THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION Charity Report

Public IRS 990 nonprofit record

THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION

EIN 41-2073220 · Medical Research (H124)

What they do

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.

Before you give

Should I give to this charity?

Easy charity check

Look at where the money went

Of every $100 spent, about $81.80 was reported for mission work. Use the spending picture below and ask what results that work produced.

Plain answer: A tax form cannot prove that a charity is doing good. It can show how the charity says it spent its money—and point out questions you should ask.

Basic facts we verified

IRS warning checkNo IRS revocation warning appears in this data.

Money report from 2024The charity has a recent tax report to read.

They explain their jobThe charity tells us what it is trying to do.

They name their leaders29 people are listed in the latest report.

You can reach themThey list contact information, so you can ask questions.

Money made simple

65.61%of revenue went to mission work81.8% of expenses · Program services

11.33%of revenue went to fundraising14.1% of expenses

$80.16spent for every $100 of revenueRevenue covered expenses this year.

3.22%of revenue went to management and office costs4.0% of expenses

$5.20in assets for every $1 spent this yearSome assets cannot be spent right away.

85.6%of its money came from giftsOther money may come from services or investments.

Ask these three easy questions

Who did you help? Ask for a recent story or report that shows real results.
What will my money do? Ask exactly what your gift will pay for.
Is this really the charity? Give only through its official website or confirmed phone number.

Pay context: The highest compensation shown in this filing is $350,014 for SUSAN L-J DICKINSON (CHIEF EXECUTIVE OFFICER). Compare pay with organizations of similar size and complexity.

Bottom line: Do not decide from a name, mission statement, or tax status alone. Look at where the money went, then ask what changed, who was helped, and what your gift will do. YouCanGiveBack does not endorse or grade organizations.

Money

Financial picture

Tax year 2024

A plain-language look at the latest Form 990 figures available. These numbers help you ask better questions; they do not, by themselves, rate whether a charity is good or bad.

$100revenue

How each $100 of revenue was used

The large number compares each expense with revenue. The smaller number shows its share of total expenses.

Total reported revenue$14,420,554

Mission workProgram services$9,461,27365.61% of revenue81.8% of expenses

ManagementOffice and general costs$464,9673.22% of revenue4.0% of expenses

FundraisingAsking for donations$1,633,55511.33% of revenue14.1% of expenses

Revenue left after expensesReported annual surplus$2,860,75919.84% of revenueShown in gray on the chart

Total expenses$11,559,79580.16% of revenue

Gray means reported revenue left after expenses for this filing year. It does not necessarily mean cash sitting in a bank account.

Has the pattern changed?

Colored bars = expense mix: how each year’s expenses were divided. Total expenses vs. revenue shows whether the charity spent less or more than it received. The current filing is first.

YearExpense mixDetails

2024CurrentExpense mix: 81.8% mission · 4.0% management · 14.1% fundraisingTotal expenses: 80.16% of revenue

2023Expense mix: 86.1% mission · 4.7% management · 9.3% fundraisingTotal expenses: 87.73% of revenue

2022Expense mix: 81.1% mission · 7.3% management · 11.6% fundraisingTotal expenses: 113.19% of revenue

2021Expense mix: 81.7% mission · 6.8% management · 11.5% fundraisingTotal expenses: 71.12% of revenue

2020Expense mix: 84.0% mission · 5.2% management · 10.8% fundraisingTotal expenses: 26.69% of revenue

2019Expense mix: 80.5% mission · 8.9% management · 10.6% fundraisingTotal expenses: 81.69% of revenue

2018Expense mix: 84.4% mission · 7.0% management · 8.6% fundraisingTotal expenses: 76.37% of revenue

2017Expense mix: 79.4% mission · 9.1% management · 11.5% fundraisingTotal expenses: 31.15% of revenue

Money in and money out

Revenue$14,420,554

Expenses$11,559,795

Annual surplus $2,860,759 Revenue was higher than expenses for this filing year.

Reported spending amounts

Mission work means the Form 990 category called program services. These are reported accounting categories—not an independent measurement of results.

