The Association For Frontotemporal Degeneration
Organization summary
Type of Nonprofit
Designated as a Organizations for any of the following purposes: religious, educational, charitable, scientific, literary, testing for public safety, fostering national or international amateur sports competition (as long as it doesn't provide athletic facilities or equipment), or the prevention of cruelty to children or animals.
Category: Medical Research / Fund Raising and/or Fund Distribution (NTEE)
Donations to this organization are tax deductible.
Summary charts: organization finances over time
Revenue $13.1M (2024)
Expenses $11.5M (2024)
Total Assets $54M (2024)
Total Liabilities $3.39M (2024)
Tax Filings by Year
Form 990 is an information return that most organizations claiming federal tax-exempt status must file yearly with the IRS. Nonprofit Explorer has IRS digitized Form 990 data for filings processed in 2012 and later. If this organization filed an amended return, it may not be reflected below. Duplicate download links may indicate a resubmission or amendment to this organization's original return. Form 990 data is from the IRS.
Fiscal Year Ending June
2024
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $12,361,972 |
94.1%
|
| Program Services | $2,204 |
0.0%
|
| Investment Income | $1,153,617 |
8.8%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$291,341 | |
| Sales of Assets | -$253,832 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $166,500 |
1.3%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $672,161 |
5.8%
|
| Professional Fundraising Fees | $70,000 |
0.6%
|
| Other Salaries and Wages | $3,909,426 |
33.9%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $53,971,673 | |
| Total Liabilities | $3,390,530 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan L J Dickinson (Chief Executive Officer) | $299,604 | $0 | $27,277 |
| Mitch Appleson (Chief Operating Officer) | $239,433 | $0 | $30,583 |
| Penny Dacks (Sr. Director Of Scientific Initiatives) | $215,668 | $0 | $15,410 |
Document Links
990
Filed on Nov. 13, 2024Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2023
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $8,797,440 |
> 100%
|
| Program Services | $2,051 |
0.0%
|
| Investment Income | $1,186,362 |
13.9%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$264,870 | |
| Sales of Assets | -$1,221,995 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $38,428 |
0.5%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $586,637 |
6.1%
|
| Professional Fundraising Fees | $70,000 |
0.7%
|
| Other Salaries and Wages | $3,448,722 |
35.7%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $47,470,345 | |
| Total Liabilities | $2,415,381 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan L J Dickinson (Chief Executive Officer) | $302,707 | $0 | $27,628 |
| Penny Dacks (Sr. Director Of Scientific Initiatives) | $207,678 | $0 | $15,798 |
| Christine Rogers Stevens (Director Of Finance) | $180,146 | $0 | $26,752 |
Document Links
990
Filed on Nov. 8, 2023Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2022
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $12,078,806 |
> 100%
|
| Program Services | $1,145 |
0.0%
|
| Investment Income | $400,405 |
3.3%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$227,329 | |
| Sales of Assets | -$207,280 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $12,211 |
0.1%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $566,563 |
6.6%
|
| Professional Fundraising Fees | $95,000 |
1.1%
|
| Other Salaries and Wages | $2,384,791 |
27.8%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $44,796,969 | |
| Total Liabilities | $2,227,394 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan L J Dickinson (Chief Executive Officer) | $226,222 | $0 | $24,592 |
| Penny Dacks (Sr Director Of Scientific Initiatives) | $197,475 | $0 | $14,834 |
| Christine Rogers Stevens (Chief Financial Officer) | $184,890 | $0 | $25,615 |
Document Links
990
Filed on Dec. 19, 2022Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2021
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $28,142,577 |
98.7%
|
| Program Services | $13,363 |
0.0%
|
| Investment Income | $271,150 |
1.0%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $100,201 |
0.4%
|
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $380,753 |
5.0%
|
| Professional Fundraising Fees | $35,000 |
0.5%
|
| Other Salaries and Wages | $1,813,051 |
23.8%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $44,786,288 | |
| Total Liabilities | $1,900,846 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan L J Dickinson (Chief Executive Officer) | $210,961 | $0 | $14,364 |
| Christine Rogers Stevens (Chief Financial Officer) | $141,535 | $0 | $21,849 |
| Sharon Denny (Sr Director Of Programs) | $135,054 | $0 | $4,211 |
Document Links
990
Filed on Nov. 10, 2021Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2020
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $9,299,005 |
98.3%
|
| Program Services | $99,956 |
1.1%
|
| Investment Income | $207,149 |
2.2%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$34,737 | |
| Sales of Assets | -$116,259 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $322,606 |
4.2%
|
| Professional Fundraising Fees | $65,000 |
0.8%
|
| Other Salaries and Wages | $1,679,802 |
21.7%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $23,888,583 | |
| Total Liabilities | $2,961,736 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan L J Dickinson (Chief Executive Officer) | $196,500 | $0 | $13,161 |
| Nadine Tatton (Scientific Director) | $156,000 | $0 | $19,419 |
| Christine Rogers Stevens (Chief Financial Officer) | $136,875 | $0 | $21,068 |
Document Links
990
Filed on Sept. 30, 2020Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2019
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $8,919,063 |
97.6%
|
| Program Services | $150,345 |
1.6%
|
| Investment Income | $179,830 |
2.0%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$81,551 | |
| Sales of Assets | -$25,744 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $353,794 |
5.1%
|
| Professional Fundraising Fees | $65,000 |
0.9%
|
| Other Salaries and Wages | $1,315,099 |
18.8%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $21,156,373 | |
| Total Liabilities | $2,033,467 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan L J Dickinson (Chief Executive Officer) | $182,250 | $0 | $8,008 |
| Nadine Tatton (Scientific Director) | $149,670 | $0 | $19,341 |
| Christine Rogers Stevens (Chief Financial Officer) | $122,737 | $0 | $20,584 |
Document Links
990
Filed on Oct. 9, 2019Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2018
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $14,621,068 |
98.8%
|
| Program Services | $186,178 |
1.3%
|
| Investment Income | $63,330 |
0.4%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$68,679 | |
| Sales of Assets | $102 |
0.0%
|
