The Lilly and Blair Foundation

Nonprofit profile at a glance

EIN
933381308
IRS 990 coverage
2023–2024
Forms available
Form 990 2024
Location
Oakton, VA, USA
Phone
7175741348
Rating
86
Verdict
STRONG
Rating confidence
Standard
Sector
Nerve, Muscle and Bone Diseases

Reported finances

Revenue
$276,912
Expenses
$216,875
Assets
$274,932
Liabilities
$0

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

Leadership & pay

6 people listed

Executive titles in this filing

  • Katie Gregg (President)
  • Christopher Lorek (Vice President)

People named in this filing

  • Jay Coonan (Director)
  • Scott Chilson (Director)
  • Katie Gregg (President)

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 Lilly and Blair Foundation funds and coordinates research to accelerate treatment development for children affected by de novo spastic paraplegia SPG4, while fostering a collaborative and informed community.

What it reported doing in 2024

Gene Therapy Research Acceleration: Funded multiple academic research programs aimed at advancing AAV9 gene therapy for SPG4, including Drexel University (Baas Lab / Cyagen mouse model), Boston Childrens Hospital (DEF Lab), University of Massachusetts, and University Of Wisconsin.

Operating model

Revenue model
Donor-supported. 89% 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.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 76
  • Transparency & Controls: 100
  • Accountability: 88
  • Sustainability: 67
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 71.9%; rating input score 72
  • Program expense ratio: 91.8%; rating input score 92
  • Fundraising efficiency: $14.61 raised per $1 spent on fundraising; rating input score 49; 49th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 80th 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: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • 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: 21.7%; rating input score 75; 75th percentile among comparable filings
  • Total-asset coverage ratio: 1.27; rating input score 47; 47th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 80; 80th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 69; 69th percentile among comparable filings

Growth

  • Program expense growth: 200% per year; rating input score 100; 100th percentile among comparable filings
  • Revenue growth: 23.7% per year; rating input score 100; 90th percentile among comparable filings
  • Asset growth: 24.5% per year; rating input score 100; 88th percentile among comparable filings

Details

  • Where the money goes: 71.9% of revenue deployed · 91.8% of spending went to programs
  • Governance: 6 of 6 board members independent · 5 of 7 filing controls reported
  • Programs: 3 filed program accomplishments · $199K in reported program spending
  • Leadership: top reported pay $0 · 6 people listed
  • Consistency: 16 of 16 current checks pass
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 2 filing years from 2023 to 2024
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • 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 — Financial Efficiency: Fundraising efficiency scored 49/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 47/100.