Nonprofit · EIN 22-2580173
NEUROFIBROMATOSIS MIDWEST
Tax-exempt · ST CHARLES, IL 60174
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| September 30, 2025 | 990 | $327,237 | $269,869 | $57,368 | $401,133 | $24,408 | $376,725 |
| September 30, 2024 | 990 | $307,665 | $252,673 | $54,992 | $366,270 | $951 | $365,319 |
| September 30, 2023 | 990 | $241,223 | $262,588 | -$21,365 | $293,598 | $874 | $292,724 |
Financial details: 990 for the year ended September 30, 2025
Revenue
- Contributions, gifts and grants
- $308,375
- Program service revenue
- $0
- Investment income
- $6,225
- Net income from fundraising events
- $11,596
- Net income from sales of inventory
- $1,041
- Other revenue
- $12,637
Expenses
- Grants and similar amounts paid
- $52,096
- Compensation of officers, directors and key employees
- $75,000
- Other salaries and wages
- $35,279
- Salaries, compensation and benefits (total)
- $118,715
- Professional fundraising fees
- $0
- Accounting fees
- $3,950
- Occupancy
- $16,349
- Travel
- $8,859
- Depreciation
- $857
- Program services (functional)
- $219,298
- Management and general (functional)
- $28,015
- Fundraising (functional)
- $22,556
Balance sheet and other
- Total assets, start of year
- $366,270
- Total assets, end of year
- $401,133
- Total liabilities, end of year
- $24,408
- Net assets, end of year
- $376,725
- Land, buildings and equipment
- $1,901
- Publicly traded securities
- $291,332
- Net assets without donor restrictions
- $376,725
- Gross receipts
- $343,199
- Employees
- 5
- Volunteers
- 40
- Year formed
- 1981
- State of legal domicile
- IL
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended September 30, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| DIANA HABERKAMP | EXECUTIVE DI Trustee or director, Officer | 40 | $75,000 |
| DENISE DULCEAK | BOARD CHAIR Trustee or director, Officer | 0.5 | $0 |
| GAIL MAVROGENES | BOARD MEMBER Trustee or director | 1 | $0 |
| LESLI WEGNER | SECRETARY Trustee or director, Officer | 0.5 | $0 |
990 for the year ended September 30, 2024: 5 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| DENISE DULCEAK | BOARD CHAIR Trustee or director, Officer | 1 | $0 |
| DIANA HABERKAMP | EXECUTIVE DI Trustee or director, Officer | 40 | $0 |
| GAIL MAVROGENES | BOARD MEMBER Trustee or director | 1 | $0 |
| ANDY RINGO | TREASURER Trustee or director, Officer | 1 | $0 |
| LESLI WEGNER | SECRETARY Trustee or director, Officer | 1 | $0 |
990 for the year ended September 30, 2023: 5 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| DENISE DULCEAK | BOARD CHAIR Trustee or director, Officer | 1 | $0 |
| DIANA HABERKAMP | EXECUTIVE DI Trustee or director, Officer | 40 | $0 |
| GAIL MAVROGENES | BOARD MEMBER Trustee or director | 1 | $0 |
| ANDY RINGO | TREASURER Trustee or director, Officer | 1 | $0 |
| LESLI WEGNER | VICE CHAIR Trustee or director, Officer | 1 | $0 |
Address and contacts
- Address (IRS master file)
- 473 DUNHAM RD STE 3, ST CHARLES, IL 60174-1427
- Principal officer (990 for 2024)
- DIANA HABERKAMP, 274 SHAWNEE CIRCLE, BARTLETT, IL 60103
- Signed the 990
- DIANA HABERKAMP, EXECUTIVE DIRECTOR
- Phone
- (630) 945-3562
- Website
- WWW.NFMIDWEST.ORG
- Return prepared by
- KOLNICKI PETERSON & WIRTH CPA'S
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.
Program accomplishments
- RESEARCH/CLINICS/IMPROVED CARE NEUROFIBROMATOSIS MIDWEST PROVIDES DIRECT GRANTS FOR RESEARCH AND RESEARCH SUPPORT. WE ALSO WORK WITH CLINICS IN OUR REGION TO IMPROVE CARE AND ACCESS TO CARE. ADDITIONALLY, WE WORK WITH THE NF COMMUNITY AND MANY OTHER RESOURCES ON ADDITIONAL PROGRAMS OR INITIATIVES TO IMPROVE THE QUALITY OF LIFE AND CARE FOR NF PATIENTS AND THEIR FAMILIES.Expenses $209,298 · grants $42,096
- 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.Expenses $10,000 · grants $10,000
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in September, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | September 30, 2026 | February 16, 2027 | Not due yet |
| 2024 | September 30, 2025 | February 17, 2026 | 990 on file |
| 2023 | September 30, 2024 | February 18, 2025 | 990 on file |
IRS record
- EIN
- 22-2580173
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1993
- Accounting year ends
- September
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H96Z)
- Assets (IRS master file)
- $401,133
- Income (IRS master file)
- $343,199
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | September 2025 | $327,237 | $269,869 | $401,133 | XML |
| 990 | September 2024 | $307,665 | $252,673 | $366,270 | IRS |
| 990 | September 2023 | $241,223 | $262,588 | $293,598 | XML |
| 990 | September 2022 | $220,690 | $218,142 | $317,579 | IRS |
| 990 | September 2021 | – | – | – | IRS |
| 990 | September 2020 | – | – | – | IRS |
| 990 | September 2019 | – | – | – | IRS |
| 990 | September 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 22-2580173).
Questions about NEUROFIBROMATOSIS MIDWEST
- What is the EIN of NEUROFIBROMATOSIS MIDWEST?
- The employer identification number (EIN) of NEUROFIBROMATOSIS MIDWEST is 22-2580173.
- Is NEUROFIBROMATOSIS MIDWEST tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1993.
- Are donations to NEUROFIBROMATOSIS MIDWEST tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does NEUROFIBROMATOSIS MIDWEST file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of NEUROFIBROMATOSIS MIDWEST due?
- The return for tax year 2025 (the year ending September 30, 2026) is due February 16, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NEUROFIBROMATOSIS MIDWEST last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended September 2025.
- Who is the principal officer of NEUROFIBROMATOSIS MIDWEST?
- The 990 for the year ended September 30, 2025 names DIANA HABERKAMP.
- Who are the officers and directors of NEUROFIBROMATOSIS MIDWEST?
- The 990 for the year ended September 30, 2025 lists 4 people; 1 received compensation from the organization, the highest $75,000 (DIANA HABERKAMP, EXECUTIVE DI).
- How much revenue does NEUROFIBROMATOSIS MIDWEST have?
- On its 990 for the year ended September 30, 2025 it reported revenue of $327,237, expenses of $269,869 and total assets of $401,133 at year end.
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