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Nonprofiteer
← THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION

Form 990 for tax year 2023

Filed by THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION.

Totals

Total revenue
$13,139,120
Total expenses
$11,526,939
Contributions and grants received
$12,361,972
Grants paid
$2,986,505
Program service revenue
$2,204
Investment income
$899,785
Other revenue
-$124,841
Total assets, end of year
$53,971,673
Total liabilities, end of year
$3,390,530
Net assets or fund balances, end of year
$50,581,143
Program services expenses (Part IX)
$9,922,194
Management and general expenses
$537,803
Fundraising expenses
$1,066,942
Program service expenses (Part III)
$9,922,194

Program services were 86.1% 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.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $1,915,076

  • 1f · All other contributions, gifts and grants

    $10,446,896

  • 1g · Noncash contributions included above

    $76,999

  • 2a · Program service revenue: EDUC & AWARENESS PRODUCT SALES

    total $2,204 · related or exempt $2,204

  • 3 · Investment income

    total $1,153,617 · excluded $1,153,617

  • 7a · Gross sales of assets other than inventory

    securities $14,614,259

  • 7b · Less cost or other basis and sales expenses

    securities $14,868,091

  • 7c · Gain or loss

    securities -$253,832

  • 7d · Net gain or loss

    total -$253,832 · excluded -$253,832

  • 8a · Fundraising events: gross income

    $144,667

  • 8a · Fundraising events: contributions included on line 1c

    $1,915,076

  • 8b · Fundraising events: direct expenses

    $436,008

  • 8c · Net income from fundraising events

    total -$291,341 · excluded -$291,341

  • 11a · Other revenue: FTD REGISTRY

    total $166,500 · related or exempt $166,500

  • 11e · Other revenue, total

    $166,500

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $2,524,999 · program services $2,524,999

  • 2 · Grants to domestic individuals

    total $241,506 · program services $241,506

  • 3 · Grants to foreign organizations and individuals

    total $220,000 · program services $220,000

  • 5 · Compensation of officers, directors and key employees

    total $672,161 · program services $405,074 · management and general $152,817 · fundraising $114,270

  • 7 · Other salaries and wages

    total $3,909,426 · program services $3,163,277 · management and general $156,762 · fundraising $589,387

  • 8 · Pension plan contributions

    total $102,877 · program services $83,323 · management and general $3,595 · fundraising $15,959

  • 9 · Other employee benefits

    total $401,820 · program services $316,675 · management and general $21,694 · fundraising $63,451

  • 10 · Payroll taxes

    total $338,096 · program services $264,359 · management and general $21,856 · fundraising $51,881

  • 11c · Fees: accounting

    total $79,464 · management and general $79,464

  • 11e · Fees: professional fundraising services

    total $70,000 · fundraising $70,000

  • 11g · Fees: other

    total $487,251 · program services $395,201 · management and general $15,141 · fundraising $76,909

  • 12 · Advertising and promotion

    total $162,297 · program services $162,297

  • 13 · Office expenses

    total $40,459 · program services $21,998 · management and general $11,041 · fundraising $7,420

  • 14 · Information technology

    total $492,241 · program services $395,050 · management and general $24,008 · fundraising $73,183

  • 16 · Occupancy

    total $241,433 · program services $177,908 · management and general $18,620 · fundraising $44,905

  • 17 · Travel

    total $313,908 · program services $244,691 · management and general $6,907 · fundraising $62,310

  • 19 · Conferences, conventions and meetings

    total $746,822 · program services $734,897 · management and general $11,255 · fundraising $670

  • 22 · Depreciation, depletion and amortization

    total $9,106 · program services $6,511 · management and general $774 · fundraising $1,821

  • 23 · Insurance

    total $31,466 · program services $23,516 · management and general $1,872 · fundraising $6,078

  • 24a · Other expenses: DUES AND SUBSCRIPTIONS

    total $225,673 · program services $217,376 · management and general $4,792 · fundraising $3,505

  • 24b · Other expenses: MISC ADVOCACY AND AWARE

    total $167,037 · program services $134,572 · fundraising $32,465

  • 24c · Other expenses: PRINTING AND COPYING

    total $132,282 · program services $95,923 · management and general $616 · fundraising $35,743

  • 24d · Other expenses: BANK & CREDIT CARD FEES

    total $59,158 · program services $661 · management and general $1,056 · fundraising $57,441

  • 24e · All other expenses

    total -$142,543 · program services $92,380 · management and general $5,533 · fundraising -$240,456

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $288,666 · end of year $572,093

  • 2 · Savings and temporary cash investments

    beginning of year $6,186,229 · end of year $2,593,871

  • 3 · Pledges and grants receivable

    beginning of year $5,345,553 · end of year $7,229,199

  • 4 · Accounts receivable

    beginning of year $16,691 · end of year $127,647

  • 9 · Prepaid expenses and deferred charges

    beginning of year $148,697 · end of year $95,209

  • 10a · Land, buildings and equipment: cost or other basis

    $76,791

  • 10b · Land, buildings and equipment: accumulated depreciation

    $52,237

  • 10c · Land, buildings and equipment, net

    beginning of year $33,661 · end of year $24,554

  • 11 · Investments: publicly traded securities

    beginning of year $34,826,459 · end of year $42,853,060

  • 15 · Other assets

    beginning of year $624,389 · end of year $476,040

  • 17 · Accounts payable and accrued expenses

    beginning of year $496,632 · end of year $726,636

  • 18 · Grants payable

    beginning of year $1,052,178 · end of year $1,734,688

  • 19 · Deferred revenue

    beginning of year $198,744 · end of year $421,417

  • 25 · Other liabilities

    beginning of year $667,827 · end of year $507,789

  • 27 · Net assets without donor restrictions

    beginning of year $36,911,305 · end of year $41,033,313

  • 28 · Net assets with donor restrictions

    beginning of year $8,143,659 · end of year $9,547,830

Mission and programs · 2023

Mission

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.

Activities or mission (Part I)

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.

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

    Expenses $4,913,453 · Grants $2,494,999 · Revenue $166,500

  • 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 3,927 HELPLINE INQUIRIES IN FY24 A 16 PERCENT INCREASE OVER FY23. AS OF JUNE 30, 2024, THERE ARE 104 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 84 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 753COMSTOCK 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 2024 EDUCATION CONFERENCE, HELD IN PERSON IN HOUSTON AND ONLINE VIA LIVESTREAM, DREW 1,061 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 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 $2,153,716 · Grants $491,506 · Revenue $2,204

  • 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. IN FY24, AFTD LAUNCHED ITS ADVOCACY ACTION CENTER, WHICH PROVIDES GUIDANCE FOR MEMBERS OF AFTD'S COMMUNITY WHO WANT TO ADVOCATE FOR LEGISLATIVE, POLICY, AND REGULATORY CHANGES THAT WILL IMPROVE QUALITY OF CARE AND QUALITY OF LIFE FOR PEOPLE WITH FTD AND THEIR FAMILIES.

    Expenses $2,855,025

As filed on the 2023 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.

Listed in Part VII

  • Kim Torres

    CHAIR

    Total calculated
    $0
    Hours/week
    5

  • Rita Choula

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    5

  • Julie Kelly

    TREASURER

    Total calculated
    $0
    Hours/week
    4

  • Gail Anderson

    SECRETARY

    Total calculated
    $0
    Hours/week
    4

  • Jill Goldman

    DIRECTOR (EFF 5/4/24)

    Total calculated
    $0
    Hours/week
    2

  • Halima Amjad

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Helen-Ann Comstock

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Sandra Grow

    DIRECTOR (THRU 5/4/24)

    Total calculated
    $0
    Hours/week
    3

  • Kristin Holloway

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Kyle Brimingham

    DIRECTOR (EFF 5/4/24)

    Total calculated
    $0
    Hours/week
    2

  • Shoshana Krilow

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Jary Larsen

    DIRECTOR

    Total calculated
    $0
    Hours/week
    4

  • Joseph Marquez

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Kathy Mele

    DIRECTOR

    Total calculated
    $0
    Hours/week
    4

  • Don Newhouse

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Kristin Schneeman

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Marg Sutherland

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Abrar Tanveer

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Valerie Snow

    DIRECTOR (EFF 5/4/24)

    Total calculated
    $0
    Hours/week
    2

  • David Pfeifer

    DIRECTOR (THRU 5/4/24)

    Total calculated
    $0
    Hours/week
    2

  • Susan L-J Dickinson

    CHIEF EXECUTIVE OFFICER

    Total calculated
    $326,881
    From this org
    $299,604
    From related orgs
    $0
    Other
    $27,277
    Hours/week
    36 + 4 related

    Schedule J breakdown matched by us

    Base
    $299,208
    Bonus
    $0
    Other
    $396
    Deferred
    $8,935
    Nontaxable benefits
    $18,342
    Filer's total
    $326,881

  • Mitch Appleson

    CHIEF OPERATING OFFICER

    Total calculated
    $270,016
    From this org
    $239,433
    From related orgs
    $0
    Other
    $30,583
    Hours/week
    38 + 2 related

    Schedule J breakdown matched by us

    Base
    $239,373
    Bonus
    $0
    Other
    $60
    Deferred
    $7,478
    Nontaxable benefits
    $23,105
    Filer's total
    $270,016

  • Penny Dacks

    SR. DIRECTOR OF SCIENTIFIC INITIATIVES

    Total calculated
    $231,078
    From this org
    $215,668
    From related orgs
    $0
    Other
    $15,410
    Hours/week
    30 + 10 related

    Schedule J breakdown matched by us

    Base
    $215,608
    Bonus
    $0
    Other
    $60
    Deferred
    $6,462
    Nontaxable benefits
    $8,948
    Filer's total
    $231,078

  • Christine Rogers Stevens

    DIRECTOR OF FINANCE (THRU 9/24)

    Total calculated
    $208,376
    From this org
    $182,806
    From related orgs
    $0
    Other
    $25,570
    Hours/week
    36 + 4 related

    Schedule J breakdown matched by us

    Base
    $182,577
    Bonus
    $0
    Other
    $229
    Deferred
    $5,460
    Nontaxable benefits
    $20,110
    Filer's total
    $208,376

  • Benjamin Freeman

    DIR OF DEV & COMM (THRU 1/24)

    Total calculated
    $165,214
    From this org
    $160,117
    From related orgs
    $0
    Other
    $5,097
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $160,031
    Bonus
    $0
    Other
    $86
    Deferred
    $4,776
    Nontaxable benefits
    $321
    Filer's total
    $165,214

  • Sharon Denny

    SR. DIRECTOR OF PROGRAMS

    Total calculated
    $187,441
    From this org
    $163,623
    From related orgs
    $0
    Other
    $23,818
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $163,227
    Bonus
    $0
    Other
    $396
    Deferred
    $4,880
    Nontaxable benefits
    $18,938
    Filer's total
    $187,441

  • Peter Witzleb

    DIRECTOR OF IT

    Total calculated
    $167,522
    From this org
    $162,345
    From related orgs
    $0
    Other
    $5,177
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $162,207
    Bonus
    $0
    Other
    $138
    Deferred
    $4,841
    Nontaxable benefits
    $336
    Filer's total
    $167,522

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

Answered yes

  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

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

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

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
2023
Filed
6 November 2024
IRS schema version
2023v5.1
Source object
202403189349300830

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