THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION: Form 990, tax year 2016

View the entire original 990 at ProPublica ↗

Organization
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION (EIN 41-2073220)
Tax period
2016-07-01 to 2017-06-30
Filed
2017-10-04
IRS object ID
201712779349301701
Schema version
2016v3.0
Source
Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2017-10-04T15:32:41-05:00ReturnTs
Tax Period End2017-06-30TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN231518888PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1MAILLIE LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line1624 WILLOWBROOK LANEAddressLine1Txt
CityWEST CHESTERCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19382ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2016-07-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN412073220EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE ASSOCIATION FOR FRONTOTEMPORALBusinessNameLine1Txt
Business Name Line2DEGENERATIONBusinessNameLine2Txt
FieldValueIRS element (for citing)
Business Name ControlASSOBusinessNameControlTxt
Phone2675147221PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1290 KING OF PRUSSIA RD NO 320AddressLine1Txt
CityRADNORCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19087ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonPAUL LESTERPersonNm
Person TitleTREASURERPersonTitleTxt
Phone2675147221PhoneNum
Signature2017-09-15SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonEDWARD FRONCZKOWSKI CPAPreparerPersonNm
PTINP01259092PTIN
Phone6106964353PhoneNum

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address96.227.130.2IPv4AddressTxt
FieldValueIRS element (for citing)
IP2017-09-15IPDt
IP Tm12:36:54IPTm
IP TimezoneEDIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device IdBD5841FEA2E54BA7AF00302E734F02DECBD4A071AtSubmissionCreationDeviceId
At Submission Filing Device IdBD5841FEA2E54BA7AF00302E734F02DECBD4A071AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2016TaxYr
Build TS2021-01-29 14:40:06ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerPAUL LESTERPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1290 KING OF PRUSSIA RD NO 320AddressLine1Txt
CityRADNORCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19087ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$4,479,225GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.THEAFTD.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2002FormationYr
Legal Domicile StatePALegalDomicileStateCd
Activity Or MissionPROMOTE 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 TO PROMOTE PUBLIC AND PRIVATE PROGRAMS THAT PROVIDE APPROPRIATE, AFFORDABLE AND HIGH-QUALITY, LONG-TERM HEALTH CARE AND SOCIAL SERVICES.ActivityOrMissionDesc
Voting Members Governing Body16VotingMembersGoverningBodyCnt
Voting Members Independent16VotingMembersIndependentCnt
Total Employee16TotalEmployeeCnt
Total Volunteers228TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$8,057,371PYContributionsGrantsAmt
CY Contributions Grants$4,190,242CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$2,402PYInvestmentIncomeAmt
CY Investment Income$2,732CYInvestmentIncomeAmt
PY Other Revenue$123,761PYOtherRevenueAmt
CY Other Revenue$140,006CYOtherRevenueAmt
PY Total Revenue$8,183,534PYTotalRevenueAmt
CY Total Revenue$4,332,980CYTotalRevenueAmt
PY Grants And Similar Paid$897,107PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$3,126,788CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,155,342PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,435,683CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$51,576CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$546,518CYTotalFundraisingExpenseAmt
PY Other Expenses$618,800PYOtherExpensesAmt
CY Other Expenses$1,051,180CYOtherExpensesAmt
PY Total Expenses$2,671,249PYTotalExpensesAmt
CY Total Expenses$5,665,227CYTotalExpensesAmt
PY Revenues Less Expenses$5,512,285PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$1,332,247CYRevenuesLessExpensesAmt
Total Assets BOY$8,752,417TotalAssetsBOYAmt
Total Assets EOY$8,259,790TotalAssetsEOYAmt
Total Liabilities BOY$434,468TotalLiabilitiesBOYAmt
Total Liabilities EOY$1,303,075TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$8,317,949NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,956,715NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionPROMOTE 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.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$3,571,338ExpenseAmt
Grant$3,039,139GrantAmt
DescRESEARCHEACH YEAR AFTD INVESTS IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSIS AND THE FIRST THERAPEUTICS FOR FTD. AFTD AWARDED $2 MILLION IN GRANTS THROUGH THE FTD BIOMARKERS INITIATIVE, A FIVE-YEAR PROGRAM TO STIMULATE RESEARCH INTO QUANTIFIABLE, PHYSICAL SIGNS OF FTD'S DEVELOPMENT. WE AWARDED TWO PILOT GRANTS, TWO DRUG-DISCOVERY GRANTS AND TWO POSTDOCTORAL FELLOWSHIPS. AFTD LAUNCHED THE FTD DISORDERS REGISTRY, WHICH SURPASSED A MULTI-YEAR REGISTRANT GOAL IN JUST THREE MONTHS.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$493,322ExpenseAmt
Grant$87,649GrantAmt
DescSUPPORTAFTD 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 2,451 HELPLINE CALLS AND EMAILS. WE EXPANDED OUR NETWORK OF AFFILIATED SUPPORT GROUPS; AS OF JUNE 30, 2017, THERE ARE 71 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING GROUPS IN 27 DIFFERENT STATES. AFTD AWARDED 180 COMSTOCK TRAVEL AND RESPITE GRANTS TO FTD CAREGIVERS AND PERSONS DIAGNOSED.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$818,330ExpenseAmt
