FORE BATTEN FOUNDATION

EIN: 822661656 501(c)(3) Medical Research

CHAPEL HILL, NC

Total Revenue
$1,072,285
Total Expenses
$2,686,450
Total Assets
$383,105
Net Assets
$383,105
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
2017
Legal Domicile
AZ
Principal Officer
KAREN KAHN
Phone
4407086008
Tax Period
2024-01-01 to 2024-12-31

FORE BATTEN FOUNDATION, founded in 2017, is a community nonprofit in the Medical Research sector that reported $1.1M in total revenue in fiscal year 2024. Revenue fell 31% from the prior year — a significant decline worth monitoring. Expenses of $2.7M exceeded revenue, resulting in a 151% operating deficit.

Mission

TO FUND PIONEERING RESEARCH AND COMPASSIONATELY SUPPORT THE BATTEN COMMUNITY. THE ORGANIZATION WORKS TIRELESSLY TO GIVE CHILDREN WITH BATTEN DISEASE THE BEST POSSIBLE LIFE, TO SPREAD AWARENESS OF THE URGENCY TO FUND NEW TREATMENTS, AND TO HELP ALL FAMILIES AFFECTED BY BATTEN DISEASE.

Program Service Accomplishments

Program 1
Expenses: $346,157

THIS ORGANIZATION MADE GRANTS TO SEVERAL TAX-EXEMPT 501(C)(3) ORGANIZATIONS THAT ADVANCE THE OBJECTIVES OF THIS ORGANIZATION TO PROMOTE AWARENESS OF BATTEN DISEASE AS WELL AS TO PROMOTE OPPORTUNITIES...

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THIS ORGANIZATION MADE GRANTS TO SEVERAL TAX-EXEMPT 501(C)(3) ORGANIZATIONS THAT ADVANCE THE OBJECTIVES OF THIS ORGANIZATION TO PROMOTE AWARENESS OF BATTEN DISEASE AS WELL AS TO PROMOTE OPPORTUNITIES FOR SCIENTISTS TO COME TOGETHER TO CREATE AND FUND INNOVATIVE RESEARCH PROPOSALS TO WORK TOWARD A CURE FOR BATTEN DISEASE.

Program 2
Expenses: $2,286,277

THE FOREBATTEN FOUNDATION RECEIVED IND CLEARANCE FROM THE FOOD AND DRUG ADMINISTRATION TO PROCEED WITH THE CLINICAL INVESTIGATION FOR FBF-010 (ZEBRONKYSEN) PAVING THE WAY TO TREAT PATIENTS WITH THE...

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THE FOREBATTEN FOUNDATION RECEIVED IND CLEARANCE FROM THE FOOD AND DRUG ADMINISTRATION TO PROCEED WITH THE CLINICAL INVESTIGATION FOR FBF-010 (ZEBRONKYSEN) PAVING THE WAY TO TREAT PATIENTS WITH THE UNIQUE CLN3 C.569DUPG MUTATION. ZEBRONKYSEN IS PAVING A PATH TOWARDS A BETTER FUTURE FOR NEWLY DIAGNOSED CHILDREN AND WILL BE PART OF THE EVOLVING STORY OF PERSONALIZED MEDICINE. THIS EFFORT ALSO PROVIDES PROOF OF CONCEPT TO DEVELOP AN ASO TREATMENT FOR THE COMMON CLN3 MUTATION AND CREATES A ROADMAP TO FUTURE TREATMENTS.

Program 3

N/A

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $1,105,921
Program Service Revenue $0
Investment Income $10,598
Other Revenue $-44,234
TOTAL REVENUE $1,072,285

Expense Breakdown

Grants Paid $284,579
Salaries & Benefits $71,191
Fundraising Expenses $18,224
Program Expenses $2,632,434
Other Expenses $2,330,680
TOTAL EXPENSES $2,686,450

Year-over-Year Comparison

2024 2023 Change
Revenue $1,072,285 $1,550,288 -0.3%
Expenses $2,686,450 $1,725,984 +0.6%
Net Income $-1,614,165 $-175,696 +8.2%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Financial Health Indicators

Comprehensive financial analysis: Altman Z-Score, liquidity, solvency, sustainability, efficiency, and growth metrics

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Liquidity & Cash Position

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Governance

Voting Members
4
Independent Members
4
Employees
1
Volunteers
3

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
2
$0
Total Directors
4
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
DAVID KAHN DIRECTOR 4.00
Director
$0 $0 $0
KAREN KAHN PRESIDENT/CEO 10.00
Officer Director
$0 $0 $0
KATHRYN NIEDERER DIRECTOR 2.00
Director
$0 $0 $0
JENNIFER MCGINN DIRECTOR 2.00
Director
$0 $0 $0
MARLENA KAHN SECRETARY 1.00
Officer
$0 $0 $0
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
2024 $1,072,285 $2,686,450 $383,105 $-1,614,165
2023 $1,550,288 $1,725,984 $1,997,270 $-175,696
2022 $1,452,603 $1,160,011 $2,172,966 $292,592
2021 $1,570,342 $961,714 $1,880,374 $608,628
2020 $940,947 $601,648 $1,271,746 $339,299
2019 $603,678 $275,309 $932,447 $328,369
2018 $652,680 $239,849 $604,078 $412,831
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