Lyme Disease Biobank Foundation

Nonprofit profile at a glance

EIN
473975911
IRS 990 coverage
2016–2024
Forms available
Form 990 2024
Location
Portland, OR, USA
Phone
5038634494
Rating
76
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Specifically Named Diseases

Official website

Reported finances

Revenue
$745,615
Expenses
$778,918
Assets
$280,534
Liabilities
$299,525

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

Leadership & pay

4 people listed

Executive titles in this filing

  • LIZ HORN (PRESIDENT)

Highest reported compensation

  • LINDA GIAMPA (DIRECTOR): $276,479 total reported compensation
  • WENDY ADAMS (TREASURER): $192,000 total reported compensation
  • LIZ HORN (PRESIDENT): $165,495 total reported compensation

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

Overview

Mission

To advance knowledge and facilitate research of the pathogenesis, diagnosis and treatment of lyme disease and other tick-borne infections.

What it reported doing in 2024

The lyme disease biobank, sponsored by bay area lyme foundation, is a collection of humanbiological samples that facilitates research of lyme disease and other tick-borne infections. By collecting blood and urine from patients with early-stage lyme disease and persistent lyme disease, as well as tissue samples from late-stage lyme patients, this important program will help dramatically improve research efforts to accelerate medical breakthroughs in the understanding, diagnosis and treatment of lyme disease and other tick-borne infections. Currently, there are 106 research projects relying on biobank samples. These projects are helping to pave the way for new diagnostics and therapeutics, as well as making strides to improve our understanding of lyme and other tick-borne infections. Through the end of 2024, we have collected samples from > 1250 participants, and more than 23,050 samples were shipped to researchers. Our persistent lyme cohort now includes 154 participants. Additionally, lyme disease biobank collaborates with the national disease research interchange (ndri) for the collection of surgical and post-mortem tissue samples, and partners with mylymedata.org, a project of lymedisease.org, to pair samples with clinical information that can further enhance research. In 2024, tissue was collected from 12 donors: 6 post-mortem donors and 6 surgeries. Since 2019, tissue has been collected from 23 post-mortem donors and 21 surgical donors.

Operating model

Revenue model
Affiliate-supported. 94% of the money available for current operations came from contributions from related organizations.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. A relatively small share of voting board members are independent and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 99
  • Transparency & Controls: 70
  • Accountability: 52
  • Sustainability: 19
  • Growth: 80

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 98.5%; rating input score 98
  • Fundraising efficiency: $7,376.77 raised per $1 spent on fundraising; rating input score 100; 100th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 1 of 6 controls in place; rating input score 17
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 33.3%; rating input score 33; 10th percentile among comparable filings
  • Governance controls: 7 of 9 controls in place; rating input score 78
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Fail
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -4.5%; rating input score 25; 25th percentile among comparable filings
  • Total-asset coverage ratio: 0.36; rating input score 17; 17th percentile among comparable filings
  • Liabilities to assets ratio: 1.07; rating input score 5; 5th percentile among comparable filings
  • Officer compensation ratio: 22.4%; rating input score 12; 12th percentile among comparable filings

Growth

  • Program expense growth: 5.3% per year; rating input score 100; 44th percentile among comparable filings
  • Revenue growth: 3% per year; rating input score 100; 31st percentile among comparable filings
  • Asset growth: -12.3% per year; rating input score 0; 3rd percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 98.5% of spending went to programs
  • Governance: 1 of 3 board members independent · 7 of 9 filing controls reported
  • Programs: 1 filed program accomplishment · $767K in reported program spending
  • Leadership: top reported pay $276K · 4 people listed · 1 of 6 pay-setting controls reported
  • Consistency: 17 of 17 current checks pass
  • Schedules: 6 filed schedules · includes major donors and executive pay
  • Filing history: 9 filing years from 2016 to 2024
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • Related organizations: 2 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.

  • Moderate — Accountability: Independent voting board scored 33/100.
  • Review — Accountability: Governance controls: 2 of 9 not reported.
  • High — Sustainability: Operating margin scored 25/100.
  • High — Sustainability: Total-asset coverage ratio scored 17/100.
  • High — Growth: Asset growth scored 0/100.
  • High — Sustainability: Liabilities to assets ratio scored 5/100.
  • High — Sustainability: Officer compensation ratio scored 12/100.