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Organizations Diseases, Disorders & Medical National Tuberous Sclerosis Association

National Tuberous Sclerosis Association

Fiscal year ending 2022. 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 2022 IRS Form 990 filing, National Tuberous Sclerosis Association, a 501(c)(3) charitable organization, reported compensation for 9 out of 27 total employees. Among the employees shown here, the average compensation is $167,897. The highest compensated employee at National Tuberous Sclerosis Association is Steven Roberds with fiscal year 2022 compensation of $259,515.

Revenue, expenses, and employee compensation

Revenue

$8,909,542

Expenses

$8,063,684

Employee compensation

$2,896,346
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Steven Roberds
Chief Scientific Officer
$259,515
$233,206 No related comp$26,309
Kari Luther Rosbeck
President and Chief Executive Officer
$249,382
$217,716 $2,756 $28,910
Dean Rager-Aguiar
Vice President Translational Research
$191,475
$164,261 No related comp$27,214
Cynthia Arcuri
Chief Financial Officer
$167,857
$146,692 $11,324 $9,841
Lisa Moss
Vice President Donor Relations
$146,062
$122,204 No related comp$23,858
April Cooper
Vice President Community Programs
$139,668
$114,370 No related comp$25,298
Jaye Isham
Senior Vice President, Strategic Communications
$138,004
$133,868 No related comp$4,136
Ashley Pounders
Director of Medical Affairs
$125,495
$111,519 No related comp$13,976
Richard Gollub
Chief Financial Officer
$93,619
$80,583 $4,241 $8,795

Benchmark Employee Compensation

Non-Employee Board Members

Brittany Smith
Board Member
Dana Holinka
Board Member
Darcy Krueger
Board Member
David Coit
Board Member
Derek Bauer
Board Member
Diane McSwain
Board Member
Edward Burkhalter
Board Member
Heather Lens
Board Member
Jessica Krefting
Secretary
Julian Gangolli
Board Member
Julie Blum
Board Member
Kristi Lengyel
Board Member

Contractors

Psychogenics Inc.
Research Lab
$1,194,468
Mms Holdings Inc.
Research Lab
$121,387
Cavarocchi Ruscio Dennis Associates
Government Relations
$116,364
Geben Communications
Marking Consulting
$102,875

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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