Civic Intelligence

Lgs Foundation Inc

EIN 26-2051377 • 501(c)3 • San Diego, CA

Profile

The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.

6030 Santo Road STE 1 STE 420878San Diego, CA 92142

www.lgsfoundation.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

72nd percentile

0.26x

Higher debt load relative to assets than 72% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

67th percentile

0.21x

Higher debt load relative to revenue than 67% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

12th percentile

-25%

Higher net margin than 12% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

8th percentile

-22%

Faster asset growth than 8% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2022 to 2024

Revenue Growth

28th percentile

-4.3%

Faster revenue growth than 28% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2022 to 2024

Assets

Down

$984,047

Down $297,357 (-23%) from 2023

Liabilities

Up

$260,544

Up $16,886 (+6.9%) from 2023

Net Assets

Down

$723,503

Down $314,243 (-30%) from 2023

Revenue

Up

$1,248,197

Up $177,536 (+17%) from 2023

Expenses

Up

$1,565,600

Up $312,316 (+25%) from 2023

Net Income

Down

-$317,403

Down $134,780 (-74%) from 2023

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$2.0M$1.5M$1.0M$500K$0-$500KAssets 2010: $5,135Liabilities 2010: $6,301Net Assets 2010: -$1,1662010Assets 2011: $57,210Liabilities 2011: $905Net Assets 2011: $56,3052011Assets 2012: $54,939Liabilities 2012: $2,810Net Assets 2012: $52,1292012Assets 2013: $352,259Liabilities 2013: $245,000Net Assets 2013: $107,2592013Assets 2014: $286,678Liabilities 2014: $152,824Net Assets 2014: $133,8542014Assets 2015: $325,521Liabilities 2015: $156,961Net Assets 2015: $168,5602015Assets 2016: $504,025Liabilities 2016: $305,609Net Assets 2016: $198,4162016Assets 2017: $401,865Liabilities 2017: $256,311Net Assets 2017: $145,5542017Assets 2018: $620,048Liabilities 2018: $331,654Net Assets 2018: $288,3942018Assets 2019: $623,167Liabilities 2019: $236,308Net Assets 2019: $386,8592019Assets 2020: $1,393,791Liabilities 2020: $224,216Net Assets 2020: $1,169,5752020Assets 2021: $1,489,428Liabilities 2021: $257,400Net Assets 2021: $1,232,0282021Assets 2022: $1,598,197Liabilities 2022: $382,191Net Assets 2022: $1,216,0062022Assets 2023: $1,281,404Liabilities 2023: $243,658Net Assets 2023: $1,037,7462023Assets 2024: $984,047Liabilities 2024: $260,544Net Assets 2024: $723,5032024

Highlighted filing

2024

Assets$984,047
Liabilities$260,544
Net Assets$723,503

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$2.0M$1.5M$1.0M$500K$0-$500KRevenue 2010: $59,167Expenses 2010: $60,333Net Income 2010: -$1,1662010Revenue 2011: $138,217Expenses 2011: $94,208Net Income 2011: $44,0092011Revenue 2012: $89,368Expenses 2012: $93,544Net Income 2012: -$4,1762012Revenue 2013: $245,752Expenses 2013: $156,521Net Income 2013: $89,2312013Revenue 2014: $292,077Expenses 2014: $265,482Net Income 2014: $26,5952014Revenue 2015: $214,368Expenses 2015: $179,662Net Income 2015: $34,7062015Revenue 2016: $336,556Expenses 2016: $306,700Net Income 2016: $29,8562016Revenue 2017: $426,999Expenses 2017: $479,861Net Income 2017: -$52,8622017Revenue 2018: $424,900Expenses 2018: $282,060Net Income 2018: $142,8402018Revenue 2019: $774,334Expenses 2019: $663,108Net Income 2019: $111,2262019Revenue 2020: $1,165,055Expenses 2020: $382,339Net Income 2020: $782,7162020Revenue 2021: $785,563Expenses 2021: $723,112Net Income 2021: $62,4512021Revenue 2022: $1,363,205Expenses 2022: $1,379,227Net Income 2022: -$16,0222022Revenue 2023: $1,070,661Expenses 2023: $1,253,284Net Income 2023: -$182,6232023Revenue 2024: $1,248,197Expenses 2024: $1,565,600Net Income 2024: -$317,4032024

