THE FAMILIAL HYPERCHOLESTEROLEMIA FOUNDATION: Form 990, tax year 2019
View the entire original 990 at ProPublica ↗
- Organization
- THE FAMILIAL HYPERCHOLESTEROLEMIA FOUNDATION (EIN 45-4597425)
- Tax period
- 2019-01-01 to 2019-12-31
- Filed
- 2020-08-28
- IRS object ID
- 202042419349300944
- Schema version
- 2019v5.1
- 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2020-08-28T17:50:56-05:00 | ReturnTs |
| Tax Period End | 2019-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 954557617 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Harrington Group CPAs LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 234 East Colorado Blvd Suite M150 | AddressLine1Txt |
| City | Pasadena | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 91101 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2019-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 454597425 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | The Familial Hypercholesterolemia | BusinessNameLine1Txt |
| Business Name Line2 | Foundation | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | FAMI | BusinessNameControlTxt |
| Phone | 6265834674 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 680 E Colorado Blvd No 180 | AddressLine1Txt |
| City | Pasadena | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 91101 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Katherine Wilemon | PersonNm |
| Person Title | CEO | PersonTitleTxt |
| Phone | 6265834674 | PhoneNum |
| Signature | 2020-08-28 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Tonetta L Conner | PreparerPersonNm |
| PTIN | P01775198 | PTIN |
| Phone | 6264036801 | PhoneNum |
Filing Security Information FilingSecurityInformation
IP Address IPAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| I Pv4 Address | 209.133.35.227 | IPv4AddressTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IP | 2020-08-28 | IPDt |
| IP Tm | 15:50:31 | IPTm |
| IP Timezone | PD | IPTimezoneCd |
| Filing License Type | P | FilingLicenseTypeCd |
| At Submission Creation Device Id | 623C1A5311ADEA2399CFD4C6AFFEBCC78E106A85 | AtSubmissionCreationDeviceId |
| At Submission Filing Device Id | 0B4F3B71C2EC911E577D967EDC65E3E555B204AC | AtSubmissionFilingDeviceId |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2019 | TaxYr |
| Build TS | 2020-11-06 18:47:13Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Change | Yes (X) | AddressChangeInd |
Doing Business As Name DoingBusinessAsName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FH Foundation | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Katherine Wilemon | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 680 E Colorado Blvd No 180 | AddressLine1Txt |
| City | Pasadena | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 91101 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $3,508,495 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | www.thefhfoundation.org | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2012 | FormationYr |
| Legal Domicile State | CA | LegalDomicileStateCd |
| Activity Or Mission | The FH Foundation is a patient-centered nonprofit organization dedicated to research, | ActivityOrMissionDesc |
| Voting Members Governing Body | 10 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 9 | VotingMembersIndependentCnt |
| Total Employee | 16 | TotalEmployeeCnt |
| Total Volunteers | 9 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $1,820,693 | PYContributionsGrantsAmt |
| CY Contributions Grants | $1,848,898 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $1,245,585 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $1,569,593 | CYProgramServiceRevenueAmt |
| PY Investment Income | $32,385 | PYInvestmentIncomeAmt |
| CY Investment Income | $32,742 | CYInvestmentIncomeAmt |
| PY Other Revenue | $149 | PYOtherRevenueAmt |
| CY Other Revenue | $8,243 | CYOtherRevenueAmt |
| PY Total Revenue | $3,098,812 | PYTotalRevenueAmt |
| CY Total Revenue | $3,459,476 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $0 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $0 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,781,345 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $1,873,673 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $393,097 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $3,904,441 | PYOtherExpensesAmt |
| CY Other Expenses | $3,138,794 | CYOtherExpensesAmt |
| PY Total Expenses | $5,685,786 | PYTotalExpensesAmt |
| CY Total Expenses | $5,012,467 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$2,586,974 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$1,552,991 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $5,284,854 | TotalAssetsBOYAmt |
| Total Assets EOY | $3,585,638 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $463,353 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $219,414 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $4,821,501 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $3,366,224 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | The 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. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $1,275,946 | ExpenseAmt |
| Desc | CASCADE 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 Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,103,130 | ExpenseAmt |
| Revenue | $1,499,000 | RevenueAmt |
| Desc | FIND 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. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $632,307 | ExpenseAmt |
| Desc | FOCUS - 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)
| ExpenseExpenseAmt | DescDesc | RevenueRevenueAmt |
|---|---|---|
| $554,775 | FH 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. | |
| $477,427 | FH 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." | |
| $131,778 | Global 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. | $70,593 |
| $10,460 | The 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. | |
| $44,357 | The FH Foundation conducted other smaller program activities throughout the year. |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $1,218,797 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Revenue | $70,593 | TotalOtherProgSrvcRevenueAmt |
