resources goes toward mission work and some filed totals do not add up.

Rating breakdown

  • Financial Efficiency: 64
  • Transparency & Controls: 96
  • Accountability: 100
  • Sustainability: 82
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 44.1%; rating input score 44
  • Program expense ratio: 87.8%; rating input score 88
  • Fundraising efficiency: $213.31 raised per $1 spent on fundraising; rating input score 92; 92nd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.8%; rating input score 94; 24th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 76th 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; 63rd percentile among comparable filings
  • Governance controls: 7 of 7 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • 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: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 50.2%; rating input score 92; 92nd percentile among comparable filings
  • Total-asset coverage ratio: 2.74; rating input score 73; 73rd percentile among comparable filings
  • Liabilities to assets ratio: 0.01; rating input score 67; 67th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 81; 81st percentile among comparable filings

Growth

  • Program expense growth: 4.3% per year; rating input score 100; 39th percentile among comparable filings
  • Revenue growth: 6.8% per year; rating input score 100; 53rd percentile among comparable filings
  • Asset growth: 2.5% per year; rating input score 100; 27th percentile among comparable filings

Details

  • Where the money goes: 44.1% of revenue deployed · 87.8% of spending went to programs
  • Governance: 8 of 8 board members independent · 7 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $313K in reported program spending
  • Leadership: top reported pay $0 · 8 people listed
  • Consistency: 26 of 27 current checks pass · 1 finding to review
  • Schedules: 7 filed schedules · includes major donors and grants
  • Filing history: 13 filing years from 2011 to 2024
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: 4 filed related-organization links
  • 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.

  • Moderate — Financial Efficiency: Mission deployment rate scored 44/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.