NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS

EIN: 371112496 501(c)(3) Diseases & Disorders

FAIRVIEW HEIGHTS, IL

Total Revenue
$1,229,652
Total Expenses
$1,203,383
Total Assets
$4,790,999
Net Assets
$4,692,677
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1981
Legal Domicile
IL
Principal Officer
KARL NELSEN
Phone
6185662020
Tax Period
2024-01-01 to 2024-12-31

NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS, founded in 1981, is a community nonprofit in the Diseases & Disorders sector that reported $1.2M in total revenue in fiscal year 2024. Net assets of $4.7M represent 46 months of operating reserves.

Mission

TO EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS THROUGH EDUCATION, SUPPORT, AND RESEARCH.

Program Service Accomplishments

Program 1
Expenses: $532,415 Revenue: $10,275

SUPPORT - NFED PUBLISHES HIGH QUALITY INFORMATION TO PROVIDE FAMILIES WITH KNOWLEDGE THAT WILL INCREASE THEIR QUALITY OF LIFE. INFORMATION IS SHARED THROUGH THE FIRST CONNECT PROGRAM, A WEB SITE...

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SUPPORT - NFED PUBLISHES HIGH QUALITY INFORMATION TO PROVIDE FAMILIES WITH KNOWLEDGE THAT WILL INCREASE THEIR QUALITY OF LIFE. INFORMATION IS SHARED THROUGH THE FIRST CONNECT PROGRAM, A WEB SITE, MEDICAL/DENTAL GUIDE SERIES, AND CONFERENCES. THE NATIONAL FAMILY CONFERENCE IS THE NFED'S HALLMARK PROGRAM BRINGING ENTIRE FAMILIES TOGETHER TO LEARN, SHARE, AND NETWORK WITH ONE ANOTHER AND WITH EXPERT CARE PROVIDERS. AFFECTED CHILDREN AND THEIR SIBLINGS ATTEND KIDS CAMP AT THE CONFERENCES WHERE THEY PARTICIPATE IN EDUCATIONAL AND SOCIAL ACTIVITIES WITH OTHER CHILDREN LIKE THEM TO DEVELOP SELF-ESTEEM. THE NFED PROVIDES FINANCIAL ASSISTANCE TO INDIVIDUALS TO ATTEND THE FAMILY CONFERENCE. THE NFED'S FAMILY-TO-FAMILY NETWORK CONNECTS FAMILIES WITH A CARING LIAISON IN THEIR REGION WHO CAN PROVIDE MORAL SUPPORT, INFORMATION AND PRACTICAL ADVICE, GUIDANCE, AND RESOURCES.

Program 2
Expenses: $254,587 Revenue: $0

TREATMENT - NFED'S PATIENT CARE COUNCIL, COMPRISED OF MEDICAL AND DENTAL EXPERTS, OVERSEES THE NFED'S INITIATIVES TO IMPROVE TREATMENT OF ECTODERMAL DYSPLASIAS. THE NFED TEACHES CARE PROVIDERS HOW TO...

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TREATMENT - NFED'S PATIENT CARE COUNCIL, COMPRISED OF MEDICAL AND DENTAL EXPERTS, OVERSEES THE NFED'S INITIATIVES TO IMPROVE TREATMENT OF ECTODERMAL DYSPLASIAS. THE NFED TEACHES CARE PROVIDERS HOW TO DIAGNOSE AND TREAT THE RARE DISORDERS THROUGH PROFESSIONAL SYMPOSIA AND GRAND ROUNDS AT UNIVERSITIES. THE NFED ADVOCATES FOR IMPROVING ACCESS TO CARE WITH SPONSORING LEGISLATION TO COVER CONGENITAL ANOMALIES, AND COLLABORATING WITH UNIVERSITIES, GOVERNMENT, PATIENT HEALTH ORGANIZATIONS. AFFECTED INDIVIDUALS CAN RECEIVE MORE AFFORDABLE CARE FROM EXPERIENCED TEAMS OF DENTISTS IN TREATMENT OF ECTODERMAL DYSPLASIAS AT NFED DENTAL TREATMENT CENTERS IN THE U.S. THE NFED ALSO HELPS FAMILIES PAY FOR NEEDED CARE THROUGH THE TREATMENT ASSISTANCE PROGRAM AND INSURANCE COACHING.