| Total Program Service Expenses | $4,230,180 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | 0 | ForeignActivitiesInd |
| More Than5000 K To Org | 0 | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | 0 | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | 0 | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | 0 | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 17 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 16 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 10 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 9 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | 0 | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | The Organization | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 6265834674 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 680 E Colorado Blvd No 180 | AddressLine1Txt |
| City | Pasadena | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 91101 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (15 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|
| William Neal | |||||||
| Chair | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Stacey Lane | |||||||
| Chair Elect | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Michael Shapiro | |||||||
| Secretary | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Seth Baum | |||||||
| Treasurer (Term end May) | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Mary McGowan | |||||||
| Interim Treasurer (Term start May) | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| Katherine Wilemon | |||||||
| CEO/Board Member | 40.00 | Yes (X) | Yes (X) | $328,029 | $0 | $10,336 | |
| Barry Brooks | |||||||
| Board Member | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| Joshua Knowles | |||||||
| Board Member | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| Dan Rader | |||||||
| Board Member | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| Maria Sophocles | |||||||
| Board Member | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| Allison Jamison | |||||||
| Board Member | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| A Sheldon | |||||||
| VP of Marketing | 40.00 | $168,736 | $0 | $7,373 | Yes (X) | ||
| Catherine Ahmed | |||||||
| VP of Policy | 40.00 | $156,478 | $0 | $0 | Yes (X) | ||
| S Gidding MD | |||||||
| CMedO (Term end Dec.) | 40.00 | $143,716 | $0 | $9,698 | Yes (X) | ||
| E Fennell | |||||||
| Development Director | 40.00 | $109,654 | $0 | $6,772 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $906,613 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $34,179 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 5 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (5 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| Atomo | |||||
| 1603 Falcon Ledge Dr | Austin | TX | 78746 | Consulting | $710,468 |
| DCRI | |||||
| PO Box 602651 | Charlotte | NC | 28260 | Data Management | $581,950 |
| Zilker Technology LLC | |||||
| 200 East 6th Street Ste 201 | Austin | TX | 78701 | Website and S.E.O. | $145,200 |
| Emory Conference Center Hotel | |||||
| 1615 Clifton Rd | Atlanta | GA | 30329 | Summit 2019 Venue | $113,514 |
| McAllister and Quinn LLC | |||||
| 1030 15th St NW Suite 590W | Washington | DC | 20005 | Washington D.C. Advocates | $104,300 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 5 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $1,848,898 | AllOtherContributionsAmt |
| Total Contributions | $1,848,898 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| Contract fees | 900099 | $1,513,161 | $1,513,161 |
| Conference fees | 900099 | $56,432 | $56,432 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $1,569,593 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $6,761 | TotalRevenueColumnAmt |
| Exclusion | $6,761 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $75,000 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $49,019 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $25,981 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $25,981 | TotalRevenueColumnAmt |
| Exclusion | $25,981 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Other income | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $8,243 | TotalRevenueColumnAmt |
| Exclusion | $8,243 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $8,243 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $3,459,476 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $1,569,593 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $40,985 | ExclusionAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $338,365 | TotalAmt |
| Program Services | $321,447 | ProgramServicesAmt |
| Management And General | $16,918 | ManagementAndGeneralAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,345,549 | TotalAmt |
| Program Services | $1,130,241 | ProgramServicesAmt |
| Management And General | $90,722 | ManagementAndGeneralAmt |
| Fundraising | $124,586 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $78,216 | TotalAmt |
| Program Services | $60,845 | ProgramServicesAmt |
| Management And General | $8,696 | ManagementAndGeneralAmt |
| Fundraising | $8,675 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $111,543 | TotalAmt |
| Program Services | $89,011 | ProgramServicesAmt |
| Management And General | $11,604 | ManagementAndGeneralAmt |
| Fundraising | $10,928 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $41,997 | TotalAmt |
| Program Services | $13,019 | ProgramServicesAmt |
| Management And General | $10,919 | ManagementAndGeneralAmt |
| Fundraising | $18,059 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $18,362 | TotalAmt |
| Program Services | $5,692 | ProgramServicesAmt |
| Management And General | $4,774 | ManagementAndGeneralAmt |
| Fundraising | $7,896 | FundraisingAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $365,771 | TotalAmt |
| Program Services | $100,438 | ProgramServicesAmt |
| Management And General | $96,599 | ManagementAndGeneralAmt |
| Fundraising | $168,734 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $270,501 | TotalAmt |
| Program Services | $257,632 | ProgramServicesAmt |
