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The Association for Frontotemporal Degeneration

EIN 41-2073220 · Kng of Prussa, PA

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$14.4 million
Spending
$11.6 million
Spent on programs
82%
Reserves
47.3 months of spending
Largest source of income
donations and private grants, 86%
Employees
64
Volunteers
605
Highest pay
$350,014, chief executive officer

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 91% of charities in its peer group (medical research, $10m to $100m).

  • Reserves

    35 of 35

    Spendable reserves would cover 47.3 months of spending.

  • Debt

    20 of 20

    It owes 5% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 20% of income.

  • Income trend

    15 of 15

    Income rose 10% on the year before.

  • Spending floor

    15 of 15

    82% of spending went to programs and raising each dollar of donations cost 13 cents.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 44% of charities in its peer group (medical research, $10m to $100m).

  • Independent board

    25 of 25

    21 of 21 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $3.8 million spent. 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.
  2. $2.4 million spent. EDUCATION AND SUPPORTSUPPORT - AFTD UNDERSTANDS THE CHALLENGES THAT FTD PRESENTS TO PATIENTS AND THEIR FAMILIES, AND WORKS HARD TO DEVELOP UNIQUE RESOURCES AND INFORMATION THAT WILL IMPROVE QUALITY OF LIFE FOR THOSE LIVING WITH FTD. AFTD STAFF RESPONDED TO 4,203 HELPLINE INQUIRIES IN FY25, A 7 PERCENT INCREASE OVER FY24. AS OF JUNE 30, 2025, THERE ARE 118 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 98 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 659 COMSTOCK GRANTS (TRAVEL, RESPITE, AND QUALITY OF LIFE GRANTS) TO FTD CAREGIVERS AND PERSONS DIAGNOSED. EDUCATION AND INFORMATION -- AFTD COLLABORATES WITH A GROWING NUMBER OF PARTNERS EACH YEAR TO EDUCATE HEALTHCARE PROFESSIONALS ABOUT FTD, WITH A GOAL OF SPEEDING OUR WAY TOWARD ACCURATE DIAGNOSIS AND EFFECTIVE DISEASE MANAGEMENT AND TREATMENT. AFTD'S 2025 EDUCATION CONFERENCE, HELD IN PERSON IN DENVER AND ONLINE VIA LIVESTREAM, DREW 1,195 ATTENDEES COMBINED. THE CONFERENCE FEATURED EXPERTS FAMILIAR WITH FTD AND THE AFTD COMMUNITY TO COMPREHENSIVELY DISCUSS CONTENT PERTINENT TO PEOPLE LIVING WITH OR AFFECTED BY FTD, AS WELL AS HEALTHCARE PROFESSIONALS SEEKING GREATER UNDERSTANDING OF THIS DISEASE. AFTD OFFERED 10 EXPERT-LED EDUCATIONAL WEBINARS, INCLUDING ONE WITH THE FTD DISORDERS REGISTRY AND TWO WEBINARS THAT OFFERED CONTINUING EDUCATION CREDITS TO VIEWERS. AFTD ALSO PUBLISHED FOUR ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS.
  3. $3.3 million spent. ADVOCACY AND AWARENESS - OUR COMMUNITY IS LEADING THE WAY TO SEND THE MESSAGE THAT DEMENTIA IS A MULTI-FACETED DISEASE THAT CAN OCCUR AT A YOUNG AGE AND BEGIN WITH SYMPTOMS UNRELATED TO MEMORY. AFTD IS WORKING HARD TO ENSURE THAT THIS MESSAGE IS HEARD IN WASHINGTON DC AND OTHER SEATS OF POWER, WHERE DECISIONS ABOUT RESEARCH FUNDING AND SERVICES ARE MADE. AFTD'S ADVOCACY ACTION CENTER MOBILIZES ADVOCATES ACROSS OUR COMMUNITY BY PROVIDING CLEAR GUIDANCE ON HOW TO TAKE ACTION IN SUPPORT OF LEGISLATIVE, POLICY, AND REGULATORY CHANGES TO IMPROVE QUALITY OF CARE AND QUALITY OF LIFE FOR PEOPLE WITH FTD AND THEIR FAMILIES. AS OF FY25, 2,259 INDIVIDUALS ARE RAISING THEIR VOICES THROUGH OUR ADVOCACY PLATFORM.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending June 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since January 2004.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.