STRATEGY STUDIO / NONPROFIT PEOPLE SEARCH

THE FAMILIAL HYPERCHOLESTEROLEMIA FOUNDATION: Form 990, tax year 2021

View the entire original 990 at ProPublica ↗

Organization
THE FAMILIAL HYPERCHOLESTEROLEMIA FOUNDATION (EIN 45-4597425)
Tax period
2021-01-01 to 2021-12-31
Filed
2022-11-14
IRS object ID
202213189349304831
Schema version
2021v4.2
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)
Return2022-11-14T10:30:55-06:00ReturnTs
Tax Period End2021-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN954557617PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1Harrington Group CPAs LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line12698 Mataro StreetAddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91107ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2021-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN454597425EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1The Familial HypercholesterolemiaBusinessNameLine1Txt
Business Name Line2FoundationBusinessNameLine2Txt
FieldValueIRS element (for citing)
Business Name ControlFAMIBusinessNameControlTxt
Phone6265834674PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1680 E Colorado Blvd 180AddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91101ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonKatherine WilemonPersonNm
Person TitleCEOPersonTitleTxt
Phone6265834674PhoneNum
Signature2022-11-14SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstKatherinePersonFirstNm
Person LastWilemonPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonTonetta L ConnerPreparerPersonNm
PTINP01775198PTIN
Phone6264036801PhoneNum

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer3TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2021TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

Doing Business As Name DoingBusinessAsName

FieldValueIRS element (for citing)
Business Name Line1FH FoundationBusinessNameLine1Txt
FieldValueIRS element (for citing)
Principal OfficerKatherine WilemonPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1680 E Colorado Blvd 180AddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91101ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$4,759,952GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website Addresswww.thefhfoundation.orgWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2012FormationYr
Legal Domicile StateCALegalDomicileStateCd
Activity Or MissionThe FH Foundation is a patient-centered nonprofit organization dedicated to research,ActivityOrMissionDesc
Voting Members Governing Body8VotingMembersGoverningBodyCnt
Voting Members Independent7VotingMembersIndependentCnt
Total Employee11TotalEmployeeCnt
Total Volunteers7TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$2,147,210PYContributionsGrantsAmt
CY Contributions Grants$3,613,537CYContributionsGrantsAmt
PY Program Service Revenue$1,570,126PYProgramServiceRevenueAmt
CY Program Service Revenue$1,114,100CYProgramServiceRevenueAmt
PY Investment Income$25,313PYInvestmentIncomeAmt
CY Investment Income$32,015CYInvestmentIncomeAmt
PY Other Revenue$13,198PYOtherRevenueAmt
CY Other Revenue$300CYOtherRevenueAmt
PY Total Revenue$3,755,847PYTotalRevenueAmt
CY Total Revenue$4,759,952CYTotalRevenueAmt
PY Grants And Similar Paid$0PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$0CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,398,712PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,264,378CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$79,225CYTotalFundraisingExpenseAmt
PY Other Expenses$1,721,964PYOtherExpensesAmt
CY Other Expenses$1,592,629CYOtherExpensesAmt
PY Total Expenses$3,120,676PYTotalExpensesAmt
CY Total Expenses$2,857,007CYTotalExpensesAmt
PY Revenues Less Expenses$635,171PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$1,902,945CYRevenuesLessExpensesAmt
Total Assets BOY$4,371,270TotalAssetsBOYAmt
Total Assets EOY$6,401,928TotalAssetsEOYAmt
Total Liabilities BOY$307,977TotalLiabilitiesBOYAmt
Total Liabilities EOY$384,859TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$4,063,293NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,017,069NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionThe Familial Hypercholesterolemia Foundation ("The FH Foundation") was incorporated February 17, 2012 as a California nonprofit corporation. The FH Foundation is a patient-centered nonprofit dedicated to education, advocacy, and research of familial hypercholesterolemia (FH). Our mission is to save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia and Lipoprotein(a). Through research, advocacy, and education we play a critical role in driving change, and empower families to navigate their own health.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$459,668ExpenseAmt
Revenue$1,114,100RevenueAmt
DescFIND FH - Flag/Identify/Network/Deliver is a national precision screening initiative that utilizes machine learning, natural language processing, and data mining techniques to identify individuals whose profiles are consistent with FH. FIND FH includes the development, validation, and implementation of data models to flag individuals who need to be screened by a clinician for a possible FH diagnosis. This initiative directly addresses the fact that most individuals with FH are currently undiagnosed and do not have the opportunity to reduce their risk of early and aggressive cardiovascular disease. The FIND FH Model searches healthcare encounter data sets including lab results, claims data, and electronic health record systems. With the results, the Family Heart Foundation identifies healthcare providers (HCPs) with patients who have medical records containing key features consistent with an individual having FH. Nationally, FIND FH has identified over 1.3 million individuals with profiles consistent with FH. The Family Heart Foundation is implementing HCP and individual engagement practices at multiple major health systems participating in the Flag Identify Network Deliver Collaborative Learning Network (FIND CLN). These large-scale implementation projects are designed to reduce barriers to evidence-based care and to improve patient outcomes. At each health system, we engage stakeholders and act as a hub for learning across roles within the health system. The Family Heart Foundation has identified and addressed numerous barriers and facilitators to implementation. This growing expertise positions us as a leading organization to implement FH programs in clinical settings across the US. In the future, the Family Heart Foundation hopes to expand our FIND efforts to identify those at risk for high Lipoprotein(a).Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$451,301ExpenseAmt
DescCASCADE FH Registry - To improve the understanding of the state of diagnosis, treatment, and outcomes for FH in the United States, in 2013 the Family Heart Foundation launched a national FH patient registry, a key tool for FH research. Since then, we have convened a network of over 40 leading clinical sites across the US, enrolled over 6,000 individuals in the Registry, who are followed annually. The Family Heart Foundation, in partnership with our Principal Investigators have published 19 manuscripts, abstracts, and posters, contributing to the evidence base for healthcare decision making for FH at the patient, healthcare provider, health system, and policy levels. The Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia (CASCADE FH Registry) collects comprehensive longitudinal data on adults and children with diagnosed FH, including baseline and follow-up information on demographics, laboratory values, treatment, and clinical events. CASCADE FH Registry research has quantified gaps in care, including late diagnosis, delayed treatment, disparities in care, cardiovascular outcomes, and factors that contribute to LDL goal attainment and to cardiovascular risk. This is the only longitudinal observational research study of its kind in the US.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$334,429ExpenseAmt
DescFOCUS - FH Optimal Care in the US (FOCUS) creates and disseminates effective tools for patients, healthcare providers, policy makers, payers, and other partners to be used throughout the diagnosis, treatment, and long-term management phases of FH. FOCUS provides data-backed assistance utilizing clinical, economic, and humanistic outcomes to better inform the path forward. This work quantifies the challenges that individuals with FH have in gaining access to important new therapies. The FH Foundation addresses these challenges through data insights, awareness-raising efforts, educational tools (including the FOCUS Multimedia Toolkit and a mobile diagnostic app), and engagement of health plans and systems.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (5 entries)

