THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION

As filed

Subsection

03

NTEE code

H124

Classification

1200

Street

2700 HORIZON DR STE 120

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Other organizations at this address

1 other organization in the IRS Business Master File lists the same street address. matched by us

This address is a suite or unit (STE 120). Organizations that share one are often clients of the same office-services firm, accountant or registered agent rather than related to each other.

We match the street line and ZIP code as the IRS gives them, ignoring case and outer spaces and nothing else, so "AVE" and "AVENUE" count as different streets and this list can miss some. A shared address can mean related organizations or a shared office, but it can also be a registered agent, a mail drop or a service provider holding mail for unrelated clients. It is not, by itself, evidence that two organizations are connected.

• FTD DISORDERS REGISTRY LLC

  EIN 47-3601782

Mission and programs · 2024

• Withheld by Nonprofiteer: this text may name a private individual.

  Expenses $3,809,685 · Grants $1,657,793 · Revenue $439,004

• 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.

  Expenses $2,351,223 · Grants $284,926 · Revenue $2,068

• 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.

  Expenses $3,300,365

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here. A text marked withheld matched a screen for wording that may name a private individual, such as an honorific or "in memory of". Most of what it withholds names no one; it is withheld so that what does is never shown.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

The first 25 listed. Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

• 2024

  Revenue

  $14,420,554

  Expenses

  $11,559,795

  Contributions

  $12,345,385

  Grants paid

  $1,942,719

• 2023

  Revenue

  $13,139,120

  Expenses

  $11,526,939

  Contributions

  $12,361,972

  Grants paid

  $2,986,505

• 2022

  Revenue

  $8,537,416

  Expenses

  $9,663,807

  Contributions

  $8,797,440

  Grants paid

  $2,475,799

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $12,057,958

  Expenses

  $8,575,867

  Assets (EOY)

  $44,796,969

• 2020 · 990

  Revenue

  $28,527,291

  Expenses

  $7,615,096

  Assets (EOY)

  $44,786,288

• 2019 · 990

  Revenue

  $9,455,114

  Expenses

  $7,723,528

  Assets (EOY)

  $23,888,583

• 2018 · 990

  Revenue

  $9,141,943

  Expenses

  $6,981,834

  Assets (EOY)

  $21,156,373

• 2017 · 990

  Revenue

  $14,801,999

  Expenses

  $4,610,207

  Assets (EOY)

  $17,543,745

• 2016 · 990

  Revenue

  $4,332,980

  Expenses

  $5,665,227

  Assets (EOY)

  $8,259,790

• 2015 · 990

  Revenue

  $8,183,534

  Expenses

  $2,671,249

  Assets (EOY)

  $8,752,417

• 2014 · 990

  Revenue

  $2,187,801

  Expenses

  $1,960,231

  Assets (EOY)

  $3,039,423

• 2013 · 990

  Revenue

  $2,676,635

  Expenses

  $1,355,744

  Assets (EOY)

  $2,513,073

• 2012 · 990

  Revenue

  — not reported

  Expenses

  $1,161,957

  Assets (EOY)

  $1,238,370

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

• ALZHEIMER'S DRUG DISCOVERY FOUNDATION

  $700,000

  2022 · DRUG DISCOVERY, TREAT FTD INITIATIVE

• ALZHEIMER'S DRUG DISCOVERY FOUNDATION

  $700,000

  2024 · ADDF/AFTD DRUG DISCOVERY PROGRAM AND TREAT TREATFTD THERAPEUTIC INITIATIVE

• ALZHEIMER'S DRUG DISCOVERY FOUNDATION

  $700,000

  2023 · ADDF/AFTD DRUG DISCOVERY PROGRAM AND TREAT AFTD PROGRAMS

• BIOSENSICS LLC

  $399,999

  2023 · AFTD-ALS ASSOC. FTD DIGITAL ASSESSMENT TOOLS

• UCSF

  $350,000

  2023 · AFTD-ALS ASSOC. FTD DIGITAL ASSESSMENT TOOLS

• BLUEFIELD PROJECT TO CURE FTD

  $290,000

  2022 · GENFI RESEARCH CENTER SUPPORT

• THE FTD DISORDERS REGISTRY

  $287,374

  2024 · FTD PATIENT REGISTRY

• INTERNATIONAL SOCIETY FOR FRONTOTEMPORAL DEMENTIAS

  $250,000

  2023 · INTERNATIONAL CONFERENCE SPONSORSHIP AND STRATEGIC PLANNING

• THE FTD DISORDERS REGISTRY

  $250,000

  2023 · FTD PATIENT REGISTRY

• WASHINGTON UNIVERSITY IN ST LOUIS

  $230,000

  2024 · PATHWAYS FOR HOPE PILOT GRANT

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

• ARIZONA COMMUNITY FOUNDATION

  $1,200,000

  2024 · THIS AWARD IS GENERAL SUPPORT FOR AFTDS MISSION.

• NATIONAL PHILANTHROPIC TR

  $1,042,800

  2024 · HEALTH

• NATIONAL PHILANTHROPIC TR

  $1,035,000

  2022 · HEALTH

• NATIONAL PHILANTHROPIC TR

  $1,022,800

  2023 · CULTURE & ARTS

• ARIZONA COMMUNITY FOUNDATION

  $1,000,000

  2022 · GENERAL SUPPORT

• FIDELITY NON-PROFIT MANAGEMENT FOUNDATION

  $800,000

  2024 · DISCOVERY RESEARCH (SCIENCE)

• AMYOTROPHIC LATERAL SCLEROSIS ASSN

  $500,000

  2022 · PARTNERSHIP PROGRAM GRANT

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $384,155

  2024 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $237,785

  2022 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $232,401

  2023 · For grant recipient's exempt purposes

The 10 largest by cash amount. The API serves every itemized grant.

Related organizations

From Schedule R Part II, where a filer lists the tax-exempt organizations it is related to by control. It does not record shared board members or money.

Other IRS files