Highlighted filing

2024

Revenue$1,248,197
Expenses$1,565,600
Net Income-$317,403

Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$0.98$0.26$0.72$1.25$1.57$0.32
2023Detailed filing. Detailed filing data is available for this year.$1.28$0.24$1.04$1.07$1.25$0.18
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.60$0.38$1.22$1.36$1.38$0.02
2021Detailed filing. Detailed filing data is available for this year.$1.49$0.26$1.23$0.79$0.72$0.06
2020Detailed filing. Detailed filing data is available for this year.$1.39$0.22$1.17$1.17$0.38$0.78
2019Detailed filing. Detailed filing data is available for this year.$0.62$0.24$0.39$0.77$0.66$0.11
2018Detailed filing. Detailed filing data is available for this year.$0.62$0.33$0.29$0.42$0.28$0.14
2017Detailed filing. Detailed filing data is available for this year.$0.40$0.26$0.15$0.43$0.48$0.05
2016Detailed filing. Detailed filing data is available for this year.$0.50$0.31$0.20$0.34$0.31$0.03
2015Detailed filing. Detailed filing data is available for this year.$0.33$0.16$0.17$0.21$0.18$0.03
2014Detailed filing. Detailed filing data is available for this year.$0.29$0.15$0.13$0.29$0.27$0.03
2013Detailed filing. Detailed filing data is available for this year.$0.35$0.25$0.11$0.25$0.16$0.09
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.05$0.00$0.05$0.09$0.09$0.00
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.06$0.00$0.06$0.14$0.09$0.04
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.01$0.01$0.00$0.06$0.06$0.00
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 10, 2025
Return Version
2024v5.2
Gross Receipts
$1,248,197
Mission and Program Overview

Mission

The lgs foundation is dedicated to improving the lives of individuals living with lennox-gastaut syndrome, a rare and catastrophic form of epilepsy, through research, programs and education.

The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$524,425$660,438▲ $136,013
Cash and Non-Interest-Bearing Accounts$427,066$130,483▼ $296,583
Accounts Receivable$57,180$81,222▲ $24,042
Prepaid Expenses and Deferred Charges$8,344$59,536▲ $51,192
Savings and Temporary Cash Investments$254,849$52,368▼ $202,481
Land, Buildings, and Equipment, Net$9,540--
Total Assets$1,281,404$984,047▼ $297,357
Liabilities
Grants Payable$67,490$139,990▲ $72,500
Deferred Revenue$155,000$115,500▼ $39,500
Accounts Payable and Accrued Expenses$21,168$5,054▼ $16,114
Total Liabilities$243,658$260,544▲ $16,886
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$976,671$642,281▼ $334,390
Net Assets With Donor Restrictions$61,075$81,222▲ $20,147
Total Net Assets Fund Balance$1,037,746$723,503▼ $314,243
Total Liabilities and Net Assets / Fund Balance$1,281,404$984,047▼ $297,357

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings-$38,159$38,159
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseTotal
Tracy Dixon-Salazar PhDExecutive DirectorFT$132,498$132,498
Amber MathasSr Director of OperationsFT$94,661$94,661

Board Members and Trustees

NameTitle
Fred RoedlChair
Deena AndreolaBoard Member
Jacqueline VillatoroBoard Member
Kat Belendiuk PhDBoard Member
Dale ToddSecretary
Kevin Merritt CFATreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,142,243
Program Service Revenue
$73,814
Investment Income
$28,637
Other Revenue
$3,503
All Other Contributions
$1,142,243
Change in Net Assets
$-317,403

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,248,197
Revenue Not Reported on Form 990
$3,160
Total Revenue per Audited Statements
$1,251,357
Total Revenue per Form 990
$1,248,197
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$721,619
Salaries, Compensation, and Employee Benefits$687,981
Grants and Similar Amounts Paid$156,000
Total Fundraising Expense$53,165
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$332,456$39,260$17,761$389,477
Conferences and Meetings$234,016$123$18,074$252,213
Current Officers, Directors, Trustees, and Key Employees$193,902$22,898$10,359$227,159
Travel$170,312--$170,312
Grants to Domestic Orgs$156,000--$156,000
Fees for Services Other$130,672$8,780-$139,452
Payroll Taxes$43,000$5,070$2,310$50,380
Information Technology$46,450$1,469$448$48,367
Fees for Services Accounting-$37,370-$37,370
Advertising$32,656--$32,656
Office Expenses$15,282$9,468$4,109$28,859
Other Employee Benefits$14,889$5,972$104$20,965
Depreciation Depletion$9,540--$9,540
Fees for Services Legal-$2,190-$2,190
Occupancy-$660-$660
Total Functional Expenses$1,379,175$133,260$53,165$1,565,600

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$1,565,600
Total Expenses per Audited Statements$1,565,600
Total Expenses per Form 990$1,565,600
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Stanford UniversityLos Angeles, CA501c3Grant$37,500
Mayo ClinicRochester, MN501c3Grant$30,000
Danny Did FoundationEvanston, IL501c3Grant$5,000
Northwestern UniversityChicago, IL501c3Grant$5,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
No
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
Yes

Governance Explanations

Management duties delegation Part VI line 3

Contractors are hired to perform research consulting to L.G.S. Foundation in order to help provide additional research and resources for explanation in relation to Lennox-Gastaut Syndrome.

Form 990 governing body review Part VI line 11

A copy of form 990 and all related schedules is provided to the executive committee of the board of directors and the full board of directors for review prior to filing with the Internal Revenue Service.

Conflict of interest policy compliance Part VI line 12C

A conflict of interest disclosures statement is distributed and signed by each board member annually. Conflicts are dealt with on a case-by-case basis.

Governing documents etc available to public Part VI line 19

LGSF makes its governing documents and conflict of interest policy available to the public upon prior written request from the president. Financial statements are available for public view on the organizations website.

Filing and Contact Details

Filer

Filer Name
LGS Foundation Inc
EIN
26-2051377
In Care Of
% Tracy Dixon-Salazar PhD
Phone
7183743800
Address
6030 Santo Road STE 1 STE 420878, San Diego, CA 92142
Doing Business As
Lennox-Gastaut Syndrome LGS Fd

Signing Officer

Name
Tracy Dixon-salazar Phd
Title
Executive Director
Phone
7183743800
Signed
2025-11-10
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Tracy Dixon-Salazar PhD
Formed
2008
Legal Domicile
Ny
Voting Board Members
6
Independent Board Members
6
Employees
11
Volunteers
200

Preparer

Firm
Mullins PC
Address
7625 Wisconsin Avenue, Bethesda, MD 20814
Preparer
John Mullins
Phone
2027706371
Supplemental Narrative

Additional Explanations

Audited by an independent accountant Part XII line 2B

The finance committee is responsible for overseeing the audit.

List of other fees for services expenses Part IX line 11G

Contracted Services: $130,672Payroll Fees: $8,780

Financial Statement Notes

Part XI, Line 2D-Other revenue included on Sch D but not on 990

Event Expenses

Part XII, Line 2D-Other expenses included on Sch D but not on 990

Event Expenses

Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740)

The Foundation is exempt from federal income taxes under section 501(c)(3) of the Internal Revenue code. The accounting standard on accounting for uncertainity in income taxes addresses the determination of whether tax benefits claimed or expected to be claimed on a tax return should be recorde in the financial statements. Under that guidance, the Foundation may recognize the tax benefit from an uncertain tax position only if it is more likely than not that the tax position will be sustained on examination by taxing authorities based on the techincal mertis of the position. Examples of tax positions include the tax exempt status of the Foundation and various positions related to the potential sources of unrelated business taxable income (UBIT). The tax benefits recognized in the financial Statements from such a position are measured based on the largest benefit that has a greater than 50% likelihood of being realized upon ultimate settlement. There were no unrecognized tax benefits identified or recorded as liabilties for at December 31, 2024. The Foundations policy would be to recognize interest and penalties, if any, on tax positions related to its unrecognized tax benefits in income tax expense in the financial statements. No interest and penalties were assessed or recorded during 2024. Generally, the Foundation is no longer subject to U.S. Federal or State examinations for returns filed prior to the previous three years.