DescEDUCATION, AWARENESS AND INFORMATIONAFTD 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 PUBLISHED THREE NEW ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES. WE PRODUCED THREE EXPERT-LED WEBINARS THROUGH A NEWLY LAUNCHED SERIES. FINALLY, AFTD DREW MORE THAN 320 PEOPLE TO THE ANNUAL AFTD EDUCATION CONFERENCE, THE HIGHEST ATTENDANCE FIGURE TO DATE.AWARENESSAWARENESS IS THE KEY TO ACHIEVING OUR MISSION. OUR GOAL OF A WORLD WITHOUT FTD CANNOT BECOME REALITY UNTIL OUR NEIGHBORS, PHYSICIANS, PROFESSIONAL CAREGIVERS, POLITICAL REPRESENTATIVES AND NEWS REPORTERS ALL UNDERSTAND THIS ESPECIALLY CRUEL FORM OF NEURODEGENERATION AND WHAT IT STEALS FROM OUR LOVED ONES. AFTD HELPED TO SPREAD FTD AWARENESS AROUND THE GLOBE WITH THE SECOND ANNUAL WORLD FTD AWARENESS WEEK, WHICH INCLUDED A TODAY SHOW SEGMENT ON FTD. WITH DONOR SUPPORT, FTD AWARENESS ADS RAN IN TWO SUNDAY ISSUES OF THE NEW YORK TIMES. WITH HELP FROM DISCOVERY COMMUNICATIONS, AN AFTD PSA REACHED MORE THAN 100 MILLION VIEWERS BY AIRING ON DISCOVERY'S NETWORKS.ADVOCACY 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 REPRESENTED OUR COMMUNITY AT EVERY QUARTERLY MEETING OF THE NATIONAL ALZHEIMER'S PROJECT ACT (NAPA) COUNCIL IN WASHINGTON. WE VISITED SEVERAL CONGRESSIONAL OFFICES IN MAY TO PROVIDE BACKGROUND ON THE NEED FOR A GREATER FEDERAL FOCUS ON FTD.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$4,882,990TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Temp Or Permanent Endowments0TempOrPermanentEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional FundraisingYes (1)ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To IndividualsYes (1)GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With Officer Ent0BusinessRlnWithOfficerEntInd
Deductible Non Cash ContriYes (1)DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related EntityYes (1)RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document18IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee16EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo ContributionsYes (1)QuidProQuoContributionsInd
Quid Pro Quo Contri DisclYes (1)QuidProQuoContriDisclInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members16GoverningBodyVotingMembersCnt
Independent Voting Member16IndependentVotingMemberCnt
Family Or Business RlnYes (1)FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process Other0CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAZStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldDCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNDStatesWhereCopyOfReturnIsFldCd
Other WebsiteYes (X)OtherWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE ORGANIZATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone2675147221PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1290 KING OF PRUSSIA RD BLDG 2 SITEAddressLine1Txt
CityRADNORCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19087ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (19 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
BONNIE SHEPHERD
SECRETARY/VICE CHAIR6.00Yes (X)Yes (X)$0$0$0
HELEN-ANN COMSTOCK
DIRECTOR2.00Yes (X)$0$0$0
DEANNA ANGELLO MBA
DIRECTOR2.00Yes (X)$0$0$0
JOHN WHITMARSH PHD
DIRECTOR4.00Yes (X)$0$0$0
GAIL ANDERSEN
CHAIR10.00Yes (X)Yes (X)$0$0$0
STEVE BELLWOAR
DIRECTOR2.00Yes (X)$0$0$0
PAUL LESTER
TREASURER4.00Yes (X)Yes (X)$0$0$0
KATHY MELE
DIRECTOR4.00Yes (X)$0$0$0
STEVE FENOGLIO
DIRECTOR/SECRETARY4.00Yes (X)Yes (X)$0$0$0
RICK CHILDS
DIRECTOR2.00Yes (X)$0$0$0
MATT HATFIELD
DIRECTOR2.00Yes (X)$0$0$0
BETH WALTER
DIRECTOR4.00Yes (X)$0$0$0
DANIEL HEDAYA
DIRECTOR2.00Yes (X)$0$0$0
KACY KUNESH
DIRECTOR2.00Yes (X)$0$0$0
BRIAN ROSE
DIRECTOR2.00Yes (X)$0$0$0
MICHAEL STOWELL PHD
DIRECTOR2.00Yes (X)$0$0$0
SUSAN DICKINSON
CHIEF EXECUTIVE OFFICER40.00Yes (X)$142,500$0$13,250
BENJAMIN FREEMAN
DEVELOPMENT & COMMUNICATIONS DIRECTOR40.00$116,304$0$4,517Yes (X)
NADINE TATTON
SCIENTIFIC DIRECTOR40.00$138,500$0$15,571Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$397,304TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$33,338TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K3IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$1,812,677FundraisingAmt
All Other Contributions$2,377,565AllOtherContributionsAmt
Noncash Contributions$51,258NoncashContributionsAmt
Total Contributions$4,190,242TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,783TotalRevenueColumnAmt
Exclusion$2,783ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$51,258SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$51,309SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$51SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$51TotalRevenueColumnAmt
Related Or Exempt Func Income-$51RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$80,600FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$1,812,677ContriRptFundraisingEventAmt
Fundraising Direct Expenses$94,936FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$14,336TotalRevenueColumnAmt
Exclusion-$14,336ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
CONTRACT541700$139,332$139,332
BOOKS & DVD SALES900099$15,010$15,010
FieldValueIRS element (for citing)
Other Revenue Total$154,342OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$4,332,980TotalRevenueColumnAmt
Related Or Exempt Func Income$154,291RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion-$11,553ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$2,230,453TotalAmt
Program Services$2,230,453ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$87,649TotalAmt
Program Services$87,649ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$808,686TotalAmt
Program Services$808,686ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$170,720TotalAmt
Program Services$102,432ProgramServicesAmt
Management And General$34,144ManagementAndGeneralAmt
Fundraising$34,144FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,070,078TotalAmt
Program Services$833,591ProgramServicesAmt
Management And General$61,968ManagementAndGeneralAmt
Fundraising$174,519FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$92,340TotalAmt
Program Services$74,048ProgramServicesAmt
Management And General$3,611ManagementAndGeneralAmt
Fundraising$14,681FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$102,545TotalAmt
Program Services$80,738ProgramServicesAmt
Management And General$5,745ManagementAndGeneralAmt
Fundraising$16,062FundraisingAmt

