The Association for Frontotemporal Degeneration
The Association For Frontotemporal
About
If you or a loved one are facing FTD, we are with you every step of the way—with reliable information, valuable resources, and support from others who understand.
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.
Focus & reach
Verification & registration
Every mark links to the official registry entry and opens in a new tab.
Integrity assessment
A score from 0 to 100 for how openly a charity shares public information across five areas: registration, financial disclosure, governance, contact details, and data recency. It does not measure programme impact. See exactly what we do and do not have →
Financials
IRS Form 990Leadership at a glance
Official filingsSimilar charities
GiveRadar Intelligence
GiveRadar Analysis
From what GiveRadar has verified so far, The Association for Frontotemporal Degeneration has a complete profile, cross-referenced across 4 independent sources including the IRS.
- By reported annual revenue, it is larger than 85% of the 50,227 health charities in the United States with financial records on GiveRadar. See the filings
- It has more complete contact information than nearly all comparable charities, with a verified website, email, phone and address on record. See national comparisons
- Its integrity score of 90 places it in the top 1% of the 98,862 health charities in the United States GiveRadar tracks, because GiveRadar has verified its financial disclosures and its governance. View this cohort
- government registration
- financial records (5 filed years)
- disclosed leadership
- a website
- a contact email
- a donation page
Analysis based on GiveRadar's benchmark dataset of 2026-07-03. It describes what GiveRadar has verified, not a judgment of the organization itself.
Filing history
5 years on file from IRS Form 990: revenue, expenses, program spending, assets, and liabilities by fiscal year.
See 5 years of revenue, expense breakdowns, and balance sheet.
Sign up to viewTax deductibility
Whether a gift to The Association for Frontotemporal Degeneration lowers your own taxes depends on where you pay them. Choose your country to see the rule that applies.
Donations may be tax-deductible for residents of United States under local rules. Confirm with the charity directly.
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION is registered in United States. Donations from the Netherlands to charities outside the EU/EEA are generally not tax-deductible for Dutch donors unless the charity is listed on the Dutch ANBI register with foreign-recognized status.
This is general guidance, not tax advice. Confirm treatment with the charity or your tax advisor before donating.
Staff & volunteers
Leadership & board
Official filingsBoard members and senior officers on record, with disclosed pay where available.
25 officers and trustees on file, free with a GiveRadar account.
No red flags detected
Timeline
From official filingsKey dates from this charity's official filings, newest first.
In the news
No recent news coverage found
News coverage will appear here when articles mention this organization.
Joint first of 98,862 health charities in the United States on integrity score
The highest integrity score in this cohort (90/100). Positions are competition ranks: ties share a position. Cohorts are the tightest local peer set with at least 30 comparable organizations; a metric is left out where the cohort is too small or nearly uniform.
Bars show the share of the cohort this charity outranks. Ranks describe how much is publicly disclosed, not how good the charity is.
How it stacks up against peers
Compared with 8 similar health charities in United States.
Cause areas in United States
Charities working in each area, this charity's highlighted.
Sources and verification
- Officers and trustees
- Internal Revenue Service (IRS) - Tax Exempt Organization Search · 123 disclosed in the public registry.
What we know and don't know
Every data point we track for this charity, and whether we have found it. Disclosure only, never a judgment of the charity's work.
Data freshness
How current this profile is, and when we last checked it against the official source.
Methodology
GiveRadar builds each profile primarily from official government charity registries, supplemented where available by third-party nonprofit databases and news archives, and combines it into a single 0-100 integrity assessment. The exact sources for this charity are listed above. We don't take a cut of any donation, ever.
Read full methodologyIf you represent this organization and want to correct or update its data, you can claim this listing to edit details yourself, or email info@giveradar.com with the correct information. We review every request and respond within 30 days.
Frequently asked questions about The Association for Frontotemporal Degeneration
The Association for Frontotemporal Degeneration is a registered health nonprofit based in King Of Prussia, PA, United States. It is registered with the Internal Revenue Service (IRS). It was founded in 2002 and has been operating for 24 years. Its EIN is 412073220. According to GiveRadar's records, it holds active tax-deductible status on the IRS Publication 78 list, which means donations are tax-deductible and the organization is in good standing with the IRS. GiveRadar's Integrity Assessment for the organization is 90/100, which reflects how much public information is available, not whether the charity is legitimate. The organization reports $14M in annual revenue. 123 officers and directors are publicly disclosed. No red flags have been detected.
The Association for Frontotemporal Degeneration's Chief Executive Officer, Susan L-J Dickinson, received $299,604 in reported compensation in its most recent filing (2025). This figure comes straight from the organization's official filing and covers salary plus other reportable pay. Executive pay generally scales with the size and complexity of a nonprofit, so it is best read alongside the organization's revenue and what it does.
Based on official filings, The Association for Frontotemporal Degeneration has $14M in annual revenue. It allocates 82% of expenses to programs and services. This is in line with the average of 85% for health charities in United States. Its revenue is below the peer average of $41M. Create a free GiveRadar account to view the complete financial breakdown with year-over-year trends.
If you or a loved one are facing FTD, we are with you every step of the way—with reliable information, valuable resources, and support from others who understand. The Association for Frontotemporal Degeneration is classified as a health organization registered in United States. The organization was founded in 2002.
The Association for Frontotemporal Degeneration is classified as a Health organization, registered in United States. It operates as a Publicly-supported charity (509(a)(2)). By size, it is categorized as a large organization. It has $14M in annual revenue. The organization has 123 disclosed officers and directors.
The Association for Frontotemporal Degeneration's EIN (Employer Identification Number) is 412073220. This is the organization's IRS tax identification number; you can use it to verify tax-exempt status and to look up its Form 990 filings with the IRS.
The Association for Frontotemporal Degeneration is located in King Of Prussia, PA, United States. The organization was established in 2002 and has been active for 24 years.
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Quick facts about The Association for Frontotemporal Degeneration
- What is The Association for Frontotemporal Degeneration?
- The Association for Frontotemporal Degeneration is a health publicly-supported charity (509(a)(2)) based in King Of Prussia, United States. If you or a loved one are facing FTD, we are with you every step of the way—with reliable information, valuable resources, and support from others who understand.
- When was The Association for Frontotemporal Degeneration founded?
- The Association for Frontotemporal Degeneration was founded in 2002.
- Who leads The Association for Frontotemporal Degeneration?
- Susan L-J Dickinson serves as Chief Executive Officer.
- Where is The Association for Frontotemporal Degeneration located?
- Headquartered in King Of Prussia, PA, United States.
- What is The Association for Frontotemporal Degeneration's annual budget?
- Annual revenue for fiscal year 2025 is $14.4 million. 82% of expenses go to program services.
- Is The Association for Frontotemporal Degeneration trustworthy?
- The Association for Frontotemporal Degeneration has a GiveRadar Integrity Assessment of 90 out of 100 (Strong transparency). The score reflects public-data transparency: registration, financial disclosure, governance, contact details, and how recently data was refreshed. It does not measure program impact.
- What is The Association for Frontotemporal Degeneration's registration number?
- IRS EIN: 412073220.
- What is The Association for Frontotemporal Degeneration's website?
- http://www.theaftd.org