Cystinosis Research Network Inc

Nonprofit profile at a glance

EIN
043323789
IRS 990 coverage
2010–2024
Forms available
Form 990 2024
Location
Lake Forest, IL, USA
Phone
8477350471
Rating
74
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Education N.E.C.

Official website

Reported finances

Revenue
$646,021
Expenses
$356,700
Assets
$604,986
Liabilities
$43,460

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

Leadership & pay

14 people listed

Executive titles in this filing

  • JOHNATHAN DICKS (PRESIDENT, V)

People named in this filing

  • JOHNATHAN DICKS (PRESIDENT, V)
  • KAREN GLEDHILL (SECRETARY)
  • CAROL HUGHES (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 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The cystinosis research network is an all volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.

What it reported doing in 2024

The organization provides information and opportunities to network for individuals with cystinosis and their families through participation in a biennial conference on cystinosis. It also supports newly diagnosed and existing families by providing access to world experts via advisory boards, moderation of an email support group and information packets.

Operating model

Revenue model
Donor-supported. 98% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 76% for direct work, and 24% 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 the filing reports few safeguards for money sent abroad.

Rating breakdown

  • Financial Efficiency: 57
  • Transparency & Controls: 81
  • Accountability: 88
  • Sustainability: 76
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 42.6%; rating input score 43
  • Program expense ratio: 74.9%; rating input score 75
  • Fundraising efficiency: $38.7 raised per $1 spent on fundraising; rating input score 73; 73rd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 3 of 8 controls in place; rating input score 38
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Pass
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Pass
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 76th percentile among comparable filings
  • Major donor itemization: Limited
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • 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: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 44.8%; rating input score 91; 91st percentile among comparable filings
  • Total-asset coverage ratio: 1.7; rating input score 60; 60th percentile among comparable filings
  • Liabilities to assets ratio: 0.07; rating input score 47; 47th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 81; 81st percentile among comparable filings

Growth

  • Program expense growth: 0.5% per year; rating input score 100; 20th percentile among comparable filings
  • Revenue growth: 2.1% per year; rating input score 100; 25th percentile among comparable filings
  • Asset growth: 4.1% per year; rating input score 100; 34th percentile among comparable filings

Details

  • Where the money goes: 42.6% of revenue deployed · 74.9% of spending went to programs
  • Governance: 13 of 13 board members independent · 5 of 7 filing controls reported
  • Programs: 3 filed program accomplishments · $267K in reported program spending
  • Leadership: top reported pay $0 · 14 people listed
  • Consistency: 25 of 25 current checks pass
  • Schedules: 5 filed schedules · includes foreign activity and grants
  • Filing history: 14 filing years from 2010 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.

  • Moderate — Financial Efficiency: Mission deployment rate scored 43/100.
  • Moderate — Transparency & Controls: Foreign activity oversight: 5 of 8 not reported.
  • Review — Accountability: Governance controls: 2 of 7 not reported.
  • Moderate — Sustainability: Liabilities to assets ratio scored 47/100.