| Management And General | $1,266 | ManagementAndGeneralAmt |
| Fundraising | $11,603 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $102,107 | TotalAmt |
| Program Services | $58,211 | ProgramServicesAmt |
| Management And General | $29,323 | ManagementAndGeneralAmt |
| Fundraising | $14,573 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $8,781 | TotalAmt |
| Program Services | $2,722 | ProgramServicesAmt |
| Management And General | $2,283 | ManagementAndGeneralAmt |
| Fundraising | $3,776 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $72,426 | TotalAmt |
| Program Services | $57,168 | ProgramServicesAmt |
| Management And General | $8,871 | ManagementAndGeneralAmt |
| Fundraising | $6,387 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $257,519 | TotalAmt |
| Program Services | $162,259 | ProgramServicesAmt |
| Management And General | $86,997 | ManagementAndGeneralAmt |
| Fundraising | $8,263 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,119 | TotalAmt |
| Program Services | $10,841 | ProgramServicesAmt |
| Management And General | $10,517 | ManagementAndGeneralAmt |
| Fundraising | $761 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,067 | TotalAmt |
| Program Services | $8,301 | ProgramServicesAmt |
| Management And General | $1,106 | ManagementAndGeneralAmt |
| Fundraising | $1,660 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,374 | TotalAmt |
| Program Services | $4,028 | ProgramServicesAmt |
| Management And General | $539 | ManagementAndGeneralAmt |
| Fundraising | $807 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| Data & Research | $1,678,253 | $1,677,443 | $810 | |
| Events | $231,789 | $224,828 | $1,300 | $5,661 |
| Membership/subscription | $47,521 | $45,620 | $1,173 | $728 |
| Miscellaneous | $4,449 | $4,449 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $758 | TotalAmt |
| Program Services | $434 | ProgramServicesAmt |
| Management And General | $324 | ManagementAndGeneralAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,012,467 | TotalAmt |
| Program Services | $4,230,180 | ProgramServicesAmt |
| Management And General | $389,190 | ManagementAndGeneralAmt |
| Fundraising | $393,097 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $387,359 | BOYAmt |
| EOY | $927,955 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,321,018 | BOYAmt |
| EOY | $1,622,629 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,742,500 | BOYAmt |
| EOY | $178,715 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $54,449 | BOYAmt |
| EOY | $0 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,884 | BOYAmt |
| EOY | $27,819 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $57,545 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $30,431 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $19,554 | BOYAmt |
| EOY | $27,114 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $750,313 | BOYAmt |
| EOY | $795,629 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,777 | BOYAmt |
| EOY | $5,777 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,284,854 | BOYAmt |
| EOY | $3,585,638 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $456,413 | BOYAmt |
| EOY | $219,414 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,940 | BOYAmt |
| EOY | $0 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $463,353 | BOYAmt |
| EOY | $219,414 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,920,652 | BOYAmt |
| EOY | $2,412,570 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,900,849 | BOYAmt |
| EOY | $953,654 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,821,501 | BOYAmt |
| EOY | $3,366,224 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,284,854 | BOYAmt |
| EOY | $3,585,638 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$1,552,991 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $97,183 | NetUnrlzdGainsLossesInvstAmt |
| Donated Services And Use Fclts | $531 | DonatedServicesAndUseFcltsAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $2,948,133 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,993,797 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,249,484 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,820,693 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,848,898 | CurrentTaxYearAmt |
| Total | $14,861,005 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $2,948,133 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,993,797 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,249,484 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,820,693 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,848,898 | CurrentTaxYearAmt |
| Total | $14,861,005 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $11,656,570 | SubstantialContributorsTotAmt |
| Public Support Total170 | $3,204,435 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,439 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $2,796 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,464 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $9,206 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $6,761 | CurrentTaxYearAmt |
| Total | $23,666 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus2 Years | $6,675 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $149 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $8,243 | CurrentTaxYearAmt |
| Total | $15,067 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $14,899,738 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $7,801,578 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.21510 | PublicSupportCY170Pct |
| Public Support PY170 | 0.18260 | PublicSupportPY170Pct |
