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
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Make your donationAbout 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.
Verified certifications
Confirmed against the issuing authority - not self-reported.
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 whereHow it stacks up against peers
· vs. 8 similar health in United StatesConcerns
· None foundWhere every $1 goes
· FY2025 · IRS 990 (FY2025)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
- government registration
- financial records (5 filed years)
- disclosed leadership
- a website
- a contact email
- a donation page
- 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 + methodologyThe 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.
Filing history
5 years on file from IRS 990 (FY2025): revenue, expenses, program spending, assets, and liabilities by fiscal year.
See 5 years of revenue, expense breakdowns, and balance sheet.
Sign up to viewTaxes
Tax-deductibility for donors
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.
Always confirm tax treatment with the charity directly or your tax advisor before donating.
Staff & volunteers
From filings and published profiles
Leadership
From FY2025 filing
Officers & trustees (25)
Source: Public filings
25 officers and trustees on file - free with a GiveRadar account.
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
Inside Bruce Willis’ Health Journey: What to Know About the Actor’s Frontotemporal Dementia - People.com
Non-pharmacological Management of Behavioral Symptoms in Frontotemporal and Other Dementias - Psychiatry Online
Diagnosis of Frontotemporal Dementia in Individuals With Late-Onset Behavioral Changes - Neurology® Journals
Somatic mosaicism in ALS and FTD identifies focal mutations associated with widespread degeneration - Nature
An acetylated Tau-174 CSF biomarker discriminates between TDP-43 and tau pathology in patients with frontotemporal lobar degeneration - Nature
The Association for Frontotemporal Degeneration (AFTD) Hosts First Capitol Hill Briefing: “Frontotemporal Degeneration: Shining a Light on a Little-Known Dementia” - Yahoo Finance
Traumatic Brain Injury and Axonal Damage in the Pathogenesis of Frontotemporal Dementia: A Narrative Review - Cureus
Language, behavior problems are first signs of frontotemporal dementia - UCI Health
A repeat expansion in GOLGA8A is a major risk factor for atypical frontotemporal lobar degeneration with ubiquitin-positive inclusions - Nature
Activity timeline
Filings and press mentions, merged
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Sign up to write a reviewCause areas in United States
How many charities work in each area, with this charity's area highlighted.
Most common causes in United States
Causes charities work on most, with this charity's causes ticked.
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
What we know and don't know
Exactly which public data we hold on this charity. Our score reflects transparency, not impact.
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Financial data · FY2025 on record
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Named leadership · 123 officers on file
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Executive pay · Disclosed
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Government registration · Registered with an official registry
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Mission statement · Published
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Official website · On record
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Headquarters address · On file
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Direct contact · Email or phone published
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Tax-deductibility · Verified
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Founding date · 2002
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Programs & activitiesNo 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 methodologyAre you the owner or a board member?
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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 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