National Tuberous Sclerosis
TO IMPROVE QUALITY OF LIFE FOR EVERYONE AFFECTED BY TUBEROUS SCLEROSIS COMPLEX BY CATALYZING NEW TREATMENTS, DRIVING RESEARCH TOWARD A CURE AND EXPANDING ACCESS TO LIFELONG SUPPORT.
Financial Overview
From 2024 IRS Form 990-PF
Total Assets
$17.3M
+7.3% YoY
Annual Giving
$594K
-6.1% YoY
Grant Count
9
-30.8% YoY
Avg Grant Size
$66K
+35.7% YoY
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Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $17,254,701 | $16,085,768 | $14,827,937 |
| Revenue | $10,000,895 | $10,016,383 | $8,909,542 |
| Expenses | $8,660,018 | $8,467,648 | $8,063,684 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $52,809 | $36,732 | $2,636 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 9 recipients in 2024
Grant Size Distribution
59 grants across all recorded years
Giving History
Grant recipients and amounts by year
No grants recorded for .
Who else does National Tuberous Sclerosis fund?
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Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| WILLIAM JOSEPH | BOARD CHAIR | 5 | — |
| PAUL WAXLAX | VICE CHAIR | 5 | — |
| BRITTANY SMITH | TREASURER | 5 | — |
| LESLEY HOLMES | SECRETARY | 5 | — |
| DEREK BAUER | DIRECTOR | 2 | — |
| FRANCES BRIONES | DIRECTOR | 2 | — |
| JULIE BLUM | DIRECTOR | 2 | — |
| MATT BOLGER | DIRECTOR | 2 | — |
| CHIP BURKHALTER | DIRECTOR | 2 | — |
| LISA CARLTON | DIRECTOR | 2 | — |
| MARK CARROLL | DIRECTOR | 2 | — |
| JULIAN GANGOLLI | DIRECTOR | 2 | — |
| TANJALA GIPSON | DIRECTOR | 2 | — |
| JONATHAN GOLDSTEIN | DIRECTOR | 2 | — |
| STEVEN GOLDSTEIN | DIRECTOR | 2 | — |
| SHAFALI JESTE | DIRECTOR | 2 | — |
| JESSICA KREFTING | DIRECTOR | 2 | — |
| DARCY KRUEGER | DIRECTOR | 2 | — |
| PATROSKI LAWSON | DIRECTOR | 2 | — |
| KRISTI LENGYEL | DIRECTOR | 2 | — |
| HEATHER LENS | DIRECTOR | 2 | — |
| LAURA MARKS | DIRECTOR | 2 | — |
| MUSTAFA SAHIN | DIRECTOR | 2 | — |
| SEAN SHILLINGER | DIRECTOR | 2 | — |
| ANDREW SPERLING | DIRECTOR | 2 | — |
| MARK SPOTTS | DIRECTOR | 2 | — |
| VANESSA VAZQUEZ | DIRECTOR | 2 | — |
| KARI LUTHER ROSBECK | PRESIDENT & CEO | 54 | $229,751 |
| CYNTHIA ARCURI | CHIEF FINANCIAL OFFICER | 45 | $184,176 |
| STEVEN ROBERDS | CHIEF SCIENTIFIC OFFICER | 45 | $243,817 |
| DEAN RAGER-AGUIAR | VICE PRESIDENT, TRANSLATIO | 45 | $183,132 |
| LISA MOSS | VICE PRESIDENT, DONOR RELA | 45 | $129,161 |
| JAYE ISHAM | CHIEF OUTREACH OFFICER | 45 | $154,028 |
Geographic Focus
Where this funder has awarded grants
Grant Distribution by State
States
Cities
Data last updated March 2026. Sourced from IRS Form 990-PF filings.
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