The Snow Foundation

Nonprofit profile at a glance

EIN
455308117
IRS 990 coverage
2014–2024
Forms available
Form 990 2024, Form 990-EZ 2013, Form 990-N 2012
Location
Clayton, MO, USA
Phone
6364484134
Rating
62
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Public Foundations

Official website

Reported finances

Revenue
$607,564
Expenses
$237,983
Assets
$972,917
Liabilities
$-54

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

Leadership & pay

6 people listed

Executive titles in this filing

  • STEPHANIE S GEBEL (PRESIDENT)

Highest reported compensation

  • STEPHANIE S GEBEL (PRESIDENT): $60,000 total reported compensation
  • PATRICIA M GIBILISCO (PATIENT ADVOCACY LIAISON): $24,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The snow foundation is a collective voice for wolfram syndrome patients, working towards a cure for wolfram syndrome and developing novel therapies for diabetes, vision loss, hearing loss and neurodegeneration.wolfram syndrome supports and coordinates international collaborative research efforts. The foundation also provides valuable insight, resources, and support to the patients and theirfamilies. This empowers them with the knowledge necessary to participate in their care and positively impact their future.

What it reported doing in 2024

The foundation supports and coordinates international collaborative research efforts. The foundation is focused on fueling knowledge, speeding better treatments and symptom management therapies, and driving enhancements in the health care delivery for wolfram syndrome patients.the foundation also encourages the entire wolfram syndrome community to come together and share common life experiences, education and mutual aid. By providing these critical resources and support services, the foundation enables wolfram syndrome patients, their families and caregivers to powerfully advocate for what they need, when and how they need it.

Operating model

Revenue model
Donor-supported. 100% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 72% for direct work, and 28% 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: 69
  • Accountability: 60
  • Sustainability: 69
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 34%; rating input score 34
  • Program expense ratio: 86.9%; rating input score 87
  • Fundraising efficiency: $74.01 raised per $1 spent on fundraising; rating input score 83; 83rd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 85.7%; rating input score 86; 2nd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 91.3%; rating input score 91; 39th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 66.7%; rating input score 67; 14th percentile among comparable filings
  • Governance controls: 4 of 8 controls in place; rating input score 50
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Pass
    • 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: 60.8%; rating input score 95; 95th percentile among comparable filings
  • Total-asset coverage ratio: 4.09; rating input score 81; 81st percentile among comparable filings
  • Liabilities to assets ratio: Limited
  • Officer compensation ratio: 35.3%; rating input score 5; 5th percentile among comparable filings

Growth

  • Program expense growth: -2.7% per year; rating input score 0; 11th percentile among comparable filings
  • Revenue growth: 6.9% per year; rating input score 100; 54th percentile among comparable filings
  • Asset growth: 17.4% per year; rating input score 100; 77th percentile among comparable filings

Details

  • Where the money goes: 34% of revenue deployed · 86.9% of spending went to programs
  • Governance: 4 of 6 board members independent · 4 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $207K in reported program spending
  • Leadership: top reported pay $60K · 6 people listed
  • Consistency: 30 of 32 current checks pass · 2 findings to review
  • Schedules: 8 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 10 filing years from 2014 to 2024
  • Contacts: How to reach this organization
  • Money network: 3 filed money-flow records
  • 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 34/100.
  • High — Transparency & Controls: Foreign activity oversight: 7 of 8 not reported.
  • Review — Accountability: Governance controls: 3 of 7 not reported.
  • High — Growth: Program expense growth scored 0/100.
  • High — Sustainability: Officer compensation ratio scored 5/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Review — Transparency & Controls: Foreign grant itemization did not reconcile in the filed values.