THE FAMILIAL HYPERCHOLESTEROLEMIA FOUNDATION: Form 990, tax year 2017

View the entire original 990 at ProPublica ↗

Organization
THE FAMILIAL HYPERCHOLESTEROLEMIA FOUNDATION (EIN 45-4597425)
Tax period
2017-01-01 to 2017-12-31
Filed
2018-11-07
IRS object ID
201813119349301661
Schema version
2017v2.3
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)
Return2018-11-07T11:15:03-06:00ReturnTs
Tax Period End2017-12-31TaxPeriodEndDt

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 Line1234 East Colorado Blvd Suite M150AddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91101ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2017-01-01TaxPeriodBeginDt

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 Line1959 E Walnut Street No 220AddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91106ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonKatherine WilemonPersonNm
Person TitleCEOPersonTitleTxt
Phone6265834674PhoneNum
Signature2018-11-07SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

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

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address64.88.174.3IPv4AddressTxt
FieldValueIRS element (for citing)
IP2018-11-07IPDt
IP Tm09:14:46IPTm
IP TimezonePSIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id8397A78A26EEEFE4F0D1CC12463F2ED97210679CAtSubmissionCreationDeviceId
At Submission Filing Device IdD0B37697D52A5701CCEF934FA1961397BB4A207FAtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2017TaxYr
Build TS2019-02-21 02:37:17ZBuildTS

Form 990 IRS990

Doing Business As Name DoingBusinessAsName

FieldValueIRS element (for citing)
Business Name Line1The FH FoundationBusinessNameLine1Txt
FieldValueIRS element (for citing)
Principal OfficerKatherine WilemonPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1959 E Walnut Street No 220AddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91106ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$4,940,012GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website Addresswww.thefhfoundation.orgWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2012FormationYr
Legal Domicile StateCALegalDomicileStateCd
Activity Or 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). The mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. If left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds.ActivityOrMissionDesc
Voting Members Governing Body8VotingMembersGoverningBodyCnt
Voting Members Independent7VotingMembersIndependentCnt
Total Employee17TotalEmployeeCnt
Total Volunteers50TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$3,993,797PYContributionsGrantsAmt
CY Contributions Grants$3,499,484CYContributionsGrantsAmt
PY Program Service Revenue$2,166,100PYProgramServiceRevenueAmt
CY Program Service Revenue$1,420,300CYProgramServiceRevenueAmt
PY Investment Income$2,796PYInvestmentIncomeAmt
CY Investment Income$13,553CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$6,675CYOtherRevenueAmt
PY Total Revenue$6,162,693PYTotalRevenueAmt
CY Total Revenue$4,940,012CYTotalRevenueAmt
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$939,141PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,234,070CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$212,791CYTotalFundraisingExpenseAmt
PY Other Expenses$3,151,331PYOtherExpensesAmt
CY Other Expenses$3,803,126CYOtherExpensesAmt
PY Total Expenses$4,090,472PYTotalExpensesAmt
CY Total Expenses$5,037,196CYTotalExpensesAmt
PY Revenues Less Expenses$2,072,221PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$97,184CYRevenuesLessExpensesAmt
Total Assets BOY$6,970,129TotalAssetsBOYAmt
Total Assets EOY$6,892,582TotalAssetsEOYAmt
Total Liabilities BOY$179,265TotalLiabilitiesBOYAmt
Total Liabilities EOY$180,835TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$6,790,864NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,711,747NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionThe FH Foundation is a patient-centered nonprofit organization dedicated to education, advocacy, and research of Familial Hypercholesterolemia(FH).MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$366,840ExpenseAmt
DescFH Community in Action - The FH Community in Action program recruits and trains volunteers - "Advocates for Awareness" -- who represent the FH Foundation and the larger FH community by sharing their experiences with FH and helping others through their own journeys. This program builds an online and in-person community of those who are deeply affected by FH.The FH Foundation's volunteer Advocates for Awareness receive formal training as public speakers and representatives of the FH Foundation. These Advocates speak at health fairs, employee meetings, local organizations, and to media when possible. They are armed with information and resources provided by the FH Foundation to help them deliver an accurate and engaging message.Advocates also participate in Grand Rounds - a modern approach to a traditional concept. Grand Rounds are a presentation to a medical audience that increases understanding of FH within the medical community. The physician leading the Grand Round is paired with an Advocate to co-present information about diagnosis and treatment based on medical research and current clinical problems of FH.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,264,037ExpenseAmt
Revenue$800,000RevenueAmt
DescCASCADE FH Registry - To address gaps in FH diagnosis and treatment, in 2013, the FH Foundation launched and now maintains a national FH patient registry. The Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia (CASCADE FH Registry) collects comprehensive longitudinal data on individuals with confirmed or suspected FH. The CASCADE FH Registry serves as a key instrument to support health service planning, increase knowledge on the disease, and pool data for epidemiological, clinical and outcomes research, as well as for therapy effectiveness. The CASCADE FH Registry employs an innovative hybrid design to maximize data collection: (A) data is collected from partnering clinical sites, and (B) patients can directly enter their data via a user-friendly patient portal hosted on the FH Foundation website. This dual-pathway enrollment design maximizes outreach and provides both the clinical and patient perspective. Data entered through both methods are secure and can be accessed through queries. Data includes baseline and follow-up information on demographics, laboratory values, treatment, and clinical events.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$3,440ExpenseAmt
DescFH 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."Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (4 entries)

ExpenseExpenseAmtRevenueRevenueAmtDescDesc
$1,700,843$587,000FIND FH - Flag/Identify/Network/Deliver - is a national initiative that utilizes machine learning, natural language processing, and data mining techniques to identify individuals whose profiles are consistent with FH patients. FIND FH directly addresses the fact that an estimated 90% of patients with FH are currently undiagnosed and do not have the opportunity to reduce their risk of early and aggressive cardiovascular disease. FIND FH includes the development, validation, and implementation of algorithms to flag individuals who need to be screened by a clinician for a possible FH diagnosis. The algorithms search healthcare encounter data sets including lab results, claims data, and electronic health record systems. With the results, The FH Foundation identifies healthcare providers (HCPs) with patients who have medical records containing key features consistent with a person having FH and reaches out to those HCPs to help them find the patients to be screened.
$121,399Global 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.
$491,231FOCUS - 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.
$621,658$33,300FH 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.
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$2,935,131TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Revenue$620,300TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses$4,569,448TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying Activities0LobbyingActivitiesInd
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 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl Stmt0IndependentAuditFinclStmtInd
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 With Officer Ent0BusinessRlnWithOfficerEntInd
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 Document24IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee17EmployeeCnt
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
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 Policy0WhistleblowerPolicyInd
Document Retention Policy0DocumentRetentionPolicyInd
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 Line1959 E Walnut Street No 220AddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91106ZIPCd

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
Chair1.00Yes (X)Yes (X)$0$0$0
Stacey Lane
Vice Chair1.00Yes (X)Yes (X)$0$0$0
Seth Baum
Secretary/Treasurer1.00Yes (X)Yes (X)$0$0$0
Katherine Wilemon
CEO/Board Member40.00Yes (X)Yes (X)$300,000$0$11,075
Barry Brooks
Board Member1.00Yes (X)$0$0$0
Joshua Knowles
Board Member1.00Yes (X)$0$0$0
Dan Rader
Board Member1.00Yes (X)$0$0$0
Christian Jacobs
Board Member1.00Yes (X)$0$0$0
Maria Sophocles
Board Member1.00Yes (X)$0$0$0
Catherine Ahmed
Director or Outreach40.00$103,769$0$0Yes (X)
Stacey Stanley
Executive Assistant40.00$104,587$0$8,260Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$508,356TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$19,335TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K3IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp

Contractor Name ContractorName

FieldValueIRS element (for citing)
PersonDavid ZuzickPersonNm

Contractor Address ContractorAddress

US Address USAddress

FieldValueIRS element (for citing)
Address Line1959 East Walnut StreetAddressLine1Txt
CityPasadenaCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91106ZIPCd
FieldValueIRS element (for citing)
ServicesConsultingServicesDesc
Compensation$338,391CompensationAmt
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K1CntrctRcvdGreaterThan100KCnt
All Other Contributions$3,499,484AllOtherContributionsAmt
Total Contributions$3,499,484TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
Contract fees900099$1,402,000$1,402,000
Conference fees900099$18,300$18,300
FieldValueIRS element (for citing)
Total Program Service Revenue$1,420,300TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$3,464TotalRevenueColumnAmt
Exclusion$3,464ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$10,089SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$0SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$10,089SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$10,089TotalRevenueColumnAmt
Exclusion$10,089ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescOther incomeDesc
Business900099BusinessCd
Total Revenue Column$6,675TotalRevenueColumnAmt
Related Or Exempt Func Income$6,675RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$6,675OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$4,940,012TotalRevenueColumnAmt
Related Or Exempt Func Income$1,426,975RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$13,553ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$311,075TotalAmt
Program Services$290,458ProgramServicesAmt
Management And General$11,814ManagementAndGeneralAmt
Fundraising$8,803FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$726,355TotalAmt
Program Services$678,213ProgramServicesAmt
Management And General$27,588ManagementAndGeneralAmt
Fundraising$20,554FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$42,294TotalAmt
Program Services$39,491ProgramServicesAmt
Management And General$1,606ManagementAndGeneralAmt
Fundraising$1,197FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$154,346TotalAmt
Program Services$144,116ProgramServicesAmt
Management And General$5,862ManagementAndGeneralAmt
Fundraising$4,368FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$88,366TotalAmt
Program Services$82,181ProgramServicesAmt
Management And General$1,767ManagementAndGeneralAmt
Fundraising$4,418FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$65,820TotalAmt
Program Services$61,213ProgramServicesAmt
Management And General$1,316ManagementAndGeneralAmt
Fundraising$3,291FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$604,038TotalAmt
Program Services$563,851ProgramServicesAmt
Management And General$20,076ManagementAndGeneralAmt
Fundraising$20,111FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$372,885TotalAmt
Program Services$341,393ProgramServicesAmt
Management And General$24,503ManagementAndGeneralAmt
Fundraising$6,989FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$135,304TotalAmt
Program Services$63,749ProgramServicesAmt
Management And General$69,330ManagementAndGeneralAmt
Fundraising$2,225FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$130,572TotalAmt
Program Services$121,432ProgramServicesAmt
Management And General$2,611ManagementAndGeneralAmt
Fundraising$6,529FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$60,611TotalAmt
Program Services$51,080ProgramServicesAmt
Management And General$8,686ManagementAndGeneralAmt
Fundraising$845FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$194,242TotalAmt
Program Services$160,990ProgramServicesAmt
Management And General$29,218ManagementAndGeneralAmt
Fundraising$4,034FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$14,347TotalAmt
Program Services$6,008ProgramServicesAmt
Management And General$7,844ManagementAndGeneralAmt
Fundraising$495FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$5,148TotalAmt
Program Services$4,215ProgramServicesAmt
Management And General$933ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$2,562TotalAmt
Program Services$1,888ProgramServicesAmt
Management And General$674ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
Data & Research$1,719,125$1,598,786$34,383$85,956
Events$322,530$309,131$5,001$8,398
Human resource$84,586$49,976$32$34,578
Memberships/subscriptio$2,605$1,277$1,328

