Civic Intelligence

The Association for Frontotemporal

EIN 41-2073220 • 501(c)3 • King Of Prussia, PA

Profile

Promote and fund research into finding the cause, therapies, and cures for frontotemporal degeneration (ftd);provide information, education, support and advocacy to persons diagnosed with ftd, their families and caregivers;educate physicians and allied 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 and promote public and private programs that provide appropriate, affordable and high-quality long-term health care and social services.

2700 Horizon Drive 120King Of Prussia, PA 19406

www.theaftd.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

25th percentile

0.05x

Higher debt load relative to assets than 25% of similar nonprofits.

501(c)3 • $50M-$100M nonprofits • Source year 2025

Liabilities / Revenue

39th percentile

0.22x

Higher debt load relative to revenue than 39% of similar nonprofits.

501(c)3 • $50M-$100M nonprofits • Source year 2025

Net Margin

76th percentile

20%

Higher net margin than 76% of similar nonprofits.

501(c)3 • $50M-$100M nonprofits • Source year 2025

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

68th percentile

11%

Faster asset growth than 68% of similar nonprofits.

501(c)3 • $50M-$100M nonprofits • Annualized from 2024 to 2025

Revenue Growth

57th percentile

9.8%

Faster revenue growth than 57% of similar nonprofits.

501(c)3 • $50M-$100M nonprofits • Annualized from 2024 to 2025

Balance Sheet
Liabilities / Assets25th percentile

Assets

Up

$60,143,025

Up $6,171,352 (+11%) from 2024

Liabilities

Down

$3,243,046

Down $147,484 (-4.3%) from 2024

Net Assets

Up

$56,899,979

Up $6,318,836 (+12%) from 2024

Operations
Liabilities / Revenue39th percentileNet Margin76th percentile

Revenue

Up

$14,420,554

Up $1,281,434 (+9.8%) from 2024

Expenses

Up

$11,559,795

Up $32,856 (+0.3%) from 2024

Net Income

Up

$2,860,759

Up $1,248,578 (+77%) from 2024

Trend Graphs

Balance Sheet Trend

Asset Growth68th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$80M$60M$40M$20M$0Assets 2011: $1,232,413Liabilities 2011: $105,259Net Assets 2011: $1,127,1542011Assets 2012: $1,190,461Liabilities 2012: $82,089Net Assets 2012: $1,108,3722012Assets 2013: $1,238,370Liabilities 2013: $60,745Net Assets 2013: $1,177,6252013Assets 2014: $2,513,073Liabilities 2014: $14,557Net Assets 2014: $2,498,5162014Assets 2015: $3,039,423Liabilities 2015: $317,925Net Assets 2015: $2,721,4982015Assets 2016: $8,752,417Liabilities 2016: $434,468Net Assets 2016: $8,317,9492016Assets 2017: $8,259,790Liabilities 2017: $1,303,075Net Assets 2017: $6,956,7152017Assets 2018: $17,543,745Liabilities 2018: $744,795Net Assets 2018: $16,798,9502018Assets 2019: $21,156,373Liabilities 2019: $2,033,467Net Assets 2019: $19,122,9062019Assets 2020: $23,888,583Liabilities 2020: $2,961,736Net Assets 2020: $20,926,8472020Assets 2021: $44,786,288Liabilities 2021: $1,900,846Net Assets 2021: $42,885,4422021Assets 2022: $44,796,969Liabilities 2022: $2,227,394Net Assets 2022: $42,569,5752022Assets 2023: $47,470,345Liabilities 2023: $2,415,381Net Assets 2023: $45,054,9642023Assets 2024: $53,971,673Liabilities 2024: $3,390,530Net Assets 2024: $50,581,1432024Assets 2025: $60,143,025Liabilities 2025: $3,243,046Net Assets 2025: $56,899,9792025