Mission work (program services)$9,461,273 · 81.8% of expenses

Management and office costs$464,967 · 4.0% of expenses

Fundraising$1,633,555 · 14.1% of expenses

See all reported dollar amounts

Revenue$14,420,554

Expenses$11,559,795

Assets$60,143,025

Income$24,754,249

Contributions$12,345,385

Mission work (program services)$9,461,273

Fundraising$1,633,555

Grants given$20,762,290

Average grant$280,571

Management and general$464,967

Stocks and bonds$40,186,544

Accounting fees$23,878

People

Leadership and board

Tax year 2024

Names, titles, time, and compensation below are reported by the organization on its Form 990.

People reported as paid

Person and titleCompensation

SUSAN L-J DICKINSONCHIEF EXECUTIVE OFFICER · 36 hrs/week $350,014Base $320,026 · Other $29,988

MITCH APPLESONCHIEF OPERATING OFFICER · 38 hrs/week $283,585Base $255,015 · Other $28,570

PENNY DACKSSR DIRECTOR OF SCIENTIFIC INITIATIVES · 30 hrs/week $244,063Base $226,491 · Other $17,572

SHARON DENNYSR DIRECTOR OF PROGRAMS · 40 hrs/week $200,290Base $174,174 · Other $26,116

PHILLIP JOHN WEICHELSR DIRECTOR OF ADVANCEMENT · 40 hrs/week $200,203Base $157,933 · Other $42,270

PETER WITZLEBDIRECTOR OF IT · 40 hrs/week $174,899Base $168,866 · Other $6,033

SHANA DODGEDIRECTOR OF RESEARCH ENGAGEMENT · 40 hrs/week $167,945Base $152,910 · Other $15,035

Compensation alone does not tell whether pay is reasonable. Consider the charity’s size, work, location, and results.

See everyone listed on the board or leadership roster (29)

SUSAN L-J DICKINSONCHIEF EXECUTIVE OFFICER

MITCH APPLESONCHIEF OPERATING OFFICER

PENNY DACKSSR DIRECTOR OF SCIENTIFIC INITIATIVES

SHARON DENNYSR DIRECTOR OF PROGRAMS

PHILLIP JOHN WEICHELSR DIRECTOR OF ADVANCEMENT

PETER WITZLEBDIRECTOR OF IT

SHANA DODGEDIRECTOR OF RESEARCH ENGAGEMENT

KRISTIN HOLLOWAYDIRECTOR

VALERIE SNOWSECRETARY

SHOSHANA KRILOWDIRECTOR

RITA CHOULACHAIR

MARG SUTHERLANDDIRECTOR

LENN MARQUEZDIRECTOR (EFF 5/3/25)

KYLE BIRMINGHAMDIRECTOR

KRISTIN SCHNEEMANDIRECTOR

ABRAR TANVEERDIRECTOR

KIM TORRESDIRECTOR

KATHY MELEDIRECTOR

JULIE KELLYTREASURER

JOSEPH MARQUEZDIRECTOR

JOE ESPOSITODIRECTOR (EFF 5/3/25)

JILL GOLDMANDIRECTOR

JARY LARSENDIRECTOR (THRU 5/4/25)

HELEN-ANN COMSTOCKDIRECTOR

HALIMA AMJADDIRECTOR

GIRISH PATANGAYDIRECTOR (EFF 5/3/25)

GAIL ANDERSONVICE CHAIR

DON NEWHOUSEDIRECTOR

DAVID PFEIFERDIRECTOR (EFF 5/3/25)

About this charity

Recognized since: January 2004
Location: 2700 HORIZON DRIVE 120, KING OF PRUSSIA, PA 19406
County: Montgomery
In care of: SUSAN L-J DICKINSON
Primary officer: SUSAN L-J DICKINSON, CHIEF EXECUTIVE OFFICER

How to reach them

WebsiteVisit the charity’s website Emailnewsroom@theaftd.org Phone(267) 514-7221

Filing and classification

Latest tax year: 2024
Tax period began: July 1, 2024
Return type: 990
Tax preparer: EISNER ADVISORY GROUP LLC
NTEE classification: Medical Research (H124)
Grant-giving organization: Yes