Fees For Services Prof Fundraising FeesForServicesProfFundraising

FieldValueIRS element (for citing)
Total$51,576TotalAmt
Fundraising$51,576FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$270,318TotalAmt
Program Services$211,105ProgramServicesAmt
Management And General$48,914ManagementAndGeneralAmt
Fundraising$10,299FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$97,240TotalAmt
Program Services$58,082ProgramServicesAmt
Management And General$9,499ManagementAndGeneralAmt
Fundraising$29,659FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$89,399TotalAmt
Program Services$62,579ProgramServicesAmt
Management And General$13,410ManagementAndGeneralAmt
Fundraising$13,410FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$50,426TotalAmt
Program Services$43,948ProgramServicesAmt
Management And General$710ManagementAndGeneralAmt
Fundraising$5,768FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$221,153TotalAmt
Program Services$194,099ProgramServicesAmt
Management And General$26,921ManagementAndGeneralAmt
Fundraising$133FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$7,137TotalAmt
Management And General$7,137ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$9,953TotalAmt
Program Services$6,967ProgramServicesAmt
Management And General$1,493ManagementAndGeneralAmt
Fundraising$1,493FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtFundraisingFundraisingAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmt
INDIRECT EVENT EXPENSES$146,423$146,423
WEBSITE$55,081$8,262$38,557$8,262
POSTAGE$28,992$7,481$20,044$1,467
BANK & CREDIT CARD FEES$20,140$20,052$1$87

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$54,918TotalAmt
Program Services$30,011ProgramServicesAmt
Management And General$12,351ManagementAndGeneralAmt
Fundraising$12,556FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$5,665,227TotalAmt
Program Services$4,882,990ProgramServicesAmt
Management And General$235,719ManagementAndGeneralAmt
Fundraising$546,518FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$15,141BOYAmt
EOY$17,429EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$2,599,329BOYAmt
EOY$4,767,883EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$5,750,000BOYAmt
EOY$3,055,000EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$21,036BOYAmt
EOY$9,320EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$60,868BOYAmt
EOY$81,369EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$48,315LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$28,789LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$20,176BOYAmt
EOY$19,526EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
BOY$279,578BOYAmt
EOY$300,591EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$6,289BOYAmt
EOY$8,672EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$8,752,417BOYAmt
EOY$8,259,790EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$9,468BOYAmt
EOY$38,848EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$125,000BOYAmt
EOY$1,141,227EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$300,000BOYAmt
EOY$123,000EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$434,468BOYAmt
EOY$1,303,075EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,196,410BOYAmt
EOY$3,070,098EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$6,121,539BOYAmt
EOY$3,886,617EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$8,317,949BOYAmt
EOY$6,956,715EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$8,752,417BOYAmt
EOY$8,259,790EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$1,332,247ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$28,987NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,230,706CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,544,802CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,162,391CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,307,371CurrentTaxYearMinus1YearAmt
Current Tax Year$4,190,242CurrentTaxYearAmt
Total$11,435,512TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,230,706CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,544,802CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,162,391CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,307,371CurrentTaxYearMinus1YearAmt
Current Tax Year$4,190,242CurrentTaxYearAmt
Total$11,435,512TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,088,803SubstantialContributorsTotAmt
Public Support Total170$10,346,709PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,810CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,770CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,637CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,402CurrentTaxYearMinus1YearAmt
Current Tax Year$2,783CurrentTaxYearAmt
Total$13,402TotalAmt
FieldValueIRS element (for citing)
Total Support$11,448,914TotalSupportAmt
Gross Receipts Rltd Activities$311,209GrossReceiptsRltdActivitiesAmt
Public Support CY1700.90370PublicSupportCY170Pct
Public Support PY1700.91200PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule C IRS990ScheduleC

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$2,850FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$2,850FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$5,464,378FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$5,467,228FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$423,361FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$105,840FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$212,792CurrentYearMinus3Amt
Current Year Minus2$248,012CurrentYearMinus2Amt
Current Year Minus1$283,730CurrentYearMinus1Amt
Current Year$423,361CurrentYearAmt
Total$1,167,895TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$1,751,843LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$1,500CurrentYearMinus3Amt
Current Year Minus2$1,150CurrentYearMinus2Amt
Current Year Minus1$3,350CurrentYearMinus1Amt
Current Year$2,850CurrentYearAmt
Total$8,850TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$53,198CurrentYearMinus3Amt
Current Year Minus2$62,003CurrentYearMinus2Amt
Current Year Minus1$70,933CurrentYearMinus1Amt
Current Year$105,840CurrentYearAmt
Total$291,974TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$437,961GrassrootsCeilingAmt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$48,315OtherCostOrOtherBasisAmt
Depreciation$28,789DepreciationAmt
Book Value$19,526BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$19,526TotalBookValueLandBuildingsAmt
Total Rev Etc Audited Fincl Stmt$4,134,981TotalRevEtcAuditedFinclStmtAmt
Revenue Not Reported$0RevenueNotReportedAmt
Revenue Subtotal$4,134,981RevenueSubtotalAmt
Other Revenues Not Included$197,999OtherRevenuesNotIncludedAmt
Revenue Not Reported Fincl Stmt$197,999RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$4,332,980TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$5,467,228TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$5,467,228ExpensesSubtotalAmt
Other Expenses Not Included$197,999OtherExpensesNotIncludedAmt
Expenses Not Rpt Fincl Stmt$197,999ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$5,665,227TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART XI, LINE 4B - OTHER ADJUSTMENTS:INDIRECT EVENTS EXPENSE 197,999.
PART XII, LINE 4B - OTHER ADJUSTMENTS:INDIRECT EVENTS EXPENSE 197,999.

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp

FieldValueIRS element (for citing)
RegionEUROPE (INCLUDING ICELAND & GREENLAND)RegionTxt
Offices0OfficesCnt
Employee0EmployeeCnt
Type Of Activities ConductedMEDICAL RESEARCH GRANTSTypeOfActivitiesConductedTxt
Region Total Expenditures$808,686RegionTotalExpendituresAmt
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continutation Total Office0ContinutationTotalOfficeCnt
Continutation Total Employee0ContinutationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$808,686SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$808,686TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (4 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxt
EUROPERESEARCH PILOT GRANT$60,000CHECK
EUROPERESEARCH PILOT GRANT$60,000CHECK
EUROPEBIOMARKERS INITIATIVE$450,000CHECK
EUROPEBIOMARKERS INITIATIVE$238,686CHECK
FieldValueIRS element (for citing)
Total501c3 Org4Total501c3OrgCnt
Total Other Org4TotalOtherOrgCnt
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationRESEARCH GRANTS: GRANTEES SUBMIT INTERIM AND FINAL REPORTS WITH PROGRESS AND FINANCIAL INFORMATION.ExplanationTxt

Schedule G IRS990ScheduleG

FieldValueIRS element (for citing)
Special Fundraising EventsYes (X)SpecialFundraisingEventsInd
Agrmt Prof Fundraising Acty0AgrmtProfFundraisingActyInd

Fundraiser Activity Info FundraiserActivityInfoGrp

Organization Business Name OrganizationBusinessName

FieldValueIRS element (for citing)
Business Name Line1EVENT ASSOCIATES INCBusinessNameLine1Txt

US Address USAddress

FieldValueIRS element (for citing)
Address Line1162 WEST 56TH STREET SUITE 405AddressLine1Txt
CityNEW YORKCityNm
State AbbreviationNYStateAbbreviationCd
ZIP10019ZIPCd
FieldValueIRS element (for citing)
ActivityFUND RAISING EVENT PLANNINGActivityTxt
Fundraiser Control Of Funds0FundraiserControlOfFundsInd
Gross Receipts$1,893,277GrossReceiptsAmt
Retained By Contractor$51,576RetainedByContractorAmt
Net To Organization$1,841,701NetToOrganizationAmt
FieldValueIRS element (for citing)
Total Gross Receipts$1,893,277TotalGrossReceiptsAmt
Total Retained By Contractors$51,576TotalRetainedByContractorsAmt
Total Net To Organization$1,841,701TotalNetToOrganizationAmt

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1HOPE RISINGEvent1Nm
Gross Receipts Event1$1,893,277GrossReceiptsEvent1Amt
Charitable Contri Event1$1,812,677CharitableContriEvent1Amt
Gross Revenue Event1$80,600GrossRevenueEvent1Amt
Food And Beverage Event1$92,875FoodAndBeverageEvent1Amt
Other Direct Expenses Event1$2,061OtherDirectExpensesEvent1Amt
Gross Receipts Total$1,893,277GrossReceiptsTotalAmt
Charitable Contributions Tot$1,812,677CharitableContributionsTotAmt
Gross Revenue Total Events$80,600GrossRevenueTotalEventsAmt
Food And Beverage Total Events$92,875FoodAndBeverageTotalEventsAmt
Oth Direct Expnss Total Events$2,061OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$94,936DirectExpenseSummaryEventsAmt
Net Income Summary-$14,336NetIncomeSummaryAmt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE G, PART I, LINE 2B, COLUMN (V)FormAndLineReferenceDesc
ExplanationCOORDINATION AND PLANNING OF FUND RAISING EVENT "HOPE RISING" IN SEPTEMBER 2016.ExplanationTxt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (7 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
ALZHEIMER DRUG DISCOVERY FOUNDATION
57 W 57TH STREET STE 10019NEW YORKNY10019201082179501(C)(3)$600,000DRUG DISCOVERY
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVENUEBOSTONMA02115042774441501(C)(3)$515,000BIOMARKERS INITIATIVE
UNIVERSITY OF PITTSBURGH DEPARTMENT OF NEUROLOGY
P O BOX 371220PITTSBURGHPA152517220250965591501(C)(3)$110,000MEDICAL RESEARCH
ICAHN SCHOOL OF MEDICINE
1 GUSTAVE L LEVY PLACENEW YORKNY10029136171197501(C)(3)$110,000MEDICAL RESEARCH
WASHINGTON UNIVERSITY
700 ROSEDALE AVENUEST LOUISMO63112430653611501(C)(3)$495,453BIOMARKERS INITIATIVE
MAYO CLINIC JACKSONVILLE
4500 SAN PABLO ROADJACKSONVILLEFL32224590714831501(C)(3)$300,000BIOMARKERS INITIATIVE
THE FTD DISORDERS REGISTRY LLC
637 CAROLINA STREETSAN FRANCISCOCA94107473601782501(C)(3)$100,000PATIENT REGISTRY
FieldValueIRS element (for citing)
Total501c3 Org7Total501c3OrgCnt
Total Other Org7TotalOtherOrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp

FieldValueIRS element (for citing)
Grant TypeRESPITE CARE AND TRAVEL GRANTSGrantTypeTxt
Recipient180RecipientCnt
Cash Grant$87,649CashGrantAmt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationRESPITE AND TRAVEL GRANTS: GRANTEES SUBMIT RECEIPTS AND PAYMENT IS MADE VIA REIMBURSEMENT. RESEARCH GRANTS: GRANTEES SUBMIT INTERIM AND FINAL REPORTS WITH PROGRESS AND FINANCIAL INFORMATION.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (2 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
SUSAN DICKINSON
CHIEF EXECUTIVE OFFICER$142,500$0$0$0$0$0$0$0$13,250$0$155,750$0$0$0
NADINE TATTON
SCIENTIFIC DIRECTOR$138,500$0$0$0$0$0$0$0$15,571$0$154,071$0$0$0

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution7ContributionCnt
Noncash Contributions Rpt F990$51,258NoncashContributionsRptF990Amt
Method Of Determining RevenuesDAILY AVG. MARKET VALUEMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC GiftsYes (1)ReviewProcessUnusualNCGiftsInd
Third Parties UsedYes (1)ThirdPartiesUsedInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 32B:FormAndLineReferenceDesc
ExplanationAFTD RETAINS THE SERVICES OF CETERA INVESTMENT SERVICES LLC TO SELL SHARES OF SECURITIES RECEIVED AS CONTRIBUTIONS.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (6 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 2MICHAEL STOWELL AND BONNIE SHEPHERD HAVE A FAMILY RELATIONSHIP - SON AND MOTHER. STEPHEN AND DEBBIE FENOGLIO HAVE A FAMILY RELATIONSHIP - SIBLINGS-IN-LAW
FORM 990, PART VI, SECTION B, LINE 11BTHE COMPLETE 990 WAS FORWARDED TO AFTD'S AUDIT COMMITTEE, WHICH REVIEWED IT IN DETAIL AND FORWARDED IT ALONG TO THE BOARD OF DIRECTORS. BOARD MEMBERS RECEIVE A COPY OF THE COMPLETED 990 IN ADVANCE OF FILING, AND WERE ADVISED THAT THEY WOULD NEED TO READ IT IN FULL. THE AUDIT COMMITTEE CHAIR, TREASURER, CEO AND CFO WERE AVAILABLE TO CLARIFY ANY ISSUES. DURING A BOARD MEETING IN SEPTEMBER 2017 TIME WAS RESERVED FOR REVIEW AND DISCUSSION OF THE 990. THE 990 WAS APPROVED BY THE BOARD BEFORE FILING.
FORM 990, PART VI, SECTION B, LINE 12CALL 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 15ATHE PERFORMANCE REVIEW OF AFTD'S CEO WAS BASED ON THE PAST FY RESULTS. IT INCLUDES INPUT THAT THE BOARD CHAIR, VICE CHAIR AND SECRETARY OBTAINED FROM AFTD BOARD MEMBERS, MAC MEMBERS AND MAJOR DONORS. THE PERFORMANCE REVIEW WAS DRAFTED BY THE VICE CHAIR AND SECRETARY AND FINALIZED BY THE CHAIR. A RECOMMENDED SALARY RANGE WAS PUT FORTH BY A COMPENSATION SUBCOMMITTEE CONSISTING OF THE BOARD CHAIR AND FOUNDER/PAST CHAIR. THIS SALARY RANGE WAS DETERMINED AFTER REVIEWING EXTENSIVE SALARY COMPARABILITY DATA FOR THE GREATER PHILADELPHIA AREA. THE FINAL SALARY RANGE WAS APPROVED BY THE FULL BOARD OF DIRECTORS, WHO ALSO EMPOWERED THE EXECUTIVE COMMITTEE TO DETERMINE THE FINAL COMPENSATION PACKAGE FOR THE CEO BASED ON THE APPROVED RANGE.
FORM 990, PART VI, SECTION C, LINE 19ALL GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST FROM THE OFFICE.
FORM 990 PART XII LINE 2CTHE PROCESS IN WHICH THE ORGANIZATION ASSUMES RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT HAS NOT CHANGED FROM THE PRIOR YEAR.

Schedule R IRS990ScheduleR

Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp

Disregarded Entity Name DisregardedEntityName

FieldValueIRS element (for citing)
Business Name Line1THE FTD DISORDERS REGISTRY LLCBusinessNameLine1Txt

US Address USAddress

FieldValueIRS element (for citing)
Address Line11650 OWENS STREET SUITE 205AddressLine1Txt
CitySAN FRANCISCOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP94158ZIPCd
FieldValueIRS element (for citing)
EIN473601782EIN
Primary ActivitiesPROVIDES PATIENT REGISTRY FOR THOSE AFFECTED BY FTDPrimaryActivitiesTxt
Legal Domicile StateDELegalDomicileStateCd
Exempt Code Section501(C)(3)ExemptCodeSectionTxt
Public Charity StatusLINE 7PublicCharityStatusTxt
Controlled Organization0ControlledOrganizationInd
FieldValueIRS element (for citing)
Receipt Of Int Annts Rnts Rylts0ReceiptOfIntAnntsRntsRyltsInd
Gift Grnt Or Cap Contri To Oth OrgYes (1)GiftGrntOrCapContriToOthOrgInd
Gift Grnt Cap Contri From Oth Org0GiftGrntCapContriFromOthOrgInd
Loans Or Guarantees To Other Org0LoansOrGuaranteesToOtherOrgInd
Loans Or Guarantees From Oth Org0LoansOrGuaranteesFromOthOrgInd
Div Related Organization0DivRelatedOrganizationInd
Asset Sale To Other Org0AssetSaleToOtherOrgInd
Asset Purchase From Other Org0AssetPurchaseFromOtherOrgInd
Asset Exchange0AssetExchangeInd
Rental Of Facilities To Oth Org0RentalOfFacilitiesToOthOrgInd
Rental Of Fclts From Oth Org0RentalOfFcltsFromOthOrgInd
Perform Of Services For Oth OrgYes (1)PerformOfServicesForOthOrgInd
Perform Of Services By Other Org0PerformOfServicesByOtherOrgInd
Sharing Of Facilities0SharingOfFacilitiesInd
Paid Employees Sharing0PaidEmployeesSharingInd
Reimbursement Paid To Other Org0ReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other Org0ReimbursementPaidByOtherOrgInd
Transfer To Other Org0TransferToOtherOrgInd
Transfer From Other Org0TransferFromOtherOrgInd

Transactions Related Org TransactionsRelatedOrgGrp (2 entries)

Transaction TypeTransactionTypeTxtInvolvedInvolvedAmtMethod Of Amount DeterminationMethodOfAmountDeterminationTxt
THE FTD DISORDERS REGISTRY LLC
B$150,000CASH PAYMENT
THE FTD DISORDERS REGISTRY LLC
L$139,332INVOICED AMOUNTS

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