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 · View filing
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
About National Tuberous Sclerosis
Based on IRS filings
National Tuberous Sclerosis is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in SILVER SPRING, MD. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $17.3M in total assets. In 2024, it awarded 9 grants totaling $594K. Net investment income was $53K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
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
Open Grants
7 open opportunities from National Tuberous Sclerosis
American Skin Association Research Grants
NATIONAL TUBEROUS SCLEROSIS
Amount
$15,000
Deadline
Rolling / Open
American Skin Association Research Scholar Award
NATIONAL TUBEROUS SCLEROSIS
Amount
$60,000
Deadline
Rolling / Open
Autism Science Foundation Pre- and Postdoctoral Training Awards and Medical Student Gap Year Research Training Awards
NATIONAL TUBEROUS SCLEROSIS
Amount
Varies
Deadline
December 1, 2026
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include National Organization for Rare Disorders ($175,000), Boston Children's Hospital ($81,869), Baylor College of Medicine ($75,000).
| Recipient | Purpose | Amount |
|---|---|---|
| BAYLOR COLLEGE OF MEDICINE DALLAS, TX | RESEARCH GRANT | $75,000 |
| EMORY UNIVERSITY ATLANTA, GA | RESEARCH GRANT | $18,750 |
| NORTHWESTERN UNIVERSITY EVANSTON, IL | RESEARCH GRANT | $18,750 |
| COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK NEW YORK, NY | RESEARCH GRANT | $56,250 |
| UNIVERSITY OF CALIFORNIA IRVINE IRVINE, CA | RESEARCH GRANT | $75,000 |
| UNIVERSITY OF MASSACHUSETTS WORCESTER, MA | RESEARCH GRANT | $18,750 |
| UNIVERSITY OF TEXAS DALLAS RICHARDSON, TX | RESEARCH GRANT | $75,000 |
| NATIONAL ORGANIZATION FOR RARE DISORDERS WOBURN, MA | TSC TRAVEL AND LODGING ASSISTANCE PROGRAM | $175,000 |
| BOSTON CHILDREN'S HOSPITAL BOSTON, MA | RESEARCH GRANT | $81,869 |
Leadership & 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 |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is National Tuberous Sclerosis?
National Tuberous Sclerosis is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in SILVER SPRING, MD. It holds $17.3M in total assets as of 2024.
How large is National Tuberous Sclerosis?
As of 2024, National Tuberous Sclerosis holds $17.3M in total assets with $10.0M in annual revenue. It awarded 9 grants totaling $594K in 2024.
Where does National Tuberous Sclerosis operate?
National Tuberous Sclerosis has awarded grants in Alabama, California, Connecticut, Georgia, Illinois, Massachusetts, Maryland, Maine, Michigan, New York, Ohio, Rhode Island, South Carolina, Tennessee, Texas, Virginia, Washington.
What size grants does National Tuberous Sclerosis award?
In 2024, National Tuberous Sclerosis awarded 9 grants totaling $594K — an average of about $66K per grant, based on its IRS Form 990 filings.
What is National Tuberous Sclerosis's EIN?
National Tuberous Sclerosis's EIN (Employer Identification Number) is 95-3018799. IRS Form 990 filing data is available on this page for 2020–2024.
Explore Open Grants
Browse active grant opportunities in National Tuberous Sclerosis's focus areas in our free grants database
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
What could you do with National Tuberous Sclerosis on Grantable?
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