Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Aug 2008.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
88 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
8 people listed on the 990; $227K paid to officers and key staff.
Tracy Dixon-Salazar PHD’s $132K as Executive Director is at the 44th percentile of top reported officer pay among 733 $1–10M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 2 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|
| Tracy Dixon-Salazar PHD | $132,498 | $133,025 | $129,150 | $88,000 |
| Amber Mathas | $94,661 | — | — | — |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aNo
Programs and updates
Advance research, awareness, education, and family support for those impacted by LGS.
Questions for Lgs Foundation INC
Your first name shows with your question. Lgs Foundation INC answers here, for everyone.
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Lgs 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…
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.
Research 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.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $682K | $183K |
| InvestmentsLn 11–13 | $524K | $660K |
| Total assetsLn 16 | $1.3M | $984K |
| LiabilitiesLn 26 | $244K | $261K |
| Net assetsLn 32 | $1.0M | $724K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $156K | $156K | ||
| Pay of current officers, directors and key staffLn 5 | $227K | $194K | $23K | $10K |
| Other salaries and wagesLn 7 | $389K | $332K | $39K | $18K |
| Other employee benefitsLn 9 | $21K | $15K | $6K | $104 |
| Payroll taxesLn 10 | $50K | $43K | $5K | $2K |
| Legal feesLn 11b | $2K | $2K | ||
| Accounting feesLn 11c | $37K | $37K | ||
| Other fees for servicesLn 11g | $139K | $131K | $9K | |
| Advertising and promotionLn 12 | $33K | $33K | ||
| Office expensesLn 13 | $29K | $15K | $9K | $4K |
| Information technologyLn 14 | $48K | $46K | $1K | $448 |
| OccupancyLn 16 | $660 | $660 | ||
| TravelLn 17 | $170K | $170K | ||
| Conferences, conventions and meetingsLn 19 | $252K | $234K | $123 | $18K |
| Depreciation, depletion and amortizationLn 22 | $10K | $10K | ||
| Total functional expensesLn 25 | $1.6M | $1.4M | $133K | $53K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $1.2M | $1.6M | −$317K | $724K | 990 PDF |
| FY2023 | $1.1M | $1.3M | −$183K | $1.0M | 990 PDF |
| FY2022 | $1.4M | $1.4M | −$16K | $1.2M | 990 PDF |
| FY2021 | $786K | $723K | $62K | $1.2M | 990 PDF |
| FY2020 | $1.2M | $382K | $783K | $1.2M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $1,248,197 revenue, 12 lines filed
Part VI · Governance 6 of 6 board members independent, 3 to look at
Part VIII · Statement of revenue $1,248,197 across 7 lines filed
Part IX · Statement of functional expenses $1,565,600 across 15 lines filed
Part X · Balance sheet $984,047 assets, 14 lines filed
Part XI · Reconciliation of net assets $723,503 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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