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IRS990/Desc0LGS Family Support, Education, and Empowerment Programs: Receiving a diagnosis of LGS is overwhelming and leaves families with many unanswered questions. The LGS Foundation provides comprehensive support and educational programs to over 12,000 members impacted by LGS, offering direct assistance through individual consultations, resource navigation, and financial aid for medical expenses not covered by insurance. In 2024, our private, online caregiver community reached 7,500 members, with 51 ambassadors in 8 countries who help local families navigate the LGS journey. In 2024, 653 new families were onboarded to our support community and 34 online support groups were hosted, including groups for Spanish-speaking families, Dads, and Caregivers of Adults living with LGS. 461 New Family Welcome Kits, 224 About LGS Treatment Kits, 246 Sibling Support Kits, and 494 Adult Care Binders were mailed to help families navigate the different stages of their LGS journeys. The LGS Foundation also supported approximately 140 bereaved families who have lost their loved ones to LGS. Further, we have funded over $120,000 in patient assistance grants since our inception. The LGS Foundations family support and education efforts continue to grow as we focus on supporting families locally and globally.
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IRS990/MissionDesc0The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.
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IRS990/ProgSrvcAccomActy2Grp/Desc0The 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.
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IRS990/ProgSrvcAccomActy3Grp/Desc0Research Grants and Funded Initiatives: To date, the LGS Foundation has hosted 12 international LGS research convenings and awarded over $2 million in competitive research grants supporting 18 high-impact projects focused on understanding disease mechanisms, improving treatments, and advancing toward cures for LGS. These convenings and grants have contributed to significant scientific progress, including studies on novel therapeutic approaches and clinical trial endpoints. The Foundations research portfolio supported 2 new funded studies in 2024, one on moving us towards preventing LGS by identifying early risk factors and one on formulating an international consensus for the diagnosis and management of LGS. Findings from convenings and grants are published in peer-reviewed journals and presented at major scientific conferences. The LGS Foundation also supports the LGS Learn from Every Patient Database, a natural history registry that includes electronic health records and real-world data from caregivers living with LGS. Research efforts have ramped up to increase this dramatically over the next 5 years. Research areas include death in LGS, SUDEP, understanding where the electrographic features of LGS originate in the brain, drug discovery, targeted treatments, genetics, epidemiology, and neural networks. The Foundations commitment to research has helped accelerate research on LGS, which would not otherwise be undertaken. These accomplishments reflect the Foundations dedication to improving the lives of individuals with LGS and their families through robust support, education, and research initiatives.
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IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt2The Foundation is exempt from federal income taxes under section 501(c)(3) of the Internal Revenue code. The accounting standard on accounting for uncertainity in income taxes addresses the determination of whether tax benefits claimed or expected to be claimed on a tax return should be recorde in the financial statements. Under that guidance, the Foundation may recognize the tax benefit from an uncertain tax position only if it is more likely than not that the tax position will be sustained on examination by taxing authorities based on the techincal mertis of the position. Examples of tax positions include the tax exempt status of the Foundation and various positions related to the potential sources of unrelated business taxable income (UBIT). The tax benefits recognized in the financial Statements from such a position are measured based on the largest benefit that has a greater than 50% likelihood of being realized upon ultimate settlement. There were no unrecognized tax benefits identified or recorded as liabilties for at December 31, 2024. The Foundations policy would be to recognize interest and penalties, if any, on tax positions related to its unrecognized tax benefits in income tax expense in the financial statements. No interest and penalties were assessed or recorded during 2024. Generally, the Foundation is no longer subject to U.S. Federal or State examinations for returns filed prior to the previous three years.
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