ExpenseExpenseAmtDescDesc
$150,113FH Global Summit - The FH Foundation's FH Global Summit is an invitation-only conference bringing together world-renowned experts in FH, genetics, and healthcare policy to improve the awareness, diagnosis and management of FH. This two-day event features compelling and cutting edge presentations that share insights and research to enhance the scientific understanding of FH. Presenters and guests include leading cardiologists, lipidologists, researchers, physicians, and patients. The event provides a grand platform to share insights and practices underline for concerted and urgent action on behalf of those living with FH.
$290,478FH Awareness - The FH Awareness Campaign is an annual international health awareness and educational campaign that raises awareness of FH, bringing worldwide attention to its diagnosis and treatment throughout the month of September. As a key part of the campaign's development, the FH Foundation established FH Awareness Day on September 24th, which is now strengthened by multiple state proclamations and celebrated on a global scale.Since 2012, the FH Awareness Campaign has resulted in a potential reach of more than 80 million through its strategic use of news releases and PSAs, outdoor media, podcasts, and social media, including an annual "Tweet-a-thon."
$13,188Global Network - The Global Network is an effort to build an international collaborative community to address gaps in care for individuals with FH. The FH Foundation convenes stakeholders from around the world and acts as an honest broker for data driven solutions to improve outcomes for those living with FH. The Global Network is our effort to extend our mission and impact on a broader stage. This program includes the translation and delivery of our printed and online materials into many languages. Our website and social media platforms are often the first line of communication and the Global Network manages this outreach outside of the United States. In addition to the FH Foundation Staff, the members of the FH Foundation Scientific Advisory Board serve as ambassadors for our mission at international conferences, as leaders of professional organizations, and as principal investigators of scientific projects at major universities - key initiatives that extend our Global Network and accelerate our outreach.
$27,360The FH Foundation's Corporate Advisory Council (CAC) offers companies the opportunity to invest in the continued growth and success of the Familial Hypercholesterolemia (FH) Foundation by providing counsel and support to the leadership of the FH Foundation. The CAC is a unique forum for leaders in the pharmaceutical and biopharmaceutical industries, payers, communications sectors, bioinformatics, genomics, and healthcare institutions to engage in a bi-directional conversation aimed at positively impacting the FH community. The FH Foundation relies on the collective experience of CAC members to empower and activate our mission.
$778,477The FH Foundation conducted other smaller program activities throughout the year.
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$1,259,616TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$2,505,014TotalProgramServiceExpensesAmt
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
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To Org0MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising Activities0FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To Organizations0GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
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 With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document14IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee11EmployeeCnt
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 Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members8GoverningBodyVotingMembersCnt
Independent Voting Member7IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
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 FldCAStatesWhereCopyOfReturnIsFldCd
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)
Phone6265834674PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1680 E Colorado Blvd 180AddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91101ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (11 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
William Neal
Chair Emeritus (deceased 1/21)1.00Yes (X)Yes (X)$0$0$0
Dan Rader
Vice Chair1.00Yes (X)Yes (X)$0$0$0
Stacey Lane
Chair1.00Yes (X)Yes (X)$0$0$0
Michael Shapiro
Secretary1.00Yes (X)Yes (X)$0$0$0
Allison Jamison