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$385TotalAmt
Management And General$385ManagementAndGeneralAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$5,037,196TotalAmt
Program Services$4,569,448ProgramServicesAmt
Management And General$254,957ManagementAndGeneralAmt
Fundraising$212,791FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,352,119BOYAmt
EOY$447,147EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$5,058,937BOYAmt
EOY$3,662,401EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$486,000BOYAmt
EOY$1,550,000EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$50,680BOYAmt
EOY$679,449EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
EOY$5,362EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$24,272LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$12,804LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$16,616BOYAmt
EOY$11,468EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
EOY$530,978EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$5,777BOYAmt
EOY$5,777EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$6,970,129BOYAmt
EOY$6,892,582EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$179,265BOYAmt
EOY$180,835EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$179,265BOYAmt
EOY$180,835EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
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Form990 Schedule A Part VI Form990ScheduleAPartVIGrp (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Part II, Section C, line 17a:THE FOUNDATION SATISFIES THE 10% FACTS AND CIRCUMSTANCES TEST TO BE A PUBLICLY-SUPPORTED 501(c)(3) ORGANIZATION. (1) Summary and Conclusion. The FH Foundation qualifies as a publicly supported 501(c)(3) charitable and educational nonprofit organization. It received greater than 10% of its support from public sources, it is organized and operated as a publicly-supported charitable entity, and, explained in detail below, it satisfies the facts and circumstances test as set forth in the Regulations. (2) The FH Foundation serves a critical public purpose. It saves lives by informing doctors, assisting public health officials, and educating the general public about Familial Hypercholesterolemia ("FH"), an inherited disorder that leads to aggressive and premature cardiovascular disease, if it's not properly diagnosed and treated. The Foundation works to save the lives of people with a life-threatening type of high cholesterol called Familial Hypercholesterolemia (referred to as "FH"). Heart disease is the number one cause of morbidity and mortality in the U.S., and is linked to high cholesterol, affecting 72 million Americans. FH is a genetic condition that causes high cholesterol and early heart disease. People with FH who are diagnosed can be helped if FH is diagnosed early and treated. FH is as prevalent as Type 1 diabetes and is twenty times more prevalent than Cystic Fibrosis. Approximately 1 out of every 250 people, equally at least 1.3 million people in the United States and about 30 million people worldwide have Familial Hypercholesterolemia. If untreated, a man with FH has a 50% chance of having a heart attack before the age of 50 and a woman with FH has a 30% chance of having a heart attack before the age of 60. Children who have inherited FH from two parents, most often do not live to 20 years old without the appropriate care. Effective therapies exist to manage the condition, but FH must be diagnosed and treated appropriately from childhood. Tragically, 90% of the people with FH are never accurately diagnosed or appropriately managed. As recently as 2011, a study showed that fewer than 30% of the cardiologists were able to diagnose a case of FH. That is why people with FH and doctors who understand FH created the FH Foundation, and provided its initial funding. The FH Foundation was incorporated in late 2011. The organization's mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. As noted, if left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds. In just seven years, the FH Foundation has made an astounding amount of progress in increasing FH awareness, amassing global information about patients, and bringing together doctors, patients, public health officials, and government leaders to discover and disseminate information about diagnosis and treatment options. (3) As part of its educational mission, the Foundation regularly publishes medical and scientific information that is widely used by physicians and is a key free resource for patients with FH. - The FH Foundation has led the publication of 17 peer-reviewed articles in scientific journals since 2014, including four in 2017. It is the leader in advancing scientific and medical understanding of FH. - The FH Foundation publishes medical information in 11 different languages, providing doctors and patients with information essential to understanding and treating FH. - The Foundation convenes the annual FH Global Summit, which produces medical and scientific information to educate doctors and other medical professionals about FH. It is the only educational conference dedicated to solving global challenges in the care and treatment of familial hypercholesterolemia through a multi-stakeholder and interdisciplinary approach. It brings together speakers and panelists who are experts in FH, genomics, precision medicine, alongside leading healthcare practitioners, individuals with FH and industry. Specifically, the 2017 FH Global Summit produced new significant information about how to detect and care for FH across diverse populations, and the need for professionals in precision medicine and public health. - The FH Foundation has had more than 200 articles about FH appear in the media, including Wall Street Journal, US News and World Report, Medscape, Women's Health, and more, reaching a potential audience of more than 200 million people. (4) The Foundation participates in and sponsors programs and efforts by members of the public having special knowledge or expertise, public officials, or civic or community leaders. - The Foundation works with officials from the U.S. Centers for Disease Control and Prevention, the National Institutes of Health, the National Heart, Lung, and Blood Institute, the Centers for Medicare and Medicaid Services, the Food and Drug Administration (FDA), and national/international organizations like the World Health Organization. - The Foundation's President, Katherine Wilemon, works closely with key government health officials, including with the head of genomics at the Centers for Disease Control and Prevention and with the National Academies- Genomic Public Health Action Collaborative Working Group. - A bedrock of the FH Foundation's work has been the establishment of a national familial hypercholesterolemia CASCADE FH Registry. Launched in September 2013, by June 2016 over 5,000 individuals have been entered in the Registry at 37 clinical sites across the United States at many major academic medical institutions. As a patient centric organization, the Foundation designed the CASCADE FH Registry to include physician entered and patient entered data with learnings and data returned to both stakeholder groups. - Senior officials at both the CDC and National Institutes of Health (NIH) - National Heart, Lung and Blood Institute (NHLBI) have been consulted on how to sustain and grow the CASCADE FH Registry because it is of such value to public health and the clinical research community. The Registry by design will advance the scientific understanding of FH, increase the rate of FH diagnosis, improve the quality of care for individuals living with FH, and enable additional education of the public and health officials about FH and the need for additional research and information about effective care. - The FH Foundation succeeded in having FH classified within the International Classification of Diseases (the "ICD"), following three years of focused effort. This was a great advance for the general public as the ICD holds critical information about epidemiology, managing health, and treating conditions and is used by healthcare professionals to code and identify health conditions. This will bring much-needed visibility to the FH diagnosed population. Public health workers and insurers use the recording of ICD codes to see trends in health, to track morbidity and mortality and to classify conditions and determine reimbursement. As of December 2017, 191,264 individuals had been diagnosed using the FH diagnosis code (E78.01). - The FH Foundation created the FH Specialists Network identifying over 450 healthcare providers across 20 countries who specialize in FH. The FH Foundation provides educational materials to these clinicians to provide to their patients. The FH Foundation's Specialist Network is easily assessible on the FH Foundation's website. - Twelve FH clinical experts from across the country serve on the FH Foundation Scientific Advisory Board. - In addition to a number of community volunteers, ninety people have been trained to be FH Advocates who raise awareness by sharing their FH stories, support others through their own journeys, and inform the work of the FH Foundation to ensure the Foundation is addressing what matters most to FH patients. FH Advocates educate their elected representatives and medical professionals to help them to better understand FH. The FH Advocates educate the public directly by participating in health fairs, speaking at service clubs and their workplaces, and speaking directly with newly diagnosed patients. The FH Foundation helps to share their stories via its website, social media, and news media outreach. FH Advocates also reach out to their network of family and friends to raise awareness and funding for the FH Foundation. (5) The Foundation provides continuous and definitive programs and
direct services to the general public to accomplishits charitable work. - The Foundation is the only research and advocacy organization dedicated to increasing scientific understanding and public awareness of this condition. It operates a website with extensive information and distributes educational materials about FH. - The FH Foundation's CASCADE FH Registry provides information available to the general public about issues regarding care, medical needs, observational and implementation research studies that are being conducted, and a research study that aims to understand the willingness for individuals with a clinical diagnosis of FH and their family members to undergo confirmatory genetic testing. - The FH Foundation's national CASCADE FH Registry and its related global Patient Portal provide comprehensive longitudinal data that fills gaps in FH diagnosis and treatment, including disparities in care. The Registry's data is available to researchers, public health officials (CDC, FDA), clinicians, patients, and other decision makers. The Foundation also disseminates this data in presentations to medical conferences, in the news media, and on social media. - The FH Foundation offers financial support to patients and to parents whose children have FH to attend the annual FH Global Summit so they can learn more about the disease, medical advances, and treatment options. - The Foundation provides families with the essential service of helping patients find physicians who understand and specialize in the treatment of FH. - The Foundation works with payers and providers directly to educate them about diagnosis and treatment of FH. - The Foundation provides the public with online and print tools to help patients navigate their own diagnosis, treatment, and access issues. - The Foundation hosts in-person events where FH families connect with each other, the work of the FH Foundation, and directly with FH medical experts. When needed, it financially supports the participation of individuals in these in-person events. It also supports the participation of its FH Advocates in medical meetings. It manages an online discussion group where people can go for reliable information about FH diagnosis and management and connect with each other. It answers questions by email and phone from people who contact it directly. - The Foundation maintains a list of clinical research studies on the website that is searchable so that patients or parents with children with FH can find medical resources or research studies. - The Foundation provides regular email updates on clinical trial research. - In 2012, the FH Foundation created the National FH Awareness Day as September 24. Today, this is a worldwide event, adopted by individuals and organizations. Its month-long campaign leading up to FH Awareness Day on September 24, 2017, reached an audience of 32 million people through the world. - With its FH advocates, it has succeeded in getting governors in California, Michigan, Ohio, Kansas, New York and Texas to have FH Awareness Day in their states. It is currently working on getting Georgia added to this list. - The FH Foundation engages in educational and outreach work to advance the awareness and interests of the general public about FH. With its educational outreach, FH Foundation has - Over 6,600 people following it on Twitter Over 1,000 people in an online Facebook discussion group from 54 countries around the globe Over 12,000 Likes" on Facebook and 6,600 follow it on Twitter Over 450 FH specialists featured in its Global Specialist Network Over 300 people attending the FH Global Summit each year Over 90 volunteer FH Advocates for Awareness Over 5,000 enrolled in CASCADE FH Registry Clinical Sites Over 500 enrolled in CASCADE FH Registry Patient Portal Over 4,500 people receive its newsletter In-person events for FH families held in Boston, Rochester MN, Portland OR, Dallas/Ft Worth, Northern CA, Southern CA, Miami, Dallas, Pasadena (x2), Arlington (x3),Rockville, Philadelphia, Maine, Kansas City. (6) The Foundation began by raising financial support from among the few patients and health-care professionals who knew about Familial Hypercholesterolemia. The Foundation is organized and operated to attract new and additional public or governmental support on a continuous basis. - In its initial years of existence, the FH Foundation was able to generate financial support from among the small group of people aware of FH and deemed most likely to provide seed money. It received an amount sufficient to enable it to begin its charitable activities and undertake an expanded solicitation program. In those early years, by necessity it focused on building a credible reputation so that it can be successful in its research and educational efforts. - Through initial successful educational efforts, the Foundation increased awareness and knowledge about FH among doctors, public health officials, patients, families, and policy-makers. It later began receiving support from the larger group of people learning about, or directly affected by, the disease. - Given that the Foundation's mission relates to a specific group of people affected by or concerned with the disease, and with the relatively short time the Foundation has been in existence, its fundraising efforts have been successful. - In 2016, the Foundation was able to hire a Vice President of Fundraising to develop/implement a plan to engage potential donors and sponsors in contributing to the FH Foundation. Efforts and success included: Corporate Advisory Council - $250,000 FH Global Summit - requested sponsorships from 21 prospects, raised $466,000 FH Community in Action - $310,000 Peer-to-peer Fundraiser "Care to be Aware" 70 donors - total $3,300 Email campaigns - total raised $12,500 Mother's Day Fundraising Appeal - solicitation sent to 3,000 Father's Day Fundraising Appeal - sent to 3,000 Matching Gift 1 - sent to 3,500 Matching Gift 2 - sent to 3,500 Matching Gift 3- sent to 3,500 Matching Gift 4 - sent to 3,500 Matching Gift 5 - sent to 3,500 Matching gift from one family totally $30,000 A fundraising consultant was hired in 2017 to assess and improve upon the success of the initial fundraising efforts. The results of that assessment and implementation of the strategies resulted in: The FH Board of Directors was solicited; all but one member of the Board made a cash contribution. The Foundation received $756,000 in corporate support. The Foundation requested support from 25 companies on the Corporate Advisory Council. The Foundation solicited 40 prospective sponsors to support the FH Global Summit. The Foundation solicited six companies involved in the Foundation's Community in Action. The Foundation engaged in multi-channel direct marketing, raising $8,300 for the: End of Year Campaign. The Foundation established Giving Tuesday via its Social Media. The Foundation has sent six emails to 4,500 prospects each. The Foundation has sent a solicitation letter to 665 donors. The Foundation has established a fundraising effort called the Race for FH, which has raised $87,500, and increased those donors from 450 to 900. The Foundation has established Memorial and Tribute Gifts that have raised $13,855. Additional Gifts from individuals totaling $14,910. Received a major gift of $100,000 that was used to provide a $25,000 match to the Race for FH. Following up on a Board member suggestion, a FH patient was solicited who contributed $10,000 to the FH Foundation. Received a subaward research grant through the University of Rochester that provided two years of funding to participate in the research trial. - The Foundation now maintains a continuous and significant program for solicitation of funds from the general public. Its activities are designed to attract support from interested segments of the general public. The Foundation expects its public support to increase in 2018. (7) The Foundation's governing body represents the broad interests of
the public, rather than the personal or private interestsof a limited number of donors. Its Directors represent a broad cross-section of the views and interests of the community affected by FH, and have special knowledge and expertise about FH disease. - The Board of Directors consists of approximately 50% patients and 50% clinical experts. Six members of the board are physicians who treat FH patients and/or conduct FH clinical research studies without benefiting financially from the FH Foundation. - It has leaders in medicine as well as those who have played key roles in the public health fields advocating for others, such as its Chairman Dr. Bill Neal. Dr. Neal has been widely recognized for his public health leadership on behalf of children nationally and especially in his home state of West Virginia. Its Chief Scientific Officer, Dr. Dan Rader, has long worked with the NIH and in his position at the University of Pennsylvania on behalf of those born with the most devastating genetic conditions. - A biosketch of each of the board members is below. Katherine Wilemon Founder and Chief Executive Officer, is an individual with FH. Katherine Wilemon conceived the FH Foundation as a partnership between physician scientists and those living with FH. Katherine's own journey to receive an accurate diagnosis and appropriate care for FH urged her to devote her life to this cause. After having a heart attack at 38, Katherine set out to raise awareness of FH and save lives. As noted above, Katherine Wilemon works directly with the head of genomics at the CDC. Since 2016 Katherine Wilemon has been a member of the National Academies - Genomic Public Health Action Collaborative Working Group. In 2017, she was asked to lead the cascade screening work group focused on all three Tier 1 Applications- HBOC, Lynch, and FH William A. Neal, MD Chairman of the Board William A. Neal, MD, a native of Huntington, WV, earned his undergraduate degree from Xavier University in Cincinnati, Ohio in 1962. His medical degree was awarded by West Virginia University in 1966, where he was the first recipient of the Edward J. Van Liere Award for medical student research. From 1985 to 1998 he served as Chair of the WVU Department of Pediatrics. Dr. Neal was instrumental in the conceptualization and development of WVU Children's Hospital and served as its first Medical Director. Dr. Neal is currently James H. Walker Professor of Preventive Cardiology in the Department of Pediatrics at West Virginia University. Upon graduation from medical school, Dr. Neal continued training as a rotating intern at the Milwaukee County General Hospital, Marquette University, 1966-'67. He was then commissioned in the U.S. Navy, where after graduation from the Naval Aerospace Medical Institute, he was assigned as Flight Surgeon aboard the USS Constellation. He made two combat tours to Vietnam. Postgraduate education in his chosen specialty of pediatric cardiology was accomplished at the University of Minnesota 1970-74. Dr. Neal then joined the faculty at WVU. He was awarded Emeritus status July 1, 2014 after forty years of service to the University and State. Neal's clinical career at WVU focused on development and regionalization of newborn intensive care, establishment of a statewide system of outreach clinics in pediatric cardiology and founding of the Coronary Artery Risk Detection in Appalachian Communities (CARDIAC) Project. CARDIAC has provided risk factor surveillance, intervention, and research for over 150,000 school-age children from every West Virginia Community over the past sixteen years. As the largest comprehensive accumulation of health status data on children in the nation it has strongly influenced policy guidelines of the American Academy of Pediatrics regarding blood cholesterol screening and treatment for children at risk for premature heart disease and diabetes. He currently serves on the Board of Directors of the Familial Hypercholesterolemia Foundation. He was named Distinguished Alumnus of the WVU School of Medicine in 2006. Stacey Lane, JD, MBE Vice Chair Stacey Lane is a graduate of the University of Pennsylvania and received her J.D. from Fordham University School of Law. Additionally, she received a Master's Degree in Bioethics from Penn, with a concentration in public policy and regulation of new medical technologies. In addition to her work with the FH Foundation, Stacey is a member of the Board of Trustees of Montefiore Hospital in the Bronx, and is working on several bioethics initiatives in the New York area. She is also on the Advisory Council of the Hastings Center and is a member of the Advisory Board of the Bioethics Masters Program at Columbia University. Having been diagnosed with FH when she was 8, Stacey was originally treated at Rockefeller University in New York in the 1960s in some of the first cholesterol studies and has been monitored consistently since that time. She is the mother of three sons, two of whom also have FH. Seth J. Baum, MD Secretary Treasurer Dr. Seth J. Baum, a graduate of Columbia College of Physicians and Surgeons, completed training in Internal Medicine, Cardiology, Interventional Cardiology, and Electrophysiology. He has directed the Cardiac Catheterization laboratories at both Boca Raton and North Ridge hospitals, where he also founded the Electrophysiology laboratories. Dr. Baum has worked extensively in Integrative Cardiology, directing the Harvard affiliated Mind/Body Medicine Institute, Boca Raton division, lecturing nationally to physicians and the lay public, and teaching a graduate level course in Integrative Medicine at Florida Atlantic University. In 2002, he founded VitalRemedyMD, a conservative, scientifically-based nutritional supplement company, and later formulated VitalOils1000, the first omega-3 soft gel to contain 1,000 mg of combined EPA+DHA. In 2002, Dr. Baum also established The Foundation for Preventive and Integrative Medicine, a non-profit entity devoted to charity, education and research in preventive medicine. Dr. Baum is a Founding Physician/Scientist Member of the Society for Cardiovascular CT and is board certified in Cardiovascular CT. He lectures extensively in the fields of Lipidology, Preventive cardiology, and Integrative Cardiology. In July of 2011, Dr. Baum was appointed Director of Women's Preventive Cardiology at The Christine E. Lynn Women's Health and Wellness Center, Boca Raton Regional Hospital. His responsibilities include both developing and overseeing this program. He is the Treasurer of the American Society for Preventive Cardiology (ASPC). He has written numerous articles as well as two books, The Total Guide to a Healthy Heart, and Age Strong, Live Long; Lessons from my Patients. In 2013 he was awarded the Cleveland Heart Lab's annual "Heart Award" for his lifelong dedication to Preventive Medicine. Dr. Baum has been a frequent guest on radio and TV shows including National Public Radio, Voice of America, CBN, Fox, and MSNBC. On faculty at FAU medical school and the University of Miami, Miller School of Medicine, Dr. Baum has a practice in Boca Raton, Florida that is devoted predominantly to Clinical Lipidology - he is board certified by the American Board of Clinical Lipidology - and Cardiovascular Prevention. Dr. Baum also runs the only LDL-Apheresis program in southeast Florida. Barry A. Brooks, JD Board Member Barry Brooks is a partner of Paul Hastings, LLP, an international law firm with approximately 1,000 attorneys, and has practiced with that firm for 35 years, starting in the Los Angeles and Santa Monica, California offices, and moving to New York City in 1990. Mr. Brooks is currently the Chair the New York Office of the Firm - which at 275 attorneys is the Firm's largest. Mr. Brooks represents parties in a variety of complex transactions and is the chair of the firm's New York office and a partner in its Corporate Department. He represents parties in a broad range of public and private domestic and international mergers and acquisitions, private equity, corporate finance and joint venture transactions. Mr. Brooks represents private equity funds, hedge funds and other private investment funds and institutional investors and private and public operating companies in various industries. Mr. Brooks also advises public companies and their boards and committees in connection with corporate responsibility, fiduciary duty, disclosure and executive employment matters. Mr. Brooks is a member of the State Bars of New York and California and of the American Bar Association. Mr. Brooks received his A.B. degree, summa cum laude, Phi Beta Kappa, in 1978 from the University of California at Los Angeles and his J.D. degree, cum laude, in 1981 from Harvard Law School, cum laude. Allison Jamison
Board MemberAllison serves the FH Foundation as a volunteer FH Advocate for Awareness and as a Board Member. She earned her BS in Commerce from the University of Virginia, and her MBA from the University of Texas at Austin. She currently works as the director of recruitment and marketing for the Daytime MBA and MMS programs at Duke Fuqua School of business. Joshua Knowles, MD, PhD Chief Medical Advisor Dr. Joshua W. Knowles is an Attending Physician in the Stanford Center for Inherited Cardiovascular Disease where he treats patients with Familial Hypercholesterolemia (FH). He has had a longstanding interest in the genetic (inherited) basis of cardiovascular disease and in particular the use modern genetic techniques to improve its ability to diagnose and treat patients at risk of heart disease. Josh completed his MD-PhD at the University of North Carolina at Chapel Hill where he worked in the lab of Prof. Nobuyo Maeda and Nobel Laureate Oliver Smithies studying animal models of atherosclerosis and lipid metabolism. He then completed his Internal Medicine residency and Cardiovascular Medicine fellowship training at Stanford University working in the lab of Dr. Thomas Quertermous. He has published over 35 papers focused on heart disease with research projects currently funded by the National Institutes of Health and the American Heart Association. He is particularly excited to be involved with the FH Foundation in their mission to increase awareness of this condition, identify patients with FH, encourage screening of family members of those with FH and facilitate treatment of FH patients. He views FH as a "winnable battle" because once FH is identified, it can usually be treated quite effectively. Daniel J. Rader, MD Chief Scientific Advisor Dr. Rader is the Seymour Gray Professor of Molecular Medicine at the Perelman School of Medicine at the University of Pennsylvania. He serves as the Chair of the Department of Genetics as well as the Chief of the Division of Translational Medicine and Human Genetics in the Department of Medicine. He is also Associate Director of Penn's Institute for Translational Medicine and Therapeutics. Dr. Rader's research focuses on the human genetics and functional genomics of lipoprotein metabolism and atherosclerosis, as well as the translational implications for novel therapeutic approaches. He led the scientific and clinical development of a first-in-class inhibitor of microsomal transfer protein for the treatment of severe hypercholesterolemia, which is now on the market. He has a particular interest in HDL metabolism and function, and novel approaches to targeting HDL metabolism and reverse cholesterol transport in the treatment, prevention, and regression of atherosclerosis. Dr. Rader trained in internal medicine at Yale-New Haven Hospital and in human genetics and physiology of lipoprotein metabolism at the National Institutes of Health. He has been on the Penn faculty since 1994. Dr. Rader is a member of the American Society of Clinical Investigation, the Association of American Physicians, and the Institute of Medicine of the National Academy of Sciences. He is a recipient of several awards including the Clinical Research Award from the American Heart Association. Michael Shapiro, DO Board Member Dr. Shapiro is director of OHSU's Cardiac MRI an CT program and is board certified in Cardiology, Cardiovascular CT (imaging), and Lipidology (cholesterol). His clinical expertise includes: - Genetic and acquired disorders of cholesterol and triglycerides - Atherosclerosis Imaging (Non-invasive imaging of the heart arteries) - Genetic predisposition to early heart attacks - Cardiovascular risk assessment in apparently healthy individuals - Clinical trials of new cholesterol and triglyceride lowering drugs Maria Sophocles, MD Board Member Dr. Maria Sophocles is a Board-certified OB/GYN who has been in private practice since 1995. Dr. Sophocles completed her residency training at Johns Hopkins Hospital in Baltimore, Maryland, then worked as an obstetrician/gyne- cologist in medical practices in Bryn Mawr, PA, and Summit, NJ. Subsequently, Dr. Sophocles spent several years living and working in Switzerland and Italy with her family, where she became uent in French and Italian. At the Universitats-Frauenklinik in Basel, Switzerland, she conducted and coordinated a multi-centered research trial through an NIH grant, while sharing an OB/GYN practice with the department chairman. While living in Italy with her family from 2004-2007, Dr. Sophocles was a Visiting Physician at Ospedale Sant'Anna in Como, Italy, where she served as a clinical advisor to members of the Department of Obstetrics and Gynecology. In addition to her clinical activities, Dr. Sophocles worked as a Travel Writer for Fodors Inc and researched and edited Fodors' Italy Guidebook. She is currently the Medical Director of Women's Healthcare of Princeton, which she founded, a progressive medical practice focusing on needs of menopausal and adolescent women. She is also an attending physician at the University Hospital of Princeton at Plainsboro where she performs minimally invasive Gynecologic surgery. She helped to develop New Jersey's rst stem cell repository and has researched the detection of fetal genetic abnormalities in maternal blood in the rst trimester. She speaks nationally and internationally on women's health topics and is currently researching the effectiveness of CO2 laser therapy to treat vaginal dryness, bladder dysfunction and sexual pain issues. Dr. Sophocles' professional interests include female sexual dysfunction, menopause, and international women's health initiatives. She is a pioneer in the use of CO2 lasers for the treatment of vaginal dryness, painful intercourse, lichen sclerosis, and chronic UTIs, and has performed more laser treatments than any other physician on the east coast. She is committed to helping women to live a healthy and satisfying sexual life at any age.

Schedule B IRS990ScheduleB

Schedule D IRS990ScheduleD

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$12,496OtherCostOrOtherBasisAmt
Depreciation$5,235DepreciationAmt
Book Value$7,261BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$11,776OtherCostOrOtherBasisAmt
Depreciation$7,569DepreciationAmt
Book Value$4,207BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$11,468TotalBookValueLandBuildingsAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$4,958,079TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$18,067NetUnrealizedGainsInvstAmt
Revenue Not Reported$18,067RevenueNotReportedAmt
Revenue Subtotal$4,940,012RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$4,940,012TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$5,037,196TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$5,037,196ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$5,037,196TotalExpensesPerForm990Amt

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 Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp

FieldValueIRS element (for citing)
PersonKatherine WilemonPersonNm
TitleCEO/Board MemberTitleTxt
Base Compensation Filing Org$300,000BaseCompensationFilingOrgAmt
Compensation Based On Rltd Orgs$0CompensationBasedOnRltdOrgsAmt
Bonus Filing Organization$0BonusFilingOrganizationAmount
Bonus Related Organizations$0BonusRelatedOrganizationsAmt
Other Compensation Filing Org$0OtherCompensationFilingOrgAmt
Other Compensation Rltd Orgs$0OtherCompensationRltdOrgsAmt
Deferred Compensation Flng Org$0DeferredCompensationFlngOrgAmt
Deferred Comp Rltd Orgs$0DeferredCompRltdOrgsAmt
Nontaxable Benefits Filing Org$11,075NontaxableBenefitsFilingOrgAmt
Nontaxable Benefits Rltd Orgs$0NontaxableBenefitsRltdOrgsAmt
Total Compensation Filing Org$311,075TotalCompensationFilingOrgAmt
Total Compensation Rltd Orgs$0TotalCompensationRltdOrgsAmt
Comp Report Prior990 Filing Org$0CompReportPrior990FilingOrgAmt
Comp Report Prior990 Rltd Orgs$0CompReportPrior990RltdOrgsAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 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.
Form 990, Part IX, line 11gConsultants/temporary staff: Program service expenses 563,851. Management and general expenses 20,076. Fundraising expenses 20,111. Total expenses 604,038.

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