Cure Lbsl

Nonprofit profile at a glance

EIN
462829156
IRS 990 coverage
2018–2025
Forms available
Form 990 2025, Form 990-EZ 2017, Form 990-N 2016
Location
Arlington, VA, USA
Phone
2024874235
Rating
76
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$651,672
Expenses
$307,430
Assets
$1,315,374
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

8 people listed

Executive titles in this filing

  • MORGAN VOIGT (EXECUTIVE DIRECTOR)

Highest reported compensation

  • MORGAN VOIGT (EXECUTIVE DIRECTOR): $50,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Provide funding to rare disease research and support affected families

What it reported doing in 2025

Cure LBSL's primary mission is to fund critical research into Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation (LBSL), a rare genetic leukodystrophy. During 2025, the organization supported research initiatives designed to improve understanding of the disease, advance scientific knowledge of disease progression, and explore potential therapeutic approaches. Activities included support for natural history and qualitative patient studies as well as collaborations with academic and clinical research partners.

Operating model

Revenue model
Donor-supported. 97% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 60% for direct work, and 40% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - The filed numbers largely add up and a large share of total spending goes to programs. A relatively small share of available resources goes toward mission work and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 61
  • Transparency & Controls: 94
  • Accountability: 74
  • Sustainability: 80
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 48.9%; rating input score 49
  • Program expense ratio: 100%; rating input score 100
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 78th 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; 64th percentile among comparable filings
  • Governance controls: 3 of 8 controls in place; rating input score 38
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Fail
    • 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: 52.8%; rating input score 91; 91st percentile among comparable filings
  • Total-asset coverage ratio: 4.28; rating input score 82; 82nd percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 88; 88th percentile among comparable filings
  • Officer compensation ratio: 16.3%; rating input score 22; 22nd percentile among comparable filings

Growth

  • Program expense growth: 15.9% per year; rating input score 100; 73rd percentile among comparable filings
  • Revenue growth: 19.8% per year; rating input score 100; 82nd percentile among comparable filings
  • Asset growth: 32.1% per year; rating input score 100; 90th percentile among comparable filings

Details

  • Where the money goes: 48.9% of revenue deployed · 100% of spending went to programs
  • Governance: 7 of 7 board members independent · 3 of 8 filing controls reported
  • Programs: 2 filed program accomplishments · $307K in reported program spending
  • Leadership: top reported pay $50K · 8 people listed
  • Consistency: 23 of 23 current checks pass
  • Schedules: 6 filed schedules · includes major donors and grants
  • Filing history: 8 filing years from 2018 to 2025
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • 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: Mission deployment rate scored 49/100.
  • Moderate — Accountability: Governance controls: 4 of 7 not reported.
  • High — Sustainability: Officer compensation ratio scored 22/100.