Epidermolysis Bullosa Medical Research Foundation

Nonprofit profile at a glance

EIN
943130081
IRS 990 coverage
2010–2024
Forms available
Form 990 2024, Form 990-T 2020
Location
Los Angeles, CA, USA
Phone
3109949237
Rating
79
Verdict
SUPPORTED
Rating confidence
Moderate

Official website

Reported finances

Revenue
$779,723
Expenses
$728,259
Assets
$4,111,020
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

5 people listed

Executive titles in this filing

  • LYNN ANDERSON (FOUNDER, PRESIDENT EMERITUS)
  • ANDREA PETT-JOSEPH (PRESIDENT/EXECUTIVE DIRECTOR)

People named in this filing

  • LYNN ANDERSON (FOUNDER, PRESIDENT EMERITUS)
  • ANDREA PETT-JOSEPH (PRESIDENT/EXECUTIVE DIRECTOR)
  • PAUL JOSEPH (CHIEF FINANCIAL OFFICER)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The primary purpose of the organization is to fund medical research to find a cure for epidermolysis bullosa. Epidermolysis bullosa medical research foundation funds various research organizations across the united states & internationally for children's health.

What it reported doing in 2024

The ebmrf is dedicated to finding a cure for epidermolysis bullosa by funding the best cutting edge and innovative research and seeking out new researchers and scientists at america and europe's top institutions. Through our ongoing funding of research studies and clinical trials at acclaimed universities, 16 eb clinical research consortium (ebcrc) sites and through our annual fundraisers, we are committed to funding a cure and sucessful treatments for eb. Grants are evaluated and once approved, are funded on a 1 year basis, and are subject to project milestones. Multi-year grants are reviewed annually and evaluated on their progress and our available funding. All grants include a 5% limit on indirect costs.

Operating model

Revenue model
Donor-supported. 82% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 100% of its reported program spending out as grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and program spending has declined or grown slowly.

Rating breakdown

  • Financial Efficiency: 92
  • Transparency & Controls: 73
  • Accountability: 70
  • Sustainability: 71
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 91.3%; rating input score 91
  • Program expense ratio: 95.8%; rating input score 96
  • Fundraising efficiency: $118.75 raised per $1 spent on fundraising; rating input score 88; 88th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 90.9%; rating input score 91; 8th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Limited
    • Conducts field audits: Limited
    • May suspend future funding: Limited
    • Requires financial reports: Limited
    • Conducts site visits: Limited
    • Requires grant agreements: Limited
    • May require repayment: Limited
  • Grant itemization coverage: 99.3%; rating input score 99; 49th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 2 of 7 controls in place; rating input score 29
    • Conflict-of-interest policy: Fail
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 6.6%; rating input score 54; 54th percentile among comparable filings
  • Total-asset coverage ratio: 5.64; rating input score 86; 86th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 91; 91st percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 81; 81st percentile among comparable filings

Growth

  • Program expense growth: -7.1% per year; rating input score 0; 6th percentile among comparable filings
  • Revenue growth: 0% per year; rating input score 100; 15th percentile among comparable filings
  • Asset growth: 4.4% per year; rating input score 100; 36th percentile among comparable filings

Details

  • Where the money goes: 91.3% of revenue deployed · 95.8% of spending went to programs
  • Governance: 5 of 5 board members independent · 2 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $697K in reported program spending
  • Leadership: top reported pay $0 · 5 people listed
  • Consistency: 19 of 20 current checks pass · 1 finding to review
  • Schedules: 7 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 14 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 7 filed money-flow records
  • Related organizations: 6 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Accountability: Governance controls: 4 of 6 not reported.
  • High — Growth: Program expense growth scored 0/100.
  • Review — Sustainability: Operating margin scored 54/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.