The Association for Frontotemporal Degeneration

Nonprofit profile at a glance

EIN: 412073220
IRS 990 coverage: 2011–2024
Forms available: Form 990 2024
Location: King of Prussia, PA, USA
Phone: 2675147221
Rating: 78
Verdict: SUPPORTED
Rating confidence: Moderate
Sector: Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue: $14,420,554
Expenses: $11,559,795
Assets: $60,143,025
Liabilities: $3,243,046

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

29 people listed

Executive titles in this filing

SUSAN L-J DICKINSON (CHIEF EXECUTIVE OFFICER)

Highest reported compensation

SUSAN L-J DICKINSON (CHIEF EXECUTIVE OFFICER): $350,014 total reported compensation
MITCH APPLESON (CHIEF OPERATING OFFICER): $283,585 total reported compensation
PENNY DACKS (SR DIRECTOR OF SCIENTIFIC INITIATIVES): $244,063 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

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.

What it reported doing in 2024

Research - each year aftd invests in the science that will drive discovery and development of accurate diagnostics and the first therapeutics for ftd. To that end, aftd awarded eight grants during fy25, including three pilot grants awarded through the aftd pathways for hope pilot grant program.aftd delivered three awards through the accelerating drug discovery program in collaboration with addf. Dr. Jeffrey rothstein of johns hopkins university and his team will use the award to evaluate a novel therapeutic to correct a problem at the heart of ftd associated with the accumulation of the protein tdp-43.(continuted in schedule o)aftd awarded three holloway postdoctoral fellowships - one to a researcher working on a project targeting contributions to white matter hyperintensities in bahavioral variant ftd, another to a researcher working on leveraging a large grn family to identify resilience factors in ftd, and the last to develop an educational support group program for latino and hispanic caregivers. Aftd also awarded a clinical research training scholarship to investigate the molecular role of specific inclusions in ftd-als, funded through the generous support of the holloway family fund, with additional support from the american brain foundation in collaboration with the american academy of neurology.aftd continued to support the ftd disorders registry, an electronic database that collects information about the ftd experience from persons diagnosed and ftd care partners. This essential source of first-hand accounts will help inform researchers and clinicians, and will spur innovation that will lead to better diagnoses and therapies for people living with ftd. At the end of fy25, 8,537 people had joined the registry.in collaboration with the ftd disorders registry, aftd presented one perspectives in ftd research webinar addressing ftd research 2024. It was our most popular webinar for the fy25 and had a 63% attendance rate.

Operating model

Revenue model: Donor-supported. 88% of the money available for current operations came from contributions and gifts.
Distribution model: Hybrid. The nonprofit split its reported program spending across 79% for direct work, and 21% for grants.

Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

Financial Efficiency: 70
Transparency & Controls: 71
Accountability: 100
Sustainability: 74
Growth: 100

Detailed rating inputs

Financial Efficiency

Mission deployment rate: 71.4%; rating input score 71
Program expense ratio: 81.8%; rating input score 82
Fundraising efficiency: $7.56 raised per $1 spent on fundraising; rating input score 31; 31st percentile among comparable filings

Transparency & Controls

Consistency checks: 100%; rating input score 100; 62nd percentile among comparable filings
Pay-setting controls: 2 of 6 controls in place; rating input score 33
- Compensation committee: Missing
- Independent consultant: Missing
- Other Form 990s reviewed: Missing
- Written employment contract: Missing
- Compensation survey or study: Pass
- Board or committee approval: Pass
Foreign activity oversight: 2 of 8 controls in place; rating input score 25
- Claims monitoring procedures: Pass
- Requires narrative reports: Pass
- Conducts field audits: Fail
- May suspend future funding: Fail
- Requires financial reports: Fail
- Conducts site visits: Fail
- Requires grant agreements: Fail
- May require repayment: Fail
Grant itemization coverage: 100%; rating input score 100; 72nd percentile among comparable filings
Major donor itemization: Yes; rating input score 100
Related-party transparency: Limited

Accountability

Independent voting board: 100%; rating input score 100; 66th percentile among comparable filings
Governance controls: 9 of 9 controls in place; rating input score 100
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: Pass
- Other executive compensation review process: Pass
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass

Sustainability

Operating margin: 19.8%; rating input score 82; 82nd percentile among comparable filings
Total-asset coverage ratio: 5.2; rating input score 85; 85th percentile among comparable filings
Liabilities to assets ratio: 0.05; rating input score 82; 82nd percentile among comparable filings
Officer compensation ratio: 14%; rating input score 10; 10th percentile among comparable filings

Growth

Program expense growth: 14.8% per year; rating input score 100; 83rd percentile among comparable filings
Revenue growth: 13.3% per year; rating input score 100; 83rd percentile among comparable filings
Asset growth: 21.9% per year; rating input score 100; 91st percentile among comparable filings

Details

Where the money goes: 71.4% of revenue deployed · 81.8% of spending went to programs
Governance: 21 of 21 board members independent · 9 of 9 filing controls reported
Programs: 3 filed program accomplishments · $9.5M in reported program spending
Leadership: top reported pay $350K · 29 people listed · 2 of 6 pay-setting controls reported
Highest-paid contractors: 3 contractors listed · $425K reported
Consistency: 43 of 43 current checks pass
Schedules: 11 filed schedules · includes major donors, foreign activity, grants, and executive pay
Filing history: 13 filing years from 2011 to 2024
Contacts: How to reach this organization
Money network: 13 filed money-flow records
Related organizations: 7 filed related-organization links
Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

High — Transparency & Controls: Foreign activity oversight: 6 of 8 not reported.
Moderate — Financial Efficiency: Fundraising efficiency scored 31/100.
High — Sustainability: Officer compensation ratio scored 10/100.