Form 990 for tax year 2022

Totals

Total revenue

$8,537,416

Total expenses

$9,663,807

Contributions and grants received

$8,797,440

Grants paid

$2,475,799

Program service revenue

$2,051

Investment income

-$35,633

Other revenue

-$226,442

Total assets, end of year

$47,470,345

Total liabilities, end of year

$2,415,381

Net assets or fund balances, end of year

$45,054,964

Program services expenses (Part IX)

$7,834,399

Management and general expenses

$706,133

Fundraising expenses

$1,123,275

Program service expenses (Part III)

$7,834,399

Program services were 81.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• 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 NINE GRANTS DURING FY23, INCLUDING THREE PILOT GRANTS.THROUGH THE DIAGNOSTICS ACCELERATOR PROGRAM, A COLLABORATION WITH THE ALZHEIMER'S DRUG DISCOVERY FOUNDATION, AFTD GAVE ONE AWARD.AFTD DELIVERED TWO AWARDS THROUGH THE ACCELERATING DRUG DISCOVERY PROGRAM IN COLLABORATION WITH ADDF. AWARDEES IN THESE PROGRAMS WILL WORK TO DEVELOP A BLOOD-BASED ASSAY TO DETECT LEVELS OF SEVERAL BIOMARKERS INDICATING NEUROINFLAMMATION THAT IS LINKED TO FTD, AS WELL AS RESEARCH DRUGS DESIGNED TO PREVENT OR UNDO DISEASE-CAUSING CHANGES IN THE BRAIN. AFTD AWARDED TWO HOLLOWAY POSTDOCTORAL FELLOWSHIPS ONE TO A RESEARCHER WORKING ON NOVEL THERAPEUTICS TARGETING A COMMON FTD PATHOLOGY, THE OTHER TO A RESEARCHER DEVELOPING A VIRTUAL REALITY GAME DESIGNED TO BENEFIT THE SOCIAL COGNITION OF PEOPLE LIVING WITH FTD. AFTD ALSO AWARDED A CLINICAL RESEARCH TRAINING SCHOLARSHIP, 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.BUILDING ON THE KNOWLEDGE THAT THE C9ORF72 MUTATION CAN CAUSE BOTH FTD AND ALS, AFTD PARTNERED WITH THE ALS ASSOCIATION TO LAUNCH THE DIGITAL ASSESSMENT TOOLS FOR FTD AND ALS AWARDS TO DRIVE PROGRESS IN COLLABORATIVE DIGITAL TOOL DEVELOPMENT AT THE INTERSECTION OF BOTH DISEASES. AFTD CONTINUED TO SUPPORT THE FTD DISORDER 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 FY23, 6,081 PEOPLE HAD JOINED THE REGISTRY.IN COLLABORATION WITH THE FTD DISORDERS REGISTRY, AFTD PRESENTED THREE PERSPECTIVES IN FTD RESEARCH WEBINARS ADDRESSING TOPICS SUCH AS DIFFERENTIATING BETWEEN TYPES OF RESEARCH STUDIES, HOW FTD-FOCUSED THERAPEUTIC DEVELOPMENT HAS EVOLVED, THE CURRENT CLINICAL TRIAL LANDSCAPE, AND HOW PEOPLE CAN GET INVOLVED, AND WHAT TO CONSIDER WHEN THINKING ABOUT BRAIN DONATION AS PART OF THE FTD JOURNEY.

  Expenses $3,441,634 · Grants $1,506,341 · Revenue $38,428

• 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 3,379 HELPLINE INQUIRIES IN FY23 - A 45 PERCENT INCREASE OVER FY22. AS OF JUNE 30, 2023, THERE ARE 104 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 77 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 748 COMSTOCK GRANTS (TRAVEL, RESPITE AND QUALITY OF LIFE GRANTS) TO FTD CAREGIVERS AND PERSONS DIAGNOSED - A 68 PERCENT INCREASE OVER THE PREVIOUS FISCAL YEAR. 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 2023 EDUCATION CONFERENCE, HELD IN PERSON IN ST. LOUIS AND ONLINE VIA LIVESTREAM, DREW MORE THAN 900 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 SIX EXPERT-LED EDUCATIONAL WEBINARS, INCLUDING THREE WITH THE FTD DISORDERS REGISTRY AND FOUR WEBINARS THAT OFFERED CONTINUING EDUCATION CREDITS TO VIEWERS. AFTD ALSO PUBLISHED THREE ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES.

  Expenses $2,118,362 · Grants $874,435 · Revenue $2,051

• 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.

  Expenses $2,274,403 · Grants $95,023

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

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.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• ALZHEIMER'S DRUG DISCOVERY FOUNDATION

  $700,000

  DRUG DISCOVERY, TREAT FTD INITIATIVE

• BLUEFIELD PROJECT TO CURE FTD

  $290,000

  GENFI RESEARCH CENTER SUPPORT

• UCSF

  $110,000

  PILOT GRANT - DANIEL MORDES

• BAYLOR COLLEGE OF MEDICINE

  $110,000

  PILOT GRANT - STEVEN BOEYNAEMS

• UNIVERSITY OF MICHIGAN

  $109,784

  PILOT GRANT - ALEXANDRU IORDAN

• AMERICAN BRAIN FOUNDATION

  $100,000

  CLINICAL RESEARCH TRAINING SCHOLARSHIP IN FTD

• THE TANK LTD

  $95,023

  UNRAVELLED

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

• THE FTD DISORDERS REGISTRY LLC

  501(C)(3) · PROVIDES PATIENT REGISTRY FOR THOSE AFFECTED BY FTD · DE

  Directly controlled by THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION

Provenance

Return type

form_990

Tax year

2022

Filed

7 November 2023

IRS schema version

2022v5.0

Source object

202313129349302026

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