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Organizations Diseases, Disorders & Medical National Tuberous Sclerosis Association

National Tuberous Sclerosis Association

Fiscal year ending 2024. Filed on April 11, 2025.

8737 Colesville Road 400
Code 8725
Silver Spring, Maryland 20910

National Tuberous Sclerosis Association (EIN: 95-3018799), also known as Tsc Alliance, has filed an IRS Form 990 between fiscal years 2016 and 2024. In its fiscal year 2024 IRS Form 990 filing, National Tuberous Sclerosis Association, a 501(c)(3) charitable organization, reported compensation for 6 out of 26 total employees. Among the employees shown here, the average compensation is $211,101. The highest compensated employee at National Tuberous Sclerosis Association is Steven Roberds with fiscal year 2024 compensation of $272,694.

Revenue, expenses, and employee compensation

Revenue

$10,000,895

Expenses

$8,660,018

Employee compensation

$3,153,884
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Steven Roberds
Chief Scientific Officer
$272,694
$243,817 No related comp$28,877
Kari Luther Rosbeck
President and Chief Executive Officer
$261,894
$229,751 $2,321 $29,822
Dean Rager-Aguiar
Vice President Translatio
$214,250
$183,132 No related comp$31,118
Cynthia Arcuri
Chief Financial Officer
$201,902
$184,176 $9,693 $8,033
Jaye Isham
Chief Outreach Officer
$159,958
$154,028 No related comp$5,930
Lisa Moss
Vice President Donor RELA
$155,908
$129,161 No related comp$26,747

Benchmark Employee Compensation

Non-Employee Board Members

Andrew Sperling
Director
Brittany Smith
Treasurer
Chip Burkhalter
Director
Darcy Krueger
Director
Derek Bauer
Director
Frances Briones
Director
Heather Lens
Director
Jessica Krefting
Director
Jonathan Goldstein
Director
Julian Gangolli
Director
Julie Blum
Director
Kristi Lengyel
Director

Contractors

Psychogenics Inc.
Research Lab
$2,196,755
Van Andel Research Institute
Research Lab
$275,408
Cavarocchi Ruscio Dennis Associates LLC
Government Relations
$121,737

Mission Statement

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.

Revisions to this organization profile

April 11, 2025:
2024 National Tuberous Sclerosis Association 990 filed
September 24, 2024:
Amended (originally filed April 17, 2024)2023 National Tuberous Sclerosis Association 990 filed
September 24, 2024:
Amended (originally filed April 14, 2023)2022 National Tuberous Sclerosis Association 990 filed

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