Program 3
Expenses: $260,861 Revenue: $0

RESEARCH - NFED'S SCIENTIFIC ADVISORY COUNCIL OVERSEES THE NFED'S RESEARCH INITIATIVES, AIMED TO IMPROVE THE HEALTH AND QUALITY OF LIFE OF AFFECTED INDIVIDUALS BY FINDING MANAGEMENT SOLUTIONS AND...

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RESEARCH - NFED'S SCIENTIFIC ADVISORY COUNCIL OVERSEES THE NFED'S RESEARCH INITIATIVES, AIMED TO IMPROVE THE HEALTH AND QUALITY OF LIFE OF AFFECTED INDIVIDUALS BY FINDING MANAGEMENT SOLUTIONS AND, EVENTUALLY, FINDING CURES FOR ECTODERMAL DYSPLASIAS. THE NFED ADVANCES RESEARCH THROUGH ADVOCACY AND PARTNERSHIPS WITH ORGANIZATIONS SUCH AS THE NATIONAL INSTITUTE OF HEALTH. THE NFED PROVIDES SEEDS FUNDS TO RESEARCHERS, PROVIDES THEM WITH ACCESS TO AFFECTED INDIVIDUALS, AND SHARES INFORMATION TO LAUNCH LARGER PROJECTS. NFED IS DEVELOPING A WEB-BASED ECTODERMAL DYSPLASIAS INTERNATIONAL REGISTRY TO SERVE AS A REPOSITORY OF GENETIC AND CLINICAL INFORMATION AND FACILITATES COMMUNICATION AMONG SCIENTISTS WHO STRIVE TO ADVANCE RESEARCH ON ECTODERMAL DYSPLASIAS. THE NFED ALSO SPONSORS SCIENTIFIC MEETINGS TO INCREASE UNDERSTANDING OF THE DISORDERS.

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Trantor Score

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $971,012
Program Service Revenue $10,275
Investment Income $241,442
Other Revenue $6,923
TOTAL REVENUE $1,229,652

Expense Breakdown

Grants Paid $14,325
Salaries & Benefits $628,902
Fundraising Expenses $122,778
Program Expenses $1,047,863
Other Expenses $560,156
TOTAL EXPENSES $1,203,383

Year-over-Year Comparison

2024 2023 Change
Revenue $1,229,652 $1,161,405 +0.1%
Expenses $1,203,383 $1,079,785 +0.1%
Net Income $26,269 $81,620 -0.7%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
13
Independent Members
13
Employees
7
Volunteers
425

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
4
$0
Total Directors
13
$0
Key Employees
0
$0
Highest Compensated
1
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
KARL NELSEN PRESIDENT 5.00
Officer Director
$0 $0 $0
CHARLES RICHTER DIRECTOR 1.00
Director
$0 $0 $0
KEITH THROM SECRETARY 1.00
Officer Director
$0 $0 $0
RICHARD STRATZ DIRECTOR 1.00
Director
$0 $0 $0
KRISTA BASILE DIRECTOR 1.00
Director
$0 $0 $0
ROY MOFFITT JR DIRECTOR 1.00
Director
$0 $0 $0
MARIANNE VERMEER TREASURER 1.00
Officer Director
$0 $0 $0
J TIMOTHY WRIGHT DDS MS DIRECTOR 1.00
Director
$0 $0 $0
ANIL VORA VICE PRESIDENT 10.00
Officer Director
$0 $0 $0
RUTH GEISMAR AD HOC ADVISOR 1.00
Director
$0 $0 $0
JACK KRIZ DIRECTOR 1.00
Director
$0 $0 $0
SOREN ROE DIRECTOR 1.00
Director
$0 $0 $0
BILL WILKINSON DIRECTOR 1.00
Director
$0 $0 $0
MARY FETE EXECUTIVE DIRECTOR 40.00
Highest
$128,350 $0 $128,350
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 No data No data No data No data
2024 $1,229,652 $1,203,383 $4,790,999 $26,269
2023 $1,161,405 $1,079,785 $4,529,323 $81,620
2022 $1,493,211 $1,083,870 $3,999,579 $409,341
2021 $1,968,542 $885,354 $4,339,643 $1,083,188
2020 $995,618 $731,772 $3,174,642 $263,846
2019 $1,078,711 $849,033 $2,717,658 $229,678
2018 $909,237 $650,400 $2,216,012 $258,837
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