Treasurer1.00Yes (X)Yes (X)$0$0$0
Katherine Wilemon
CEO/Board Member40.00Yes (X)Yes (X)$340,251$0$0
Barry Brooks
Board Member1.00Yes (X)$0$0$0
Joshua Knowles
Board Member1.00Yes (X)$0$0$0
Catherine Ahmed
VP of Policy40.00$180,000$0$0Yes (X)
E Erikson
Finance Manager40.00$115,385$0$15,900Yes (X)
M McGowan
CMO20.00$115,385$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$751,021TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$15,900TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K4IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (3 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
Atomo Inc
1603 Falcon Ledge DrAustinTX78746Consulting$677,324
Ernst & Young LLP
200 Plaza DriveSecaucusNJ07094Web SEO & Hosting$178,567
Google Inc Cloud
1600 Amphitheatre ParkwayMountain ViewCA94043Data Storage$113,631
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K3CntrctRcvdGreaterThan100KCnt
Government Grants$427,397GovernmentGrantsAmt
All Other Contributions$3,186,140AllOtherContributionsAmt
Total Contributions$3,613,537TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescContract feesDesc
Business900099BusinessCd
Total Revenue Column$1,114,100TotalRevenueColumnAmt
Related Or Exempt Func Income$1,114,100RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$1,114,100TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$32,015TotalRevenueColumnAmt
Exclusion$32,015ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescOther incomeDesc
Business900099BusinessCd
Total Revenue Column$300TotalRevenueColumnAmt
Exclusion$300ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$300OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$4,759,952TotalRevenueColumnAmt
Related Or Exempt Func Income$1,114,100RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$32,315ExclusionAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$340,251TotalAmt
Program Services$323,238ProgramServicesAmt
Management And General$17,013ManagementAndGeneralAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$793,122TotalAmt
Program Services$618,448ProgramServicesAmt
Management And General$122,779ManagementAndGeneralAmt
Fundraising$51,895FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$58,984TotalAmt
Program Services$45,271ProgramServicesAmt
Management And General$11,887ManagementAndGeneralAmt
Fundraising$1,826FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$72,021TotalAmt
Program Services$55,278ProgramServicesAmt
Management And General$14,514ManagementAndGeneralAmt
Fundraising$2,229FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$51,958TotalAmt
Program Services$29,611ProgramServicesAmt
Management And General$22,347ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$16,775TotalAmt
Program Services$11,172ProgramServicesAmt
Management And General$4,860ManagementAndGeneralAmt
Fundraising$743FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$107,079TotalAmt
Program Services$75,218ProgramServicesAmt
Management And General$25,881ManagementAndGeneralAmt
Fundraising$5,980FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$441,539TotalAmt
Program Services$433,799ProgramServicesAmt
Management And General$1,164ManagementAndGeneralAmt
Fundraising$6,576FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$36,730TotalAmt
Program Services$7,651ProgramServicesAmt
Management And General$26,549ManagementAndGeneralAmt
Fundraising$2,530FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$19,819TotalAmt
Program Services$13,199ProgramServicesAmt
Management And General$5,742ManagementAndGeneralAmt
Fundraising$878FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$15,197TotalAmt
Program Services$8,862ProgramServicesAmt
Management And General$4,563ManagementAndGeneralAmt
Fundraising$1,772FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$12,278TotalAmt
Program Services$10,630ProgramServicesAmt
Management And General$802ManagementAndGeneralAmt
Fundraising$846FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$560TotalAmt
Program Services$19ProgramServicesAmt
Management And General$541ManagementAndGeneralAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$8,973TotalAmt
Program Services$6,729ProgramServicesAmt
Management And General$898ManagementAndGeneralAmt
Fundraising$1,346FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$16,880TotalAmt
Program Services$11,892ProgramServicesAmt
Management And General$2,610ManagementAndGeneralAmt
Fundraising$2,378FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
Data & Research$690,317$690,239$78
Legal settlement$160,000$160,000
Bank charges$10,689$10,463$226
Membership/subscription$3,835$3,758$77

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$2,857,007TotalAmt
Program Services$2,505,014ProgramServicesAmt
Management And General$272,768ManagementAndGeneralAmt
Fundraising$79,225FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,477,314BOYAmt
EOY$2,526,626EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$1,903,380BOYAmt
EOY$1,642,172EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$70,000BOYAmt
EOY$1,197,431EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
EOY$75,000EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$11,527BOYAmt
EOY$11,291EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$36,891LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$29,692LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$12,554BOYAmt
EOY$7,199EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$883,819BOYAmt
EOY$941,800EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$12,676BOYAmt
EOY$409EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$4,371,270BOYAmt
EOY$6,401,928EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$159,810BOYAmt
EOY$349,859EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$35,000EOYAmt

Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp

FieldValueIRS element (for citing)
BOY$148,167BOYAmt
EOY$0EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$307,977BOYAmt
EOY$384,859EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,606,453BOYAmt
EOY$3,194,632EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,456,840BOYAmt
EOY$2,822,437EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,063,293BOYAmt
EOY$6,017,069EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,371,270BOYAmt
EOY$6,401,928EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$1,902,945ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$50,831NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS Audited0FSAuditedInd
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$4,249,484CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,820,693CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,848,898CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,147,210CurrentTaxYearMinus1YearAmt
Current Tax Year$3,613,537CurrentTaxYearAmt
Total$13,679,822TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$4,249,484CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,820,693CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,848,898CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,147,210CurrentTaxYearMinus1YearAmt
Current Tax Year$3,613,537CurrentTaxYearAmt
Total$13,679,822TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$8,707,225SubstantialContributorsTotAmt
Public Support Total170$4,972,597PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,464CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$9,206CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$6,761CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$25,313CurrentTaxYearMinus1YearAmt
Current Tax Year$32,015CurrentTaxYearAmt
Total$76,759TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$6,675CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$149CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$8,243CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$13,198CurrentTaxYearMinus1YearAmt
Current Tax Year$300CurrentTaxYearAmt
Total$28,565TotalAmt
FieldValueIRS element (for citing)
Total Support$13,785,146TotalSupportAmt
Gross Receipts Rltd Activities$6,919,704GrossReceiptsRltdActivitiesAmt
Public Support CY1700.36070PublicSupportCY170Pct
Public Support PY1700.30070PublicSupportPY170Pct
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

FieldValueIRS element (for citing)
VolunteersYes (1)VolunteersInd
Paid Staff Or ManagementYes (1)PaidStaffOrManagementInd
Media Advertisements0MediaAdvertisementsInd
Mailings Members0MailingsMembersInd
Publications Or Broadcast0PublicationsOrBroadcastInd
Grants Other Organizations0GrantsOtherOrganizationsInd
Direct Contact LegislatorsYes (1)DirectContactLegislatorsInd
Direct Contact Legislators$63,887DirectContactLegislatorsAmt
Rallies Demonstrations0RalliesDemonstrationsInd
Other Activities0OtherActivitiesInd
Total Lobbying Expenditures$63,887TotalLobbyingExpendituresAmt
Not Described Section501c30NotDescribedSection501c3Ind

