Spina Bifida of Western New York Inc

Nonprofit profile at a glance

EIN
222417590
IRS 990 coverage
2012–2025
Forms available
Form 990 2025, Form 990-EZ 2020
Location
Middleport, NY, USA
Phone
7162553254
Rating
67
Verdict
SUPPORTED
Rating confidence
Moderate

Official website

Reported finances

Revenue
$108,114
Expenses
$18,345
Assets
$565,672
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

4 people listed

Executive titles in this filing

  • Nicholas Heilig (President)
  • Kristi Leone (Vice President)

People named in this filing

  • Nicholas Heilig (President)
  • Kristi Leone (Vice President)
  • Cynthia Carlson (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 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

To empower people affected by Spina Bifida & other related conditions to live full & enriched lives by offering a community of strong relationships, support & education.

What it reported doing in 2025

Family/Individual Support Activities - ongoing throughout the year. Activities include recreational and social group activities for youth and adults to promote socialization, networking, public awareness and disability education.

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

SUPPORTED - The filed numbers largely add up and program spending has grown recently. A relatively small share of available resources goes toward mission work and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 52
  • Transparency & Controls: 82
  • Accountability: 58
  • Sustainability: 92
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 57.4%; rating input score 57
  • Program expense ratio: 61%; rating input score 61
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 90.9%; rating input score 91; 15th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Limited
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 0 of 7 controls in place; rating input score 0
    • Conflict-of-interest policy: Fail
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Fail
    • Board meeting minutes documented: Fail
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 83%; rating input score 98; 98th percentile among comparable filings
  • Total-asset coverage ratio: 30.84; rating input score 98; 98th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 77; 77th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 67; 67th percentile among comparable filings

Growth

  • Program expense growth: 8.5% per year; rating input score 100; 63rd percentile among comparable filings
  • Revenue growth: 5.9% per year; rating input score 100; 52nd percentile among comparable filings
  • Asset growth: 7.8% per year; rating input score 100; 56th percentile among comparable filings

Details

  • Where the money goes: 57.4% of revenue deployed · 61% of spending went to programs
  • Governance: 8 of 8 board members independent · 0 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $11K in reported program spending
  • Leadership: top reported pay $0 · 4 people listed
  • Consistency: 17 of 18 current checks pass · 1 finding to review
  • Schedules: 3 filed schedules
  • Filing history: 6 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • 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.

  • Review — Financial Efficiency: Mission deployment rate scored 57/100.
  • High — Accountability: Governance controls: 6 of 6 not reported.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.