Neurofibromatosis Midwest
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.
Neurofibromatosis Midwest at a glance
In short: Neurofibromatosis Midwest gave $10K across 1 grant in 2025 (avg $10K), mostly in District of Columbia. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $10,000
- +0.0% vs 2024
- Grants made (2025)
- 1
- +0.0% vs 2024
- Average grant
- $10,000
- +0.0% vs 2024
- Median grant
- $10,000
- Total assets
- $401,133
- +9.5% vs 2024
- Primary geography
- District of Columbia (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Neurofibromatosis Midwest
Open Grants
1 open opportunity from Neurofibromatosis Midwest
Who Neurofibromatosis Midwest funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was Brainy Camps ($10K).
Grant Size Distribution
10 grants across all recorded years
The most common grant size was under $50K: 10 grants of 10 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2025 grant dollars on its one itemized grant.
Cities
How Neurofibromatosis Midwest gives
- Giving fell 81% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2025, annual grant giving ranged from $10K (2024) to $56K (2023). In 2025 it made 1 grant totaling $10K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Brainy Camps Washington, DC | Summer Camp | $10,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $401,133 | $327,237 | $269,869 | $10,000 | 1 | $6,225 |
| 2024 | $366,270 | $307,665 | $252,673 | $10,000 | 1 | $8,627 |
| 2023 | $293,598 | $241,223 | $262,588 | $56,300 | 3 | $7,244 |
| 2022 | $317,579 | $220,690 | $218,142 | $52,750 | 3 | $3,042 |
| 2021 | $351,353 | $209,965 | $175,928 | $22,500 | 2 | $2,121 |
| 2020 | $332,706 | $179,571 | $214,976 | $37,329 | 3 | $4,700 |
| 2019 | $350,786 | $257,121 | $209,751 | $23,000 | 2 | $5,725 |
About Neurofibromatosis Midwest
Based on IRS filings
Neurofibromatosis Midwest is a public charity focused on Medical Research, based in St Charles, IL. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $401K in total assets. In 2025, it awarded 1 grant totaling $10K. Net investment income was $6K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Neurofibromatosis Midwest is led by Denise Dulceak, Board Chair on every filing since 2019; 1 of 4 officers listed in 2025 is compensated.
Officers on the 2025 filing
Denise Dulceak
Board Chair
On filings since 2019
0.5 hrs/week
No compensation reported
Diana Haberkamp
Executive Di
On filings since 2019
40 hrs/week
$75K (2025)
Gail Mavrogenes
Board Member
On filings since 2019
1 hr/week
No compensation reported
Lesli Wegner
Secretary
Board Member → Vice Chair, 2023
Vice Chair → Secretary, 2024
On filings since 2019
0.5 hrs/week
No compensation reported
Former officers (4)
- Former: Andy Ringo (2022–2024) — Treasurer
- Former: Dena Hasselberg (2019–2022) — Secretary
- Former: Peter Oswald Sr. (2019–2022) — Vice Chair
- Former: Gordon Cummings (2019–2021) — Treasurer
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $75K, to Diana Haberkamp (Executive Di).
Frequently asked questions about Neurofibromatosis Midwest
How much does Neurofibromatosis Midwest give each year?
Neurofibromatosis Midwest gave $10K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $10K across 1 grant.
How large is Neurofibromatosis Midwest?
Neurofibromatosis Midwest reported $401K in total assets on its 2025 IRS Form 990. Its revenue that year was $327K.
What is Neurofibromatosis Midwest?
Neurofibromatosis Midwest is a public charity focused on Medical Research, based in St Charles, IL. It holds $401K in total assets as of 2025.
Where does Neurofibromatosis Midwest operate?
Neurofibromatosis Midwest has awarded grants in District of Columbia, Illinois, Massachusetts, Minnesota, Wisconsin.
What is Neurofibromatosis Midwest's EIN?
Neurofibromatosis Midwest's EIN (Employer Identification Number) is 22-2580173. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2019 (received by the IRS March 10, 2020)
- Updated Form 990 for fiscal year 2021 (received by the IRS March 4, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS March 6, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS February 27, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS May 12, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS August 13, 2026)
- IRS filings on file for fiscal years 2020–2024
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Browse active grant opportunities in Neurofibromatosis Midwest's focus areas in our free grants database
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Neurofibromatosis Midwest down — hundreds of funders to go?