Neurofibromatosis Midwest

Nonprofit profile at a glance

EIN
222580173
IRS 990 coverage
2017–2024
Forms available
Form 990 2024
Location
St Charles, IL, USA
Phone
6309453562
Rating
79
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Neurology, Neuroscience Research

Official website

Reported finances

Revenue
$327,237
Expenses
$269,869
Assets
$401,133
Liabilities
$24,408

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

Leadership & pay

4 people listed

Highest reported compensation

  • DIANA HABERKAMP (EXECUTIVE DI): $75,000 total reported compensation

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

Overview

Mission

To improve the lives of children, adults, and families impacted by neurofibromatosis by focusing on and improving clinics, awareness, research, education and support in the states of Illinois, Indiana, Iowa, Kentucky, Wisconsin, and the eastern half of Missouri.

What it reported doing in 2024

Support/education/awareness neurofibromatosis midwest provides education to individuals and families with neurofibromatosis, to the medical community and to the public through an annual symposium; smaller local meetings; and printed and online materials. We provide free packets of information to newly diagnosed families and phone and online support. An annual grant is provided to send children with nf to camp. We also provide materials and opportunities to raise awareness.

Operating model

Revenue model
Donor-supported. 95% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 69% for direct work, 24% for grants, and 7% for affiliated organizations.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 70
  • Transparency & Controls: 84
  • Accountability: 90
  • Sustainability: 53
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 67.9%; rating input score 68
  • Program expense ratio: 81.3%; rating input score 81
  • Fundraising efficiency: $13.67 raised per $1 spent on fundraising; rating input score 48; 48th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 94.1%; rating input score 94; 27th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 74.1%; rating input score 74; 47th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 6 of 8 controls in place; rating input score 75
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Fail
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 17.5%; rating input score 71; 71st percentile among comparable filings
  • Total-asset coverage ratio: 1.49; rating input score 51; 51st percentile among comparable filings
  • Liabilities to assets ratio: 0.06; rating input score 31; 31st percentile among comparable filings
  • Officer compensation ratio: 27.8%; rating input score 12; 12th percentile among comparable filings

Growth

  • Program expense growth: 1.5% per year; rating input score 100; 37th percentile among comparable filings
  • Revenue growth: 3.7% per year; rating input score 100; 45th percentile among comparable filings
  • Asset growth: 2.3% per year; rating input score 100; 35th percentile among comparable filings

Details

  • Where the money goes: 67.9% of revenue deployed · 81.3% of spending went to programs
  • Governance: 3 of 3 board members independent · 6 of 8 filing controls reported
  • Programs: 2 filed program accomplishments · $219K in reported program spending
  • Leadership: top reported pay $75K · 4 people listed
  • Consistency: 36 of 37 current checks pass · 1 finding to review
  • Schedules: 7 filed schedules · includes major donors and grants
  • Filing history: 8 filing years from 2017 to 2024
  • Contacts: How to reach this organization
  • Money network: 2 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: Fundraising efficiency scored 48/100.
  • Review — Accountability: Governance controls: 2 of 8 not reported.
  • Review — Sustainability: Total-asset coverage ratio scored 51/100.
  • High — Sustainability: Officer compensation ratio scored 12/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Moderate — Sustainability: Liabilities to assets ratio scored 31/100.