Loading organization details...
Loading organization details...
PROVIDE A PATIENT REGISTRY FOR THOSE AFFLICTED BY FTD, A DEVASTATING NEURODEGENERATIVE DISEASE.
Source: IRS Form 990 (Tax Year 2025)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$871.2K
Program Spending
71%
of total expenses go to program services
Total Contributions
$800.5K
Total Expenses
▼$892.5K
Total Assets
$2.2M
Total Liabilities
▼$236.4K
Net Assets
$2M
Officer Compensation
→N/A
Other Salaries
$461.5K
Investment Income
$70.7K
Fundraising
▼N/A
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 2025 · 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 | $871.2K | $800.5K | $892.5K | $2.2M | $2M |
| 2023IRS e-File | $1M | $946.4K | $955.3K | $2.4M | $2M |
| 2022 | $727.7K | $727.7K | $734.3K | $1.1M | $1.1M |
| 2021 | $439.2K |
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 2025)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Susan Dickinson | Director-aftd Member Repre | 4 | $0 | $320K | $30K | $350K |
| Mitch Appleson | COO And Secretary | 2 | $0 | $255K | $28.6K | $283.6K |
| Penny Dacks | President | 10 | $0 | $226.5K | $17.6K | $244.1K |
Susan Dickinson
Director-aftd Member Repre
$350K
Hrs/Wk
4
Compensation
$0
Related Orgs
$320K
Other
$30K
Mitch Appleson
COO And Secretary
$283.6K
Hrs/Wk
2
Compensation
$0
Related Orgs
$255K
Other
$28.6K
Penny Dacks
President
$244.1K
Hrs/Wk
10
Compensation
$0
Related Orgs
$226.5K
Other
$17.6K
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Carrie Milliard | Registry Director | 40 | $149.4K | $0 | $17.3K | $166.7K |
Carrie Milliard
Registry Director
$166.7K
Hrs/Wk
40
Compensation
$149.4K
Related Orgs
$0
Other
$17.3K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Laura Mitic | Director-bluefield Member | 4 | $0 | $145K | $0 | $145K |
Laura Mitic
Director-bluefield Member
$145K
Hrs/Wk
4
Compensation
$0
Related Orgs
$145K
Other
$0
| $439.2K |
| $344.7K |
| $1.1M |
| $1.1M |
| 2020 | $543.6K | $543.4K | $748K | $1.1M | $997.7K |
| 2019 | $762K | $761.7K | $537.8K | $1.3M | $1.2M |
| 2018 | $489.2K | $486.8K | $369.4K | $1M | $977.9K |
| 2017 | $611.2K | $611.1K | $304K | $876K | $858.1K |
| 2016 | $234.5K | $234.4K | $264.8K | $515.8K | $500.8K |
| 2015 | $358.3K | $358.3K | $77.2K | $472.1K | $456.1K |
| 2022 | 990 | Data |
| 2021 | 990 | Data | PDF not yet published by IRS |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |