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Organizations Medical Research The Association for Frontotemporal Degeneration

The Association for Frontotemporal Degeneration

Fiscal year ending 2022. Filed on December 19, 2022.

2700 Horizon Drive 120
Research Building
King OF Prussia, Pennsylvania 19406

The Association for Frontotemporal Degeneration (EIN: 41-2073220) has filed an IRS Form 990 since fiscal year 2017. In its fiscal year 2022 IRS Form 990 filing, The Association for Frontotemporal Degeneration, a 501(c)(3) charitable organization, reported compensation for 8 out of 35 total employees. Among the employees shown here, the average compensation is $176,348. The highest compensated employee at The Association for Frontotemporal Degeneration is Susan L-J Dickinson with fiscal year 2022 compensation of $250,814.

Revenue, expenses, and employee compensation

Revenue

$12,057,958

Expenses

$8,575,867

Employee compensation

$3,481,118
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Susan L-J Dickinson
Chief Executive Officer
$250,814
$226,222 No related comp$24,592
Penny Dacks
SR Director of Scientific Initiatives
$212,309
$197,475 No related comp$14,834
Christine Rogers Stevens
Chief Financial Officer
$210,505
$184,890 No related comp$25,615
Benjamin Freeman
Director of Development and Communications
$159,844
$154,091 No related comp$5,753
Sharon Denny
SR Director of Programs
$149,731
$144,277 No related comp$5,454
Debra Niehoff
Director of Research and Grants
$127,997
$104,868 No related comp$23,129
Esther Kane
Director of Support and Education
$123,239
$110,445 No related comp$12,794
Mitch Appleson
Chief Operating Officer
$0

Benchmark Employee Compensation

Non-Employee Board Members

Brian Rose
Treasurer
Christian Barrow
Director
Daniel Hedaya
Director
David Pfeifer
Chair
Donald E Newhouse
Director
Gail Anderson
Director
Halima Amjad
Director
Helen-Ann Comstock
Director
Jary Larsen, Ph.D.
Director
Joseph Marquez, M.D.
Director
Kacy Kunesh
Secretary
Kathy Mele
Director

Mission Statement

PROMOTE AND FUND RESEARCH INTO DEVELOPING BETTER DIAGNOSTIC PROCESSES, THERAPIES, AND CURES FOR FRONTOTEMPORAL DEGENERATION (FTD); PROVIDE INFORMATION, EDUCATION, SUPPORT AND ADVOCACY TO PERSONS DIAGNOSED WITH FTD, THEIR FAMILIES AND CAREGIVERS; (CONTINUED IN SCH O) EDUCATE PHYSICIANS AND OTHER HEALTH PROFESSIONALS ABOUT FTD AND HOW TO IMPROVE PATIENT CARE; BRING ABOUT GREATER PUBLIC AWARENESS OF THE NATURE AND PREVALENCE OF FRONTOTEMPORAL DEGENERATION AND THE NEEDS OF THOSE WHO ARE COPING WITH IT; ADVOCATE WITH PUBLIC OFFICIALS TO PROMOTE PUBLIC AND PRIVATE PROGRAMS THAT PROVIDE APPROPRIATE, AFFORDABLE AND HIGH-QUALITY, LONG-TERM HEALTH CARE AND SOCIAL SERVICES.

Revisions to this organization profile

October 16, 2025:
2025 The Association for Frontotemporal Degeneration 990 filed
November 13, 2024:
2024 The Association for Frontotemporal Degeneration 990 filed
November 8, 2023:
2023 The Association for Frontotemporal Degeneration 990 filed

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