Public Charity

NEUROFIBROMATOSIS MIDWEST

NEUROFIBROMATOSIS MIDWEST is a nonprofit organization categorized as Public Charity based in ST CHARLES, IL. Its most recent IRS filing (2025) reports revenue of $327K, expenses of $270K, total assets of $401K. Imperigo tracks 7 reported grant relationships connected to this organization totaling approximately $47K.

EIN: 222580173 ST CHARLES, IL Neurology & Neuroscience Research NTEE: H96 Latest filing: 2025
Total Revenue$327K
Total Expenses$270K
Total Assets$401K
Grant Records7
Funding Total$47K
Filing Years2021–2025

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.

Where $100 goes at Neurofibromatosis Midwest

How Neurofibromatosis Midwest divides every $100 it spends, from its own Form 990 filings, averaged across 8 years.

$76 Programs the work itself
$12 Management running the organization
$12 Fundraising raising the next dollar

Inside the $76 for programs

$73
Research/clinics/improved care Neurofibromatosis Midwest provides direct grants for research and research support
95% of program spending
$3
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…
5% of program spending
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Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

BOARD CHAIR Denise Dulceak
EXECUTIVE DI Diana Haberkamp
BOARD MEMBER Gail Mavrogenes
SECRETARY Lesli Wegner

Officer compensation and complete director data available with membership.

Top Grant Purposes

General Support
$42,084 5 grants
Unspecified
$5,000 1 grant

Financial Trends

Year Revenue Expenses Assets
2025 $327K $270K $401K
2024 $308K $253K $366K
2023 $241K $263K $294K
2022 $221K $218K $318K
2021 $210K $176K $351K

Between 2021 and 2025, reported annual revenue grew from $210K to $327K (+56%), with total assets most recently reported at $401K.

Interactive year-over-year charts and full filing details available with membership.

See the full picture for NEUROFIBROMATOSIS MIDWEST

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