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $310,028 |
6.7%
|
| Professional Fundraising Fees | $65,000 |
1.4%
|
| Other Salaries and Wages | $1,241,387 |
26.9%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $17,543,745 | |
| Total Liabilities | $744,795 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Nadine Tatton (Scientific Director) | $144,450 | $0 | $17,670 |
| Susan L J Dickinson (Chief Executive Officer) | $142,000 | $0 | $4,725 |
| Benjamin Freeman (Dir Of Development & Communications) | $113,261 | $0 | $3,503 |
Document Links
990
Filed on Oct. 3, 2018Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2017
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $4,190,242 |
96.7%
|
| Program Services | $0 | |
| Investment Income | $2,783 |
0.1%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$14,336 | |
| Sales of Assets | -$51 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $154,342 |
3.6%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $170,720 |
3.0%
|
| Professional Fundraising Fees | $51,576 |
0.9%
|
| Other Salaries and Wages | $1,070,078 |
18.9%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $8,259,790 | |
| Total Liabilities | $1,303,075 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan Dickinson (Chief Executive Officer) | $142,500 | $0 | $13,250 |
| Nadine Tatton (Scientific Director) | $138,500 | $0 | $15,571 |
| Benjamin Freeman (Development & Communications Director) | $116,304 | $0 | $4,517 |
Document Links
990
Filed on Oct. 4, 2017Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2016
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $8,057,371 |
98.5%
|
| Program Services | $0 | |
| Investment Income | $2,106 |
0.0%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $296 |
0.0%
|
| Net Inventory Sales | $0 | |
| Other Revenue | $123,761 |
1.5%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $123,600 |
4.6%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $869,420 |
32.5%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $8,752,417 | |
| Total Liabilities | $434,468 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan Dickinson (Executive Director) | $120,000 | $0 | $3,600 |
| Bonnie Shepherd (Secretary) | $0 | $0 | $0 |
| Jary Larsen Phd (Immediate Past Chair) | $0 | $0 | $0 |
Document Links
990
Filed on Nov. 8, 2016Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2015
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $2,162,391 |
98.8%
|
| Program Services | $0 | |
| Investment Income | $2,637 |
0.1%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $22,773 |
1.0%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $111,583 |
5.7%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $572,412 |
29.2%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $3,039,423 | |
| Total Liabilities | $317,925 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan Dickinson (Executive Director) | $108,333 | $0 | $3,250 |
| Bonnie Shepherd (Secretary) | $0 | $0 | $0 |
| Jary Larsen Phd (Chair) | $0 | $0 | $0 |
Document Links
990
Filed on Oct. 15, 2015Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2014
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $2,678,682 |
> 100%
|
| Program Services | $0 | |
| Investment Income | $2,770 |
0.1%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$5,474 | |
| Sales of Assets | -$4,902 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $5,559 |
0.2%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $99,997 |
7.4%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $505,050 |
37.3%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $2,513,073 | |
| Total Liabilities | $14,557 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Susan Dickinson (Executive Director) | $97,084 | $0 | $2,913 |
| Bonnie Shepherd (Secretary) | $0 | $0 | $0 |
| Jary Larsen Phd (Chair) | $0 | $0 | $0 |
Document Links
990
Filed on Oct. 30, 2014Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2013
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $1,230,706 |
100.0%
|
| Program Services | $0 | |
| Investment Income | $2,810 |
0.2%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$7,080 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $4,774 |
0.4%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $95,060 |
8.2%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $394,344 |
33.9%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $1,238,370 | |
| Total Liabilities | $60,745 |
Document Links
990
Filed on Dec. 16, 2013Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending June
2012
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $454,151 |
98.7%
|
| Program Services | $0 | |
| Investment Income | $1,925 |
0.4%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $5 |
0.0%
|
| Net Inventory Sales | $0 | |
| Other Revenue | $3,920 |
0.9%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $44,585 |
9.3%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $177,831 |
37.1%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $1,190,461 | |
| Total Liabilities | $82,089 |
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2011
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $1,019,341 |
98.5%
|
| Program Services | $0 | |
| Investment Income | $4,566 |
0.4%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $659 |
0.1%
|
| Net Inventory Sales | $0 | |
| Other Revenue | $10,464 |
1.0%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $83,917 |
8.7%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $255,455 |
26.6%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $1,232,413 | |
| Total Liabilities | $105,259 |
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2010
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2009
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2008
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990-EZ
Short form tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2007
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2006
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2005
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2004
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
About This Data
Nonprofit Explorer includes summary data for nonprofit tax returns and full Form 990 documents, in both PDF and digital formats.
The summary data contains information processed by the IRS during the 2012-2019 calendar years; this generally consists of filings for the 2011-2018 fiscal years, but may include older records. This data release includes only a subset of what can be found in the full Form 990s.
In addition to the raw summary data, we link to PDFs and digital copies of full Form 990 documents wherever possible. This consists of separate releases by the IRS of Form 990 documents processed by the agency, which we update regularly.
We also link to copies of audits nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year since 2016. These audits are copied from the Federal Audit Clearinghouse.