Joubert Syndrome and Related Disorders Foundation

Nonprofit profile at a glance

EIN
521871536
IRS 990-EZ coverage
2022–2024
Forms available
Form 990 2021, Form 990-EZ 2024
Location
Lithia, FL, USA
Phone
8473616542
Rating
52
Verdict
MIXED
Rating confidence
Moderate
Sector
Philanthropy, Charity, Voluntarism Promotion

Reported finances

Revenue
$69,166
Expenses
$21,709
Assets
$308,516
Liabilities
$826

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

Leadership & pay

12 people listed

Executive titles in this filing

  • STEPHEN MACK (PRESIDENT)
  • MELISSA FIELDS (PRESIDENT ELECT)

People named in this filing

  • STEPHEN MACK (PRESIDENT)
  • MELISSA FIELDS (PRESIDENT ELECT)
  • JESSIKA GARIS (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-EZ. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Providing an international network of parents who share knowledge, experience, and emotional support. The foundation offers a networking list, newsletter, and a biennial conference. The joubert syndrome & related disorders foundation plays an important role in educating physicians and their support teams as well as increasing public awareness.

What it reported doing in 2024

To administer a biennial conference featuring physicians who are conducting joubert syndrome research and to provide helpful information to parents raising children with joubert syndrome.

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 47% for direct work, and 53% for grants.

The verdict

MIXED - The filed numbers largely add up and program spending has grown recently. A relatively small share of available resources goes toward mission work and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 5
  • Transparency & Controls: 100
  • Sustainability: 83
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 2.7%; rating input score 3
  • Program expense ratio: 8.7%; rating input score 9

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100

Sustainability

  • Operating margin: 68.6%; rating input score 95; 95th percentile among comparable filings
  • Total-asset coverage ratio: 14.21; rating input score 94; 94th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 33; 33rd percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 56; 56th percentile among comparable filings

Growth

  • Program expense growth: 0.5% per year; rating input score 100; 50th percentile among comparable filings
  • Revenue growth: 1.7% per year; rating input score 100; 59th percentile among comparable filings
  • Asset growth: 8.8% per year; rating input score 100; 69th percentile among comparable filings

Details

  • Where the money goes: 2.7% of revenue deployed · 8.7% of spending went to programs
  • Governance: Filed governance answers
  • Accomplishments: 1 filed program accomplishment · $2K in reported program spending
  • Leadership: top reported pay $0 · 12 people listed
  • Consistency: 9 of 9 current checks pass
  • Schedules: 3 filed schedules
  • Filing history: 3 filing years from 2022 to 2024
  • Contacts: How to reach this organization
  • Money network: Resolved incoming and outgoing counterparties from filed money flows.
  • 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 3/100.
  • High — Financial Efficiency: Program expense ratio scored 9/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 33/100.
  • Review — Sustainability: Officer compensation ratio scored 56/100.