California · Nonprofit
LGS Foundation Inc
LGS Foundation Inc (California) receives grants from 22 organizations whose IRS filings report $1,047,786 to it, the largest being Silicon Valley Community Foundation ($619,000). 11 of them have funded it in more than one year, and 95% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $1.2M
- Funders on record
- 22
- Grants received
- $1.0M
- Net assets
- $724k
What LGS Foundation Inc does
Mission
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.
As stated on its FY2024 Form 990.
Programs
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 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…
$642,921 spentof which $156,000 as grants$38,067 earned by the program47% of program spendingThe 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.…
$509,516 spent37% of program spendingResearch 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…
$226,738 spent16% of program spending
The 3 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $1,379,175.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2019 to 2020, from $623k to $1.4M (+124%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
92% of LGS Foundation Inc’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 4 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Tracy Dixon-Salazar PhD
Executive Director
Board chair
Fred Roedl
Chair
As listed on its FY2024 Form 990.
The chief executive listed changed between the FY2019 and FY2020 filings.
Who funds it, year by year
2017 → 2023: the base broadened from 2 funders to 7 funders, grant income rose $16k → $55k.
9 of 22 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 95% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of LGS Foundation Inc’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
LGS Foundation Inc leans on a few funders — its largest provides 59% of grant income and the top three 79%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
97% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund LGS Foundation Inc.
Largest funder’s share by year: 2017 97% · 2018 67% · 2019 55% · 2020 89% · 2021 48% · 2022 73% · 2023 27% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
13% of LGS Foundation Inc's funders are still giving 3 years after their first grant; 50% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
95% of LGS Foundation Inc's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $51k that is directly attributable, 100% of it comes from funders outside California, across 9 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $997k arriving through sponsors registered in 7 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
LGS Foundation Inc has grown faster than half of the 8,126 health nonprofits its size.
this organization peer median middle 50% of peers· 8,126 health nonprofits $1M–$10M, FY2024
Organizations like LGS Foundation Inc
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In California
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
88% of spending goes to programs.
Governance
Public support
99%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for LGS Foundation Inc: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds LGS Foundation Inc?
- LGS Foundation Inc (California) receives grants from 22 organizations whose IRS filings report $1,047,786 to it, the largest being Silicon Valley Community Foundation ($619,000). 11 of them have funded it in more than one year, and 95% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does LGS Foundation Inc have?
- IRS filings report 22 organizations giving $1,047,786 in grants to LGS Foundation Inc, 11 of which have funded it in more than one year.
- Who is the largest funder of LGS Foundation Inc?
- Silicon Valley Community Foundation is the largest funder on record, with $619,000 in grants. The full list of funders is on this page.
- How can an organization like LGS Foundation Inc find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in California. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 22 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing