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Organizations Diseases, Disorders & Medical National Tuberous Sclerosis Association

National Tuberous Sclerosis Association

Fiscal year ending 2023. Filed on September 24, 2024.

8737 Collesville 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 2023 IRS Form 990 filing, National Tuberous Sclerosis Association, a 501(c)(3) charitable organization, reported compensation for 7 out of 26 total employees. Among the employees shown here, the average compensation is $191,564. The highest compensated employee at National Tuberous Sclerosis Association is Steven Roberds with fiscal year 2023 compensation of $263,771.

Revenue, expenses, and employee compensation

Revenue

$10,016,383

Expenses

$8,467,648

Employee compensation

$3,024,376
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Steven Roberds
Chief Scientific Officer
$263,771
$237,208 No related comp$26,563
Kari Luther Rosbeck
President and Chief Executive Officer
$255,423
$223,746 $2,260 $29,417
Dean Rager-Aguiar
Vice President Translational Research
$205,816
$177,725 No related comp$28,091
Cynthia Arcuri
Chief Financial Officer
$195,786
$176,989 $9,315 $9,482
Lisa Moss
Vice President Donor Relations
$149,058
$124,914 No related comp$24,144
Jaye Isham
Chief Outreach Officer
$142,644
$137,218 No related comp$5,426
Ashley Pounders
Director of Medical Affairs
$128,448
$115,372 No related comp$13,076

Benchmark Employee Compensation

Non-Employee Board Members

Brittany Smith
Treasurer
Chip Burkhalter
Board Member
Dana Holinka
Board Member
Darcy Krueger
Board Member
David Coit
Board Member
Derek Bauer
Board Member
Diane McSwain
Board Member
Heather Lens
Board Member
Jessica Krefting
Board Member
Jonathan Goldstein
Board Member
Julian Gangolli
Board Member
Julie Blum
Board Member

Contractors

Psychogenics Inc.
Research Lab
$1,565,754
Van Andel Research Institute
Research Lab
$493,453
Cavarocchi Ruscio Dennis Associates LLC
Government Relations
$117,714

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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