DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA

EIN: 112519726 501(c)(3)

BOULDER, CO

Total Revenue
$3,150,804
Total Expenses
$3,631,440
Total Assets
$1,369,762
Net Assets
$1,260,462
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1979
Legal Domicile
NY
Principal Officer
BRETT KOPELAN
Phone
2128681573
Tax Period
2024-01-01 to 2024-12-31

DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA, founded in 1979, is a community nonprofit that reported $3.2M in total revenue in fiscal year 2024. Revenue surged 21% from the prior year, signaling strong growth momentum. Expenses of $3.6M exceeded revenue, resulting in a 15% operating deficit.

Mission

DEBRA IS DEDICATED TO FINDING A CURE FOR EBIDERMOLYSIS BULLOSA " EB" WHICH EFFECTS 1 OUT OF EVERY 50,000 LIVE BIRTHS IN THE UNITED STATES TODAY. EB IS A GENETICALLY BASED DISEASE CHARACTERIZED BY CHRONIC, PAINFULL BLISTERING. THE SKIN AND MUCOUS MEMBRANES ARE SO FRAGILE THAT THE SLIGHTEST TOUCH CAN CAUSE SEVERE BLISTERING INSIDE AND OUTSIDE THE BODY. PRESENT AT BIRTH, EB EFFECTS MEN AND WOMEN OF ALL RACES AND ETHNIC GROUPS, AND SOMETIMES, WHEN THERE IS NO FAMILY HISTORY. IT OCCURS AS THE RESULT OF A SPONTANEOUS GENETIC MUTATION. TODAY, THERE IS NO CURE OR TREATMENT FOR EB, EXCEPT DAILY WOUND CARE AND BANDAGING. GENETIC RESEARCH IS MAKING PROGRESS TOWARDS TREATMENTS AND A CURE.

Program Service Accomplishments

Program 1
Expenses: $464,510

PUBLIC AND PROFESSIONAL EDUCATION - EDUCATE THE PUBLIC & HEALTH PROFESSIONALS ABOUT DYSTROPHIC EPIDERMOLYSIS BULLOSA "EB"

Program 2
Expenses: $2,494,870

PATIENT & FAMILY SERVICES - PROVIDE SERVICES FOR THE PEOPLE WITH EB AND THEIR FAMILIES THROUGH NEWSLETTERS, COUNSELING, PEER SUPPORT SERVICES, CONFERENCES AND SEMINARS

Program 3
Expenses: $69,676

ADVOCACY - NETWORK WITH OTHER PROFESSIONAL ORGANIZATIONS AND MEET KEY LEGISLATORS TO INFORM THEM OF EB AND SECURE RESEARCH FUNDS

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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 $2,507,492
Program Service Revenue $0
Investment Income $-22,071
Other Revenue $665,383
TOTAL REVENUE $3,150,804

Expense Breakdown

Grants Paid $0
Salaries & Benefits $1,157,999
Fundraising Expenses $232,254
Program Expenses $3,261,310
Other Expenses $2,473,441
TOTAL EXPENSES $3,631,440

Year-over-Year Comparison

2024 2023 Change
Revenue $3,150,804 $2,604,819 +0.2%
Expenses $3,631,440 $1,572,705 +1.3%
Net Income $-480,636 $1,032,114 -1.5%
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
11
Independent Members
11
Employees
8
Volunteers
11

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
5
$314,360
Total Directors
11
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
BRETT KOPELAN EXECUTIVE DIRECTOR 40.0
Officer
$304,910 $9,450 $314,360
J ALEC ALEXANDER TREASURER 1.0
Officer Director
$0 $0 $0
RICHARD GALLAGHER CHAIR EMERITUS 1.0
Director
$0 $0 $0
ROBERT RYAN Ph D DIRECTOR 1.0
Director
$0 $0 $0
JOHN LEE SECRETARY 1.0
Officer Director
$0 $0 $0
WILLIAM CORNMAN DIRECTOR 1.0
Director
$0 $0 $0
JAMES WETRICH DIRECTOR 1.0
Director
$0 $0 $0
LESLIE RADER DIRECTOR 1.0
Director
$0 $0 $0
ANGELA CHRISTIANO PhD DIRECTOR 1.0
Director
$0 $0 $0
RYAN FULLMER President 1.0
Officer Director
$0 $0 $0
ROB RAYL Vice President 1.0
Officer Director
$0 $0 $0
Jouni Uitto Director 1.0
Director
$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
2025 No data No data No data No data
2024 $3,150,804 $3,631,440 $1,369,762 $-480,636
2023 $2,604,819 $1,572,705 $1,940,472 $1,032,114
2022 $3,356,992 $1,969,058 $2,090,353 $1,387,934
2021 $1,109,789 $1,672,683 $2,216,777 $-562,894
2020 $1,875,849 $1,367,432 $2,976,485 $508,417
2019 $1,561,298 $1,465,695 $2,407,080 $95,603
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