Highlighted filing

2025

Assets$60,143,025
Liabilities$3,243,046
Net Assets$56,899,979
Open 2025 Filing

Operations Trend

Revenue Growth57th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$30M$20M$10M$0-$10MExpenses 2011: $959,8822011Revenue 2012: $460,001Expenses 2012: $478,783Net Income 2012: -$18,7822012Expenses 2013: $1,161,9572013Revenue 2014: $2,676,635Expenses 2014: $1,355,744Net Income 2014: $1,320,8912014Revenue 2015: $2,187,801Expenses 2015: $1,960,231Net Income 2015: $227,5702015Revenue 2016: $8,183,534Expenses 2016: $2,671,249Net Income 2016: $5,512,2852016Revenue 2017: $4,332,980Expenses 2017: $5,665,227Net Income 2017: -$1,332,2472017Revenue 2018: $14,801,999Expenses 2018: $4,610,207Net Income 2018: $10,191,7922018Revenue 2019: $9,141,943Expenses 2019: $6,981,834Net Income 2019: $2,160,1092019Revenue 2020: $9,455,114Expenses 2020: $7,723,528Net Income 2020: $1,731,5862020Revenue 2021: $28,527,291Expenses 2021: $7,615,096Net Income 2021: $20,912,1952021Revenue 2022: $12,057,958Expenses 2022: $8,575,867Net Income 2022: $3,482,0912022Revenue 2023: $8,537,416Expenses 2023: $9,663,807Net Income 2023: -$1,126,3912023Revenue 2024: $13,139,120Expenses 2024: $11,526,939Net Income 2024: $1,612,1812024Revenue 2025: $14,420,554Expenses 2025: $11,559,795Net Income 2025: $2,860,7592025

Highlighted filing

2025

Revenue$14,420,554
Expenses$11,559,795
Net Income$2,860,759
Open 2025 Filing

Filings

Most recent year

2025 • Form 990XML pending. An XML filing is linked for this year, but detailed extraction is still pending.

Open filing
Assets
$60,143,025
Liabilities
$3,243,046
Net assets
$56,899,979
Revenue
$14,420,554
Expenses
$11,559,795
Net income
$2,860,759
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$60.1$3.24$56.9$14.4$11.6$2.86
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$54.0$3.39$50.6$13.1$11.5$1.61
2023Facts available. Structured filing facts are available, but richer extracted sections are limited.$47.5$2.42$45.1$8.54$9.66$1.13
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$44.8$2.23$42.6$12.1$8.58$3.48
2021Facts available. Structured filing facts are available, but richer extracted sections are limited.$44.8$1.90$42.9$28.5$7.62$20.9
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$23.9$2.96$20.9$9.46$7.72$1.73
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$21.2$2.03$19.1$9.14$6.98$2.16
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$17.5$0.74$16.8$14.8$4.61$10.2
2017XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$8.26$1.30$6.96$4.33$5.67$1.33
2016Detailed filing. Detailed filing data is available for this year.$8.75$0.43$8.32$8.18$2.67$5.51
2015Detailed filing. Detailed filing data is available for this year.$3.04$0.32$2.72$2.19$1.96$0.23
2014Detailed filing. Detailed filing data is available for this year.$2.51$0.01$2.50$2.68$1.36$1.32
2013Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.24$0.06$1.18$1.16
2012Summary only. Only limited summary data is available for this year.$1.19$0.08$1.11$0.46$0.48$0.02
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.23$0.11$1.13$0.96
Latest Detailed Filing

The latest 2025 filing currently has linked XML that has not been fully parsed yet. Showing the latest detailed filing from 2023 below.

Jump To
Filing Snapshot
Filing Period
Jul 1, 2022 to Jun 30, 2023
Signed
Nov 7, 2023
Return Version
2022v5.0
Gross Receipts
$31,899,442
Mission and Program Overview

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; educate physicians and allied 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 and promote public and private programs that provide appropriate, affordable and high-quality long-term health care and social services.

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; 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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$25,706,579$34,826,459▲ $9,119,880
Savings and Temporary Cash Investments$7,291,224$6,186,229▼ $1,104,995
Pledges and Grants Receivable$7,865,457$5,345,553▼ $2,519,904
Investments Other Securities$3,667,623--
Cash and Non-Interest-Bearing Accounts$101,450$288,666▲ $187,216
Prepaid Expenses and Deferred Charges$90,160$148,697▲ $58,537
Land, Buildings, and Equipment, Net$46,430$33,661▼ $12,769
Accounts Receivable$1,983$16,691▲ $14,708
Total Assets$44,796,969$47,470,345▲ $2,673,376
Other Assets Total$26,063$624,389▲ $598,326
Liabilities
Grants Payable$1,795,659$1,052,178▼ $743,481
Other Liabilities$77,040$667,827▲ $590,787
Accounts Payable and Accrued Expenses$324,157$496,632▲ $172,475
Deferred Revenue$30,538$198,744▲ $168,206
Total Liabilities$2,227,394$2,415,381▲ $187,987
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$34,518,938$36,911,305▲ $2,392,367
Net Assets With Donor Restrictions$8,050,637$8,143,659▲ $93,022
Total Net Assets Fund Balance$42,569,575$45,054,964▲ $2,485,389
Total Liabilities and Net Assets / Fund Balance$44,796,969$47,470,345▲ $2,673,376

