LGS Foundation

Legal name: LGS Foundation Inc

Nonprofit profile at a glance

EIN
262051377
IRS 990 coverage
2013–2024
Official website data refreshed
Sep 2026
Forms available
Form 990 2024, Form 990-EZ 2012, Form 990-N 2009
Location
San Diego, CA, USA
Phone
7183743800
Rating
82
Verdict
STRONG
Rating confidence
Moderate
Sector
Specifically Named Diseases

Official website

Reported finances

Revenue
$1,248,197
Expenses
$1,565,600
Assets
$984,047
Liabilities
$260,544

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

Leadership & pay

8 people listed

Executive titles in this filing

  • Tracy Dixon-Salazar PhD (Executive Director)

Highest reported compensation

  • Tracy Dixon-Salazar PhD (Executive Director): $132,498 total reported compensation
  • Amber Mathas (Sr Director of Operations): $94,661 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 improve the lives of those impacted by Lennox-Gastaut Syndrome (LGS) through support, education, advocacy, and research.

What it reported doing in 2024

The LGS Foundation organized its biennial International Family & Professional Conference, hosting three days of educational, scientific, and community-building sessions for more than 350 attendees, including families, clinicians, scientists, allied health providers, and industry partners around the world. The conference featured 18 expert-led educational sessions, six interactive clinical and research workshops, and breakout groups on sleep management, SUDEP prevention, behavioral and cognitive therapies, and transition planning to adult care. Dedicated family engagement programming included a Sib Camp for siblings, full inclusion of individuals with LGS, and caregiver roundtables to share lived expertise and foster peer connections. LGS Family and Professional Conference: Additionally, the conference provided access to one-on-one consultations with renowned epilepsy experts, allowing families to ask questions about diagnosis, therapies, genetic testing, and individualized care strategies. An on-site resource fair, supported by 14 partner organizations and sponsors, gave participants direct access to information on clinical trials, assistive technologies, and community services. The Foundation awarded 168 travel scholarships, 84 for individuals who have never attended the conference, and provided accessibility services to ensure the event was inclusive and accessible to families who could not attend. Conference presentations were recorded and distributed post-event, with over 6,500 views and ongoing access supporting lifelong learning for stakeholders unable to attend in person. This multifaceted event continues to advance the LGS Foundations goal of nurturing a well-informed, resilient, and interconnected global community.

Operating model

Revenue model
Donor-supported. 92% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 89% 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

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing does not identify recipients for some grant dollars and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 92
  • Transparency & Controls: 77
  • Accountability: 82
  • Sustainability: 18
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 88.1%; rating input score 88
  • Fundraising efficiency: $21.48 raised per $1 spent on fundraising; rating input score 60; 60th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.3%; rating input score 93; 22nd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 49.7%; rating input score 50; 29th 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 9 controls in place; rating input score 56
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • 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: -25.4%; rating input score 7; 7th percentile among comparable filings
  • Total-asset coverage ratio: 0.63; rating input score 29; 29th percentile among comparable filings
  • Liabilities to assets ratio: 0.26; rating input score 27; 27th percentile among comparable filings
  • Officer compensation ratio: 14.5%; rating input score 24; 24th percentile among comparable filings

Growth

  • Program expense growth: 19.6% per year; rating input score 100; 82nd percentile among comparable filings
  • Revenue growth: 17.2% per year; rating input score 100; 82nd percentile among comparable filings
  • Asset growth: 16.9% per year; rating input score 100; 76th percentile among comparable filings

Details

  • What they do: 3 programs and campaigns described on the official site · 2 operating locations identified
  • Where the money goes: 100% of revenue deployed · 88.1% of spending went to programs
  • Governance: 6 of 6 board members independent · 5 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $1.4M in reported program spending
  • Leadership: top reported pay $132K · 8 people listed
  • Consistency: 29 of 30 current checks pass · 1 finding to review
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 11 filing years from 2013 to 2024
  • Contacts: How to reach this organization
  • Money network: 7 filed money-flow records
  • Related organizations: 4 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.

  • Review — Transparency & Controls: Grant itemization coverage scored 50/100.
  • Review — Accountability: Governance controls: 4 of 9 not reported.
  • High — Sustainability: Operating margin scored 7/100.
  • High — Sustainability: Total-asset coverage ratio scored 29/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • High — Sustainability: Officer compensation ratio scored 24/100.
  • High — Sustainability: Liabilities to assets ratio scored 27/100.