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The Association for Frontotemporal Degeneration

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 …

The Association For Frontotemporal

Health King Of Prussia, PA EIN: 412073220 (IRS) Sign up to see website
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90
Integrity Assessment
Strong transparency
90/100 · methodology

About The Association for Frontotemporal Degeneration

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.

Founded
Headquarters
King Of Prussia, PA
Foundation type
Publicly-supported charity (509(a)(2))
NTEE code
H124
IRS subsection
501(c)(03)
Ruling date
Size
large

Verified certifications

Confirmed against the issuing authority - not self-reported.

IRS Tax-Deductible since 2004

Mission

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 areas & reach

· What they work on and where
❤️ Health · NTEE H124
Cause tags
SDG alignment The 17 UN Sustainable Development Goals (SDGs) are the global agenda for ending poverty, protecting the planet, and ensuring prosperity by 2030. We tag each charity to the goals its work advances.

How it stacks up against peers

· vs. 8 similar health in United States
Program spending This charity: 82%
Peer average: 85%
CEO comp as % of revenue This charity: 2.08%
Peer average: 0.48%
Integrity Assessment This charity: 90
Peer average: 90

Concerns

· None found
No red flags found
Screened for IRS revocation history, Open investigations, Governance scandals, Related-party deals, Excessive exec comp.

Where every $1 goes

· FY2025 · IRS 990 (FY2025)
$0.82
Program$0.82
82% to programs beats the Charity Navigator "highly efficient" threshold (75%).

GiveRadar Analysis

Original analysis from GiveRadar's dataset of comparable organizations

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
GiveRadar has verified
  • government registration
  • financial records (5 filed years)
  • disclosed leadership
  • a website
  • a contact email
  • a donation page
Not yet verified by GiveRadar
  • an owner-submitted profile claim

Analysis based on GiveRadar's benchmark dataset of 2026-07-03. It describes what GiveRadar has verified, not a judgment of the organization itself.

Common questions

· Auto-generated from filings + methodology

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 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 has a GiveRadar Integrity Assessment of 90/100. This score combines five components: Registration (20 pts), Financial Transparency (30 pts), Governance (20 pts), Contact Availability (10 pts), and Data Recency (20 pts), with negative adjustments for any red flags. A score of 90 ('Strong transparency') reflects well-documented governance, recent financials, named leadership, and working contact details. The charity allocates 82% of expenses to programs, which contributes positively to its score. For comparison, the average integrity assessment for health charities in United States is 90/100.

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.

Based on official tax 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.

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.

No red flags have been detected for The Association for Frontotemporal Degeneration. GiveRadar automatically screens charities for concerning patterns including high executive compensation, low program spending, and missing financial filings. Based on available official data, no issues have been identified.

According to GiveRadar's records, The Association for Frontotemporal Degeneration 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. It is registered with the Internal Revenue Service (IRS). It reports that 82% of expenses go to programs (the peer average is 85%). You can donate directly through their official donation page linked on their GiveRadar profile. GiveRadar provides data for research and does not endorse any organization. A GiveRadar Integrity Assessment reflects how much public data is available, not whether an organization is safe to donate to, so it is always smart to do your own research before giving.

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.

Among health charities registered in United States: It allocates 82% of expenses to programs, in line with the peer average of 85%. Its annual revenue of $14M is below the peer average of $41M.

Yes, donations to The Association for Frontotemporal Degeneration are generally tax-deductible in the United States. The Association for Frontotemporal Degeneration is a 501(c)(3) tax-exempt organization. Its EIN is 412073220, which you can use for tax filing purposes. Donors can typically deduct contributions on their federal income tax return if they itemize deductions. Consult a tax professional for guidance specific to your situation.

Annual revenue
$10M-$100M
82% to programs
Source: IRS 990 (FY2025) why this matters
Unlock exact figures

Filing history

5 years on file from IRS 990 (FY2025): revenue, expenses, program spending, assets, and liabilities by fiscal year.

Years on record: FY2025, FY2024, FY2023, FY2022, FY2021.
Financial details are free - with a GiveRadar account

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Taxes

Tax-deductibility for donors

Donations may be tax-deductible for residents of United States under local rules. Confirm with the charity directly.

Always confirm tax treatment with the charity directly or your tax advisor before donating.

Staff & volunteers

From filings and published profiles

Employees
55

Leadership

From FY2025 filing

SU
Susan L•• D••••••••
Chief Executive Officer

Officers & trustees (25)

Source: Public filings

See full names, roles, and stories

25 officers and trustees on file - free with a GiveRadar account.

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Latest news

From global news sources

10 articles found

From news sources and the organization. Shown for transparency; news never affects the integrity score.