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$33,661$43,130$76,791
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseOtherTotal
Susan L-j DickinsonChief Executive OfficerFT$302,593$27,742$330,335
Penny DacksSr. Director of Scientific InitiativesPT$207,678$15,798$223,476
Penny DacksSr. Director of Scientific Initiativ-$207,564$15,912$223,476
Christine Rogers StevensDirector of FinanceFT$180,112$26,786$206,898
Mitch ApplesonChief Operating OfficerFT$168,973$12,168$181,141
Benjamin FreemanDirector of Development & CommunicationsFT$167,705$6,250$173,955
Sharon DennySr. Director of ProgramsFT$153,827$10,500$164,327
Shana DodgeDirector of Research EngagementFT$145,410$14,126$159,536

Board Members and Trustees

NameTitle
Kim TorresChair
Rita ChoulaVice Chair
Don NewhouseDirector
Halima AmjadDirector
Helen-ann ComstockDirector
Jary LarsenDirector
Joseph MarquezDirector
Kathy MeleDirector
Kristin HollowayDirector
Kristin SchneemanDirector
Sandra GrowDirector
Abrar TanveerDirector (effective May 2023)
Julie KellyDirector (effective May 2023)
Marg SutherlandDirector (effective May 2023)
Shoshana KrilowDirector (effective May 2023)
Brian RoseDirector (thru May 2023)
Danny HedayaDirector (thru May 2023)
Kacy KuneshDirector (thru May 2023)
Michael StowellDirector (thru May 2023)
David PfeiferDirector (treasurer Eff August 2023)
Gail AndersonSecretary
Christian BarrowTreasurer (thru August 2023)

Highest Paid Contractors

ContractorServicesLocationCompensation
CorezVenue1356 BROADWAY, New York, NY 10018$148,383
PreconAv For Annual Education Conference11910 PARKLAWN DRIVE, Rockville, MD 20852$144,794
Revenue and Support

Revenue Composition

Contributions and Grants
$8,797,440
Program Service Revenue
$2,051
Investment Income
$-35,633
Other Revenue
$-226,442
All Other Contributions
$6,969,153
Change in Net Assets
$-1,126,391

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded10$161,062Hi/low Date of Gift
Total Noncash Contributions10$161,062-

Audited Revenue Reconciliation

Revenue per Audited Statements
$8,573,049
Revenue Not Reported on Financial Statements
$-35,633
Revenue Not Reported on Form 990
$308,904
Other Revenue Adjustments
$-35,633
Total Revenue per Audited Statements
$8,881,953
Total Revenue per Form 990
$8,537,416
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$4,778,288
Grants and Similar Amounts Paid$2,475,799
Other Expenses$2,339,720
Total Fundraising Expense$1,123,275
Professional Fundraising Fees$70,000

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$2,666,162$143,369$639,191$3,448,722
Grants to Domestic Orgs$1,821,218--$1,821,218
Information Technology$464,239$90,059$98,410$652,708
Current Officers, Directors, Trustees, and Key Employees$319,623$133,507$133,507$586,637
Conferences and Meetings$526,796$45,962-$572,758
Grants to Domestic Individuals$417,054--$417,054
Other Employee Benefits$276,302$5,791$68,399$350,492
Payroll Taxes$224,123$20,268$57,933$302,324
Foreign Grants$237,527--$237,527
Fees for Services Other$109,286$90,850$34,570$234,706
Occupancy$158,434$35,630$33,950$228,014
Advertising$177,819--$177,819
Pension Plan Contributions$70,063$3,439$16,611$90,113
Travel$77,875$1,772$7,074$86,721
Fees for Services Professional Fundraising--$70,000$70,000
Fees for Services Accounting-$47,648-$47,648
Other Expenses$37,132$5,868$3,695$46,695
Office Expenses$8,418$22,500$1,048$31,966
Insurance$20,194$5,657$4,327$30,178
Depreciation Depletion$7,661$2,554$2,554$12,769
All Other Expenses$27,101$44,188$-218,698$-147,409
Total Functional Expenses$7,834,399$706,133$1,123,275$9,663,807

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$9,972,711
Expenses per Audited Statements$9,663,807
Total Expenses per Form 990$9,663,807
Expenses Not Reported on Form 990$308,904
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
ALZHEIMER'S DRUG DISCOVERY FOUNDATIONNew York, NY501(c)(3)Drug Discovery, Treat Ftd Initiative$700,000
Bluefield Project to Cure FtdSan Franscisco, CA501(c)(3)Genfi Research Center Support$290,000
Baylor College of MedicineDallas, TX501(c)(3)Pilot Grant - Steven Boeynaems$110,000
UcsfSan Franscisco, CA501(c)(3)Pilot Grant - Daniel Mordes$110,000
University of MichiganAnn Arbor, MI501(c)(3)Pilot Grant - Alexandru Iordan$109,784
American Brain FoundationMinneapolis, MN501(c)(3)Clinical Research Training Scholarship in Ftd$100,000
The Tank LtdNew York, NY501(c)(3)Unravelled$95,023

International Summary

Offices
0
Employees
0
Spending
$0

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
Yes

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$418,667
Fundraising Gross Income$153,797
Professional Fundraising Fees$70,000

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Hope Rising$1,849,730$117,705$123,143$-5,438
Driving Hope Ny$103,455$31,039$3,551$27,488
Total Events$1,982,084$153,797$418,667$-264,870
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Operating Lease Liability$667,827
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
Yes
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 2

“Directors don newhouse and kathy mele have a family relationship.”

Form 990, Part VI, Section B, Line 11B

“The complete 990 will be reviewed and approved by aftd's audit committee and provided to the full board prior to submission.”

Form 990, Part VI, Section B, Line 12C

“All board members and ceo sign the conflict of interest form every year. If an issue were to arise it would be addressed by the executive committee and the board member/ceo in question.”

Form 990, Part VI, Section B, Line 15

“The performance review of aftd's ceo was based on the past fiscal year results. It includes input that the board chair and vice chair obtained from aftd board members, aftd staff and major donors. The performance review was written by the chair with input from the vice chair. Based on performance review and fiscal year results, the chair recommended a salary range and proposed increase which was put forward to the executive committee for discussion and alignment. The final compensation was then approved by the board. The salary range and annual increase was determined after reviewing salary comparability data for non profits of similar size nationally and in the greater philadelphia area adjusted for cost of living increases. A comparability study was performed during fy22 and aftd used 3 surveys for benchmarks for all staff at aftd. In addition, aftd documents all salary recommendations.”

Form 990, Part VI, Section C, Line 19

“All governing documents are available upon request from the office.”

Filing and Contact Details

Filer

Filer Name
The Association for Frontotemporal
EIN
41-2073220
Phone
2675147221
Address
2700 HORIZON DRIVE 120, KING OF PRUSSIA, PA 19406

Signing Officer

Name
Susan L-j Dickinson
Title
Chief Executive Officer
Phone
2675147221
Signed
2023-11-07
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Susan L-j Dickinson
Formed
2002
Legal Domicile
Pa
Voting Board Members
18
Independent Board Members
18
Employees
47
Volunteers
362

Preparer

Firm
Eisner Advisory Group LLC
Address
130 NORTH 18TH STREET SUITE 3000, PHILADELPHIA, PA 19103-2757
Preparer
Helen M Martin
Phone
2158818800
Supplemental Narrative

Additional Explanations

Form 990, Part XII, Line 2C

“The audit committee assumes responsibility for the oversight of the audit of its financial statements and selection of the independent accountant. This process has not changed from the prior year.”

Financial Statement Notes

PART X, LINE 2:

“The internal revenue service has classified the organization as exempt from federal income taxes under section 501(c)(3) of the internal revenue code. Accounting for uncertainty in income taxes clarifies the accounting for uncertainty in income taxes recognized in an enterprise's financial statements. Management has analyzed the tax positions taken by the organization, and has concluded that as of june 30, 2023 and 2022, there are no uncertain tax positions taken or expected to be taken that would require recognition of a liability or disclosure in the consolidated financial statements. The organization recognizes accrued interest and penalties associated with uncertain tax positions, if any. There were no income tax related interest or penalties recorded for either of the years ended june 30, 2023 or 2022.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Additional special events expenses 239,860.”

