Neurofibromatosis Midwest

Organization Overview

Neurofibromatosis Midwest is located in St Charles, IL. The organization was established in 1993. According to its NTEE Classification (H96) the organization is classified as: Neurology & Neuroscience Research, under the broad grouping of Medical Research and related organizations. As of 09/2022, Neurofibromatosis Midwest employed 6 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Neurofibromatosis Midwest is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 09/2022, Neurofibromatosis Midwest generated $220.7k in total revenue. The organization has seen a slow decline revenue. Over the past 7 years, revenues have fallen by an average of (2.8%) each year. All expenses for the organization totaled $218.1k during the year ending 09/2022. As we would expect to see with falling revenues, expenses have declined by (1.6%) per year over the past 7 years. You can explore the organizations financials more deeply in the financial statements section below.

Since 2018, Neurofibromatosis Midwest has awarded 19 individual grants totaling $323,542. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2022

Describe the Organization's Mission:

Part 3 - Line 1

EDUCATION AND SUPPORT FOR THOSE WITH NEUROFIBROMATOSIS.

Describe the Organization's Program Activity:

Part 3 - Line 4a

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.


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.


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Board, Officers & Key Employees

Name (title)Compensation
Denise Dulceak
Board Chair
$0
Diana Haberkamp
Executive Di
$0
Dena Hasselberg
Secretary
$0
Andy Ringo
Treasurer
$0
Peter Oswald Sr
Vice Chair
$0
Gail Mavrogenes
Board Member
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$87,223
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$96,698
Noncash contributions included in lines 1a–1f $10,058
Total Revenue from Contributions, Gifts, Grants & Similar$183,921
Total Program Service Revenue$0
Investment income $3,042
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $0
Net Income from Fundraising Events $32,499
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $1,227
Miscellaneous Revenue$0
Total Revenue $220,690

Grants Awarded

Over the last fiscal year, Neurofibromatosis Midwest has awarded $52,750 in support to 3 organizations.

Grant RecipientAmount

UNIVERSITY OF CHICAGOUNIVERSITY OF CHICAGO

Org PageRecipient Profile

Chicago, IL

PURPOSE: MAINTAIN STUDIES

$34,000

Washington, DC

PURPOSE: SUMMER CAMP

$12,500

UNIVERSITY OF MINNESOTA FOUNDATION

Org PageRecipient Profile

Minneapolis, MN

PURPOSE: MAINTAIN STUDIES

$6,250
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 5 grants that Neurofibromatosis Midwest has recieved totaling $10,925.

Awarding OrganizationAmount
American Online Giving Foundation Inc

Newark, DE

PURPOSE: GENERAL SUPPORT

$8,120
Fis Foundation Inc

Jacksonville, FL

PURPOSE: GENERAL CONTRIBUTION

$1,000
John Marshall Family Foundation

Palatine, IL

PURPOSE: UNRESTRICTED

$1,000
Amazonsmile Foundation

Seattle, WA

PURPOSE: GENERAL SUPPORT

$705
The Duke Energy Foundation

Charlotte, NC

PURPOSE: MATCHING GIFTS

$100
View Grant Recipient Profile

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