Fundraiser events and awareness for (FTD) Frontotemporal Degeneration - CBS News

www.cbsnews.com ·

Inside Bruce Willis’ Health Journey: What to Know About the Actor’s Frontotemporal Dementia - People.com

people.com ·

Non-pharmacological Management of Behavioral Symptoms in Frontotemporal and Other Dementias - Psychiatry Online

www.psychiatryonline.org ·

Diagnosis of Frontotemporal Dementia in Individuals With Late-Onset Behavioral Changes - Neurology® Journals

www.neurology.org ·

Somatic mosaicism in ALS and FTD identifies focal mutations associated with widespread degeneration - Nature

www.nature.com ·

An acetylated Tau-174 CSF biomarker discriminates between TDP-43 and tau pathology in patients with frontotemporal lobar degeneration - Nature

www.nature.com ·

The Association for Frontotemporal Degeneration (AFTD) Hosts First Capitol Hill Briefing: “Frontotemporal Degeneration: Shining a Light on a Little-Known Dementia” - Yahoo Finance

finance.yahoo.com ·

Traumatic Brain Injury and Axonal Damage in the Pathogenesis of Frontotemporal Dementia: A Narrative Review - Cureus

www.cureus.com ·

Language, behavior problems are first signs of frontotemporal dementia - UCI Health

www.ucihealth.org ·

A repeat expansion in GOLGA8A is a major risk factor for atypical frontotemporal lobar degeneration with ubiquitin-positive inclusions - Nature

www.nature.com ·

Activity timeline

Filings and press mentions, merged

Fundraiser events and awareness for (FTD) Frontotemporal Degeneration - CBS News
Jul 2026
www.cbsnews.com
Inside Bruce Willis’ Health Journey: What to Know About the Actor’s Frontotemporal Dementia - People.com
May 2026
people.com
Non-pharmacological Management of Behavioral Symptoms in Frontotemporal and Other Dementias - Psychiatry Online
May 2026
www.psychiatryonline.org
Diagnosis of Frontotemporal Dementia in Individuals With Late-Onset Behavioral Changes - Neurology® Journals
May 2026
www.neurology.org
Somatic mosaicism in ALS and FTD identifies focal mutations associated with widespread degeneration - Nature
Apr 2026
www.nature.com
An acetylated Tau-174 CSF biomarker discriminates between TDP-43 and tau pathology in patients with frontotemporal lobar
Apr 2026
www.nature.com
The Association for Frontotemporal Degeneration (AFTD) Hosts First Capitol Hill Briefing: “Frontotemporal Degeneration:
Apr 2026
finance.yahoo.com
Traumatic Brain Injury and Axonal Damage in the Pathogenesis of Frontotemporal Dementia: A Narrative Review - Cureus
Mar 2026
www.cureus.com
Language, behavior problems are first signs of frontotemporal dementia - UCI Health
Mar 2026
www.ucihealth.org
A repeat expansion in GOLGA8A is a major risk factor for atypical frontotemporal lobar degeneration with ubiquitin-posit
Mar 2026
www.nature.com
Form filed
$14.4M revenue
FY2025
IRS 990
Form filed
$13.1M revenue
FY2024
IRS 990
Form filed
$8.5M revenue
FY2023
IRS 990
Form filed
$12.1M revenue
FY2022
IRS 990
Form filed
$28.5M revenue
FY2021
IRS 990

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Cause areas in United States

How many charities work in each area, with this charity's area highlighted.

Human Services 322,679
Education 195,586
Arts & Culture 133,128
Advocacy & Civil Rights 128,026
Religion 114,636
Health this charity 98,862
Community Development 56,086
Youth Development 53,450
See all cause areas in United States

Most common causes in United States

Causes charities work on most, with this charity's causes ticked.

Community Development 235,146
Education 159,016
Religion 103,741
Arts & Culture 101,203
Human Rights 76,926
Health 65,250
Youth Development 47,775
Animal Welfare 32,425

Sources and verification

Registration and legal identity
Internal Revenue Service (IRS) - Tax Exempt Organization Search
Financial filings
IRS Form 990 filings - Fiscal year 2025 most recent on file.
Officers and trustees
Internal Revenue Service (IRS) - Tax Exempt Organization Search - 123 disclosed in the public registry.
News and media coverage
GDELT Project + Google News
Supplementary verification
Charity Navigator

Data freshness

Last updated
Jun 12, 2026
Registry checked
Jun 6, 2026
Profile completeness
100%

What we know and don't know

Exactly which public data we hold on this charity. Our score reflects transparency, not impact.

On record · 10
  • Financial data · FY2025 on record
  • Named leadership · 123 officers on file
  • Executive pay · Disclosed
  • Government registration · Registered with an official registry
  • Mission statement · Published
  • Official website · On record
  • Headquarters address · On file
  • Direct contact · Email or phone published
  • Tax-deductibility · Verified
  • Founding date · 2002
Not available · 1
  • Programs & activities
    No named programs listed by the charity

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 methodology

Are you the owner or a board member?

If you represent this organization and want to correct or update its data, you can claim this listing to edit details yourself, or email [email protected] with the correct information. We review every request and respond within 30 days.

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 approximately $10M-$100M. 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