PART XI, LINE 4B - OTHER ADJUSTMENTS:

“Investment income net of realized losses -35,633.”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Additional special events costs 239,860.”

PART XII, LINE 4B - OTHER ADJUSTMENTS:

“Grants returned netted against expense on financial statements”

Raw XML AppendixShowing 400 of 1,101 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
IRS990/AccountantCompileOrReviewInd00
IRS990/AccountsPayableAccrExpnssGrp/BOYAmt0324157
IRS990/AccountsPayableAccrExpnssGrp/EOYAmt0496632
IRS990/AccountsReceivableGrp/BOYAmt01983
IRS990/AccountsReceivableGrp/EOYAmt016691
IRS990/ActivitiesConductedPrtshpInd00
IRS990/ActivityOrMissionDesc0PROMOTE 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; 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.
IRS990/AdvertisingGrp/ProgramServicesAmt0177819
IRS990/AdvertisingGrp/TotalAmt0177819
IRS990/AllOtherContributionsAmt06969153
IRS990/AllOtherExpensesGrp/FundraisingAmt0-218698
IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt044188
IRS990/AllOtherExpensesGrp/ProgramServicesAmt027101
IRS990/AllOtherExpensesGrp/TotalAmt0-147409
IRS990/AnnualDisclosureCoveredPrsnInd01
IRS990/AuditCommitteeInd01
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IRS990/BooksInCareOfDetail/PhoneNum02675147221
IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt02700 HORIZON DRIVE STE 120
IRS990/BooksInCareOfDetail/USAddress/CityNm0KING OF PRUSSIA
IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd0PA
IRS990/BooksInCareOfDetail/USAddress/ZIPCd019406
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IRS990/ChangeToOrgDocumentsInd00
IRS990/CntrctRcvdGreaterThan100KCnt02
IRS990/CollectionsOfArtInd00
IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt0133507
IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt0133507
IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt0319623
IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt0586637
IRS990/CompensationFromOtherSrcsInd00
IRS990/CompensationProcessCEOInd01
IRS990/CompensationProcessOtherInd01
IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt045962
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IRS990/ConferencesMeetingsGrp/TotalAmt0572758
IRS990/ConflictOfInterestPolicyInd01
IRS990/ConservationEasementsInd00
IRS990/ConsolidatedAuditFinclStmtInd01
IRS990/ContractorCompensationGrp/CompensationAmt0148383
IRS990/ContractorCompensationGrp/CompensationAmt1144794
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt01356 BROADWAY
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt111910 PARKLAWN DRIVE
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm0NEW YORK
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm1ROCKVILLE
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd0NY
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd1MD
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd010018
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd120852
IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt0COREZ
IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt1PRECON
IRS990/ContractorCompensationGrp/ServicesDesc0VENUE
IRS990/ContractorCompensationGrp/ServicesDesc1AV FOR ANNUAL EDUCATION CONFERENCE
IRS990/ContriRptFundraisingEventAmt01828287
IRS990/CreditCounselingInd00
IRS990/CYBenefitsPaidToMembersAmt00
IRS990/CYContributionsGrantsAmt08797440
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IRS990/Desc0RESEARCH - 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.
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IRS990/Form990PartVIISectionAGrp/TitleTxt24SR. DIRECTOR OF SCIENTIFIC INITIATIVES
IRS990/Form990PartVIISectionAGrp/TitleTxt25DIRECTOR OF FINANCE
IRS990/Form990PartVIISectionAGrp/TitleTxt26DIR OF DEVELOPMENT & COMMUNICATIONS
IRS990/Form990PartVIISectionAGrp/TitleTxt27SR. DIRECTOR OF PROGRAMS
IRS990/Form990PartVIISectionAGrp/TitleTxt28DIRECTOR OF RESEARCH ENGAGEMENT
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IRS990/MissionDesc0PROMOTE 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; 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 AND PROMOTE PUBLIC AND PRIVATE PROGRAMS THAT PROVIDE APPROPRIATE, AFFORDABLE AND HIGH-QUALITY LONG-TERM HEALTH CARE AND SOCIAL SERVICES.
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