| Ten Pct Facts Crcmstncs Test CY | Yes (X) | TenPctFactsCrcmstncsTestCYInd |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp (4 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| 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, 85% 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 formed in late 2011 and incorporated in April 2012. 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 nine 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. In fact, we believe our work helped reduce the number of people who have undiagnosed FH from 90% to 85%. Part of this effort was assisted by the Foundation advocating for and achieving a separate IDC-10 code specific for clinicians to identify FH. (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 25 peer-reviewed articles in scientific journals since 2014, including four in 2019. 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 2019 FH Global Summit brought together 287 world-renowned experts in FH, cardiology, public health, advocacy, as well as families living with FH to accelerate best practices for FH care. During the 2019 Summit, Dr. Muin Khoury, founding director of the Office of Genomics and Precision Public Health at the Centers for Disease Control and Prevention, discussed how familial hypercholesterolemia (FH) sets the stage for precision public health for other inherited conditions and the progress we have made identifying and treating individuals with FH. Khoury underscored the importance of data for more precisely developing and delivering public health programs to sub-populations: "Families live across states and healthcare systems. We can't do this without precision." . - 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, | 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 December 2019 over 6,000 individuals have been entered in the Registry at 40 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 2019, 197,000 individuals had been diagnosed using the FH diagnosis code (E78.01). - The FH Foundation created the FH Specialists Network identifying over 540 healthcare providers across 35 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. - In addition to a number of community volunteers, one hundred and fifteen 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 accomplish its 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, 2019, reached an audience of 25 million people through social media around the world. - With its FH advocates, it has succeeded in getting governors in Kansas, Oregon, Colorado, New Hampshire, Louisiana, South Dakota, Florida, Indiana, Arkansas and Wisconsin to have FH Awareness Day in their states. - 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 7.300 people following it on Twitter Over 2,2000 people in an online Facebook discussion group from 54 countries around the globe Over 12,500 Likes" on Facebook and 6,600 follow it on Twitter Over 540 FH specialists featured in its Global Specialist Network Over 280 people attending the FH Global Summit each year Over 115 volunteer FH Advocates for Awareness Over 6,200 enrolled in CASCADE FH Registry Clinical Sites Over 500 enrolled in CASCADE FH Registry Patient Portal Over 7,000 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. -Our percentage of public support continues to increase. In 2017, we calculated our public support at 15.33%, in 2018, we calculated our public support at 18.26%, and now in 2019, we calculate our public support at 21.51%. - 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 policymakers. 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. - With our deep connections to the research community, with strong partnerships and collaborations with an academic research facility and another with a community-based research health system, we successfully secured sub-award agreements on two federal research grants that have diversified our funding streams. We are fulfilling our mission by participating in important research to improve the diagnosis rates of those with FH, their care and outcomes. - In 2019, the Foundation had several fundraising successes that included: Corporate Advisory Council - $150,000 FH Global Summit - requested sponsorships from 27 prospects, raised $505,534 FH Community in Action - $370,550 The Foundation received $1,527,884 in corporate support. The Foundation requested support from 10 companies on the Corporate Advisory Council. The Foundation solicited 27 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 $151,136 from individual giving donors (peer to peer fundraising, direct mail appeals, 4 email appeals, Giving Tuesday, 2 End of Year appeals, memorial and tribute gifts, etc.) The Foundation engaged a family member of someone where the parent and children have either FH or HoFH. This family member created a fundraising event around his 40th birthday and raised more than $50,000. He will do another event in 2020 and hopes to raise at least this same. 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 2020. (7) The Foundation's governing body represents the broad interests of the public, rather than the personal or private interests of 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. Five 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 Chair emeritus 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 Vice Chair & 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 2019 board members is below. 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 R. 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. Mary P. McGowan, MD Secretary Treasurer Mary McGowan received her medical degree from the University of Massachusetts. She remained at the University of Massachusetts Medical Center for both intern- ship and residency. She completed her fellowship at Johns Hopkins Hospital. Dr. McGowan is the Co-Director of the Lipid Clinic at Dartmouth Hitchcock Heart and Vascular Center. She is the author of numerous articles and five books. She has been the principal investigator on over 30 national and international clinical trials and has lectured widely in the United States, Canada, Europe and Asia on cholesterol metabolism. Dr. McGowan serves on the alumni board at the University of Massachusetts Medical Center and the National Lipid Association Foundation Board. She has previously served on the National Lipid Association Board of Di- rectors, the NH Affiliate of the American Heart Association Board and was the first Chief Medical Officer of the Familial Hypercholesterolemia Foundation. Dr. McGowan lives in Bedford, NH with her husband. They have three children. 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 the Vice Chair and a board member of the Tennