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PROMOTE AND FUND RESEARCH INTO DEVELOPING BETTER DIAGNOSTIC PROCESSES, THERAPIES (CONT'D IN SCH O)AND CURES FOR FRONTOTEMPORAL DEGENERATION (FTD); PROVIDE INFORMATION, EDUCATION, SUPPORT AND ADVOCACY TO PERSONS DIAGNOSED WITH FTD, THEIR FAMILIES AND CAREGIVERS; 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.
Source: IRS Form 990 (Tax Year 2025)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$14.4M
Program Spending
82%
of total expenses go to program services
Total Contributions
$12.3M
Total Expenses
▼$11.6M
Total Assets
$60.1M
Total Liabilities
▼$3.2M
Net Assets
$56.9M
Officer Compensation
→$651.5K
Other Salaries
$4.6M
Investment Income
$1.9M
Fundraising
▼$159.7K
Tax Year 2024 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $1.5M
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
ALZHEIMER'S DRUG DISCOVERY FOUNDATION20-1082179 | NEW YORK, NY | $700K | Cash | ADDF/AFTD DRUG DISCOVERY PROGRAM AND TREAT TREATFTD THERAPEUTIC INITIATIVE |
THE FTD DISORDERS REGISTRY47-3601782 | KING OF PRUSSIA, PA | $287.4K | Cash | FTD PATIENT REGISTRY |
WASHINGTON UNIVERSITY IN ST LOUIS43-0653611 | ST LOUIS, MO | $230K | Cash | PATHWAYS FOR HOPE PILOT GRANT |
STANFORD UNIVERSITY94-1156365 | STANFORD, CA | $120K | Cash | HOLLOWAY POSTDOCTORAL FELLOWSHIP |
UNIVERSITY OF TEXAS AT AUSTIN74-6000603 | AUSTIN, TX | $110K | Cash | WELL-BEING IN FTD PILOT GRANT |
AMERICAN BRAIN FOUNDATION41-1717098 | MINNEAPOLIS, MN | $100K | Cash | CLINICAL RESEARCH SCHOLARSHIPS |
| Total | $1.5M | |||
NEW YORK, NY
$700K
KING OF PRUSSIA, PA
$287.4K
ST LOUIS, MO
$230K
STANFORD UNIVERSITY
STANFORD, CA
$120K
UNIVERSITY OF TEXAS AT AUSTIN
AUSTIN, TX
$110K
MINNEAPOLIS, MN
$100K
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2024 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2024IRS e-File | $14.4M | $12.3M | $11.6M | $60.1M | $56.9M |
| 2023IRS e-File | $13.1M | $12.4M | $11.5M | $54M | $50.6M |
| 2022 | $12.1M | $12.1M | $8.6M | $44.8M | $42.6M |
| 2021 | $28.5M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
Financial data: IRS e-Filed Form 990 (Tax Year 2024)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Susan L-J Dickinson | Chief Executive Officer | 36 | $320K | $0 | $30K | $350K |
| Mitch Appleson | Chief Operating Officer | 38 | $255K | $0 | $28.6K | $283.6K |
| Rita Choula | Chair | 4 | $0 | $0 | $0 | $0 |
| Gail Anderson | Vice Chair | 4 | $0 | $0 | $0 | $0 |
| Valerie Snow | Secretary | 4 | $0 | $0 | $0 | $0 |
| Julie Kelly | Treasurer | 4 | $0 | $0 | $0 | $0 |
Susan L-J Dickinson
Chief Executive Officer
$350K
Hrs/Wk
36
Compensation
$320K
Related Orgs
$0
Other
$30K
Mitch Appleson
Chief Operating Officer
$283.6K
Hrs/Wk
38
Compensation
$255K
Related Orgs
$0
Other
$28.6K
Rita Choula
Chair
$0
Hrs/Wk
4
Compensation
$0
Related Orgs
$0
Other
$0
Gail Anderson
Vice Chair
$0
Hrs/Wk
4
Compensation
$0
Related Orgs
$0
Other
$0
Valerie Snow
Secretary
$0
Hrs/Wk
4
Compensation
$0
Related Orgs
$0
Other
$0
Julie Kelly
Treasurer
$0
Hrs/Wk
4
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Penny Dacks | Sr Director Of Scientific Initiatives | 30 | $226.5K | $0 | $17.6K | $244.1K |
| Sharon Denny | Sr Director Of Programs | 40 | $174.2K | $0 | $26.1K | $200.3K |
| Phillip John Weichel | Sr Director Of Advancement | 40 | $157.9K |
Penny Dacks
Sr Director Of Scientific Initiatives
$244.1K
Hrs/Wk
30
Compensation
$226.5K
Related Orgs
$0
Other
$17.6K
Sharon Denny
Sr Director Of Programs
$200.3K
Hrs/Wk
40
Compensation
$174.2K
Related Orgs
$0
Other
$26.1K
Phillip John Weichel
Sr Director Of Advancement
$200.2K
Hrs/Wk
40
Compensation
$157.9K
Related Orgs
$0
Other
$42.3K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Abrar Tanveer | Director | 2 | $0 | $0 | $0 | $0 |
| David Pfeifer | Director (eff 5/3/25) | 3 | $0 | $0 | $0 | $0 |
| Don Newhouse | Director | 2 | $0 | $0 | $0 | $0 |
| Girish Patangay | Director (eff 5/3/25) | 3 | $0 | $0 | $0 | $0 |
| Halima Amjad | Director | 3 | $0 | $0 | $0 | $0 |
| Helen-Ann Comstock | Director |
Abrar Tanveer
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
David Pfeifer
Director (eff 5/3/25)
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Don Newhouse
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
| $28.1M |
| $7.6M |
| $44.8M |
| $42.9M |
| 2020 | $9.5M | $9.3M | $7.7M | $23.9M | $20.9M |
| 2019 | $9.1M | $8.9M | $7M | $21.2M | $19.1M |
| 2018 | $14.8M | $14.6M | $4.6M | $17.5M | $16.8M |
| 2017 | $4.3M | $4.2M | $5.7M | $8.3M | $7M |
| 2016 | $8.2M | $8.1M | $2.7M | $8.8M | $8.3M |
| 2015 | $2.2M | $2.2M | $2M | $3M | $2.7M |
| 2014 | $2.7M | $2.7M | $1.4M | $2.5M | $2.5M |
| 2013 | $1.2M | $1.2M | $1.2M | $1.2M | $1.2M |
| 2012 | $460K | $454.2K | $478.8K | $1.2M | $1.1M |
| 2011 | $1M | $1M | $959.9K | $1.2M | $1.1M |
| 2022 | 990 | Data |
| 2021 | 990 | Data |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data | PDF not yet published by IRS |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990-EZ | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| $0 |
| $42.3K |
| $200.2K |
| Peter Witzleb | Director Of It | 40 | $168.9K | $0 | $6,033 | $174.9K |
| Shana Dodge | Director Of Research Engagement | 40 | $152.9K | $0 | $15K | $167.9K |
Peter Witzleb
Director Of It
$174.9K
Hrs/Wk
40
Compensation
$168.9K
Related Orgs
$0
Other
$6,033
Shana Dodge
Director Of Research Engagement
$167.9K
Hrs/Wk
40
Compensation
$152.9K
Related Orgs
$0
Other
$15K
| 3 |
| $0 |
| $0 |
| $0 |
| $0 |
| Jary Larsen | Director (thru 5/4/25) | 4 | $0 | $0 | $0 | $0 |
| Jill Goldman | Director | 2 | $0 | $0 | $0 | $0 |
| Joe Esposito | Director (eff 5/3/25) | 2 | $0 | $0 | $0 | $0 |
| Joseph Marquez | Director | 2 | $0 | $0 | $0 | $0 |
| Kathy Mele | Director | 3 | $0 | $0 | $0 | $0 |
| Kim Torres | Director | 2 | $0 | $0 | $0 | $0 |
| Kristin Holloway | Director | 2 | $0 | $0 | $0 | $0 |
| Kristin Schneeman | Director | 3 | $0 | $0 | $0 | $0 |
| Kyle Birmingham | Director | 3 | $0 | $0 | $0 | $0 |
| Lenn Marquez | Director (eff 5/3/25) | 3 | $0 | $0 | $0 | $0 |
| Marg Sutherland | Director | 2 | $0 | $0 | $0 | $0 |
| Shoshana Krilow | Director | 3 | $0 | $0 | $0 | $0 |
Girish Patangay
Director (eff 5/3/25)
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Halima Amjad
Director
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Helen-Ann Comstock
Director
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Jary Larsen
Director (thru 5/4/25)
$0
Hrs/Wk
4
Compensation
$0
Related Orgs
$0
Other
$0
Jill Goldman
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Joe Esposito
Director (eff 5/3/25)
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Joseph Marquez
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Kathy Mele
Director
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Kim Torres
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Kristin Holloway
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Kristin Schneeman
Director
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Kyle Birmingham
Director
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Lenn Marquez
Director (eff 5/3/25)
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0
Marg Sutherland
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Shoshana Krilow
Director
$0
Hrs/Wk
3
Compensation
$0
Related Orgs
$0
Other
$0