Noonan Syndrome Foundation
Nonprofit profile at a glance
- EIN
- 461871620
- IRS 990-EZ coverage
- 2013–2024
- Forms available
- Form 990-EZ 2024
- Location
- Blue Springs, MO, USA
- Phone
- 8668758928
- Rating
- 88
- Verdict
- STRONG
- Rating confidence
- Moderate
- Sector
- Professional Societies, Associations
Reported finances
- Revenue
- $63,977
- Expenses
- $142,841
- Assets
- $208,010
- Liabilities
- $0
Source: IRS Form 990-EZ. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
7 people listed
Executive titles in this filing
- Cari Conant (Vice President)
- Tammy Bowers (President)
People named in this filing
- Amanda Brown (Treasurer)
- Cari Conant (Vice President)
- Tammy Bowers (President)
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
The mission of the Noonan Syndrome Foundation is to support, educate and advocate for those diagnosed with Noonan's Syndrome by supporting research for the development of effective treatments, and ultimately, a cure for the syndrome. Noonan's Syndrome is identified by a genetic mutation in the RAS/MAPK pathway and is expressed in many ways, over numerous systems in patients. The Noonan Syndrome Foundation supports patients and families by providing information online and in regular publications, holding regional events, conferences and support groups. Connecting patients and families to caregivers familiar with Noonan Syndrome is of the utmost importance ot the Foundation as well. Another goal is to increase public awareness of Noonan Syndrome to allow for accurate diagnosis by medical providers and to allow for those not affected by the syndrome to understand the challenges of those affected and to increase financial support
What it reported doing in 2024
2024 Noonan Syndrome foundation family conference. We hosted a meeting where we brought medical professionals familiar with NS to families to educate them and to offer support to each other. There were 275 attendees.
Operating model
- Revenue model
- Mixed. Its operating money came from several sources; no one source provided a clear majority.
- Distribution model
- Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Expenses are high relative to revenue and revenue has declined or grown slowly.
Rating breakdown
- Financial Efficiency: 100
- Transparency & Controls: 82
- Sustainability: 35
- Growth: 60
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 100%; rating input score 100
- Program expense ratio: 100%; rating input score 100
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
- Major donor itemization: Limited
Sustainability
- Operating margin: -123.3%; rating input score 7; 7th percentile among comparable filings
- Total-asset coverage ratio: 1.46; rating input score 57; 57th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 68; 68th percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 56; 56th percentile among comparable filings
Growth
- Program expense growth: 13.2% per year; rating input score 100; 76th percentile among comparable filings
- Revenue growth: -0.2% per year; rating input score 0; 50th percentile among comparable filings
- Asset growth: 9.5% per year; rating input score 100; 71st percentile among comparable filings
Details
- Where the money goes: 100% of revenue deployed · 100% of spending went to programs
- Governance: Filed governance answers
- Accomplishments: 2 filed program accomplishments · $143K in reported program spending
- Leadership: top reported pay $0 · 7 people listed
- Consistency: 9 of 9 current checks pass
- Schedules: 2 filed schedules
- Filing history: 5 filing years from 2013 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 — Sustainability: Operating margin scored 7/100.
- High — Growth: Revenue growth scored 0/100.
- Review — Sustainability: Total-asset coverage ratio scored 57/100.
- Review — Sustainability: Officer compensation ratio scored 56/100.