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart II-B, Line 1:FormAndLineReferenceDesc
ExplanationThe FH Foundation hired the firm McAllister & Quinn to help us advance our efforts in educating Members of Congress on the need to find, screen, diagnose and treat individuals with familial hypercholesterolemia (FH) - approximately 1.3 million Americans and only 15% of them know they have FH. McAllister & Quinn developed a strategy with us to advocate to Members of Congress for specific funding to address this unmet need. The strategy began with McAllister & Quinn attending a volunteer education seminar in January 2019 where they trained 22 volunteers (Advocates) and FH Foundation staff members about the Congressional appropriations process and how to ask Members for their support. Prior to this Advocates and staff training, FH Foundation staff drafted a letter of request asking for a specific amount of funds to be added to the Centers for Disease Control and Prevention (CDC) budget to address FH. Another letter of request was drafted asking for FH to be added to the eligible topics for research funding in the Peer Reviewed Medical Research Program of the Department of Defense. FH Foundation staff members set up Congressional visits with Members or their staff for the Advocates and FH Foundation staff members, with the help of McAllister & Quinn. Twenty-eight meetings were held with Members of Congress in January 2019 and approximately 10 additional meetings were held throughout the year. After these meetings, the Advocates and FH Foundation staff members followed up by email with the Members throughout the FY20 appropriations process. In 2020, we continued our engagement with McAllister & Quinn in order to advocate for funding for the CDC and keeping familial hypercholesterolemia as an eligible topic for research funding in the Peer Reviewed Medical Research Program of the Department of Defense. We followed a similar plan and went to Capitol Hill with 19 of our trained volunteer Advocates in January 2020 and held 30 meetings with Members of Congress or their staff. We followed up with several meetings by video conference throughout the year, as in-person meetings were not possible due to Covid. Advocates and other FH Foundation volunteers followed up with emails to Members and their staff throughout the FY21 appropriations process. The lobbying resulted in CDC being appropriated $100,000 for the second time to specifically address familial hypercholesterolemia. In addition, familial hypercholesterolemia was continued as an eligible research topic in the DoD Peer Reviewed Medical Research Program. In 2021, we again engaged McAllister & Quinn to advocate for funding to address FH for the CDC and to keep FH as an eligible topic for research funding in the Peer Reviewed Medical Research Program of the Department of Defense. Covid further restricted our lobbying efforts in 2021. All requests to Members of Congress were made via email and by submitting letters and appropriation request forms by email or portal to Congressional offices. Two virtual meetings were held with specific local offices, but no volunteer Advocates visited Capitol Hill for in-person meetings. Due to Covid, our efforts in 2021 were less than in previous years. Once again, the lobbying resulted in CDC being appropriated $100,000 for the third time to specifically address familial hypercholesterolemia. In addition, familial hypercholesterolemia was continued as an eligible research topic in the DoD Peer Reviewed Medical Research Program.ExplanationTxt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$36,891OtherCostOrOtherBasisAmt
Depreciation$29,692DepreciationAmt
Book Value$7,199BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$7,199TotalBookValueLandBuildingsAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$4,810,783TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$50,831NetUnrealizedGainsInvstAmt
Revenue Not Reported$50,831RevenueNotReportedAmt
Revenue Subtotal$4,759,952RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$4,759,952TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$2,857,007TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$2,857,007ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$2,857,007TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart X, Line 2:FormAndLineReferenceDesc
ExplanationThe FH Foundation is exempt from taxation under Internal Revenue Code Section 501(c)(3) and California Revenue and Taxation Code Section 23701d. Generally accepted accounting principles provide accounting and disclosure guidance about positions taken by an organization in its tax returns that might be uncertain. Management has considered its tax positions and believes that all of the positions taken by The FH Foundation in its federal and state exempt organization tax returns are more likely than not to be sustained upon examination. The FH Foundation's returns are subject to examination by federal and state taxing authorities, generally for three and four years, respectively, after they are filed.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 PaymentsYes (1)AnyNonFixedPaymentsInd
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
Katherine Wilemon
CEO/Board Member$267,751$0$72,500$0$0$0$0$0$0$0$340,251$0$0$0
Catherine Ahmed
VP of Policy$180,000$0$0$0$0$0$0$0$0$0$180,000$0$0$0

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart I, Line 7FormAndLineReferenceDesc
ExplanationKatherine Wilemon's bonus amount was determined and agreed by the FH Foundation Board, each year in the spring, based upon performance from the prior year. A. Sheldon's bonus amount was determined by Katherine WIlemon based upon performance in 2020.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Section B, line 11bThe Form 990 is e-mailed to each member and reviewed via electronic media prior to filing.
Form 990, Part VI, Section B, line 12cConflicts of interest are monitored annually and reviewed by the governing body prior to approval or determination of action.
Form 990, Part VI, Section B, line 15aThe CEO's salary is reviewed on an annual basis by the Board of Directors and then approved by the Executive Committee. Part VI, line 15(b) was answered "no" as there were no other officers or key employees as defined in Form 990 instructions who received compensation.
Form 990, Part VI, Section C, line 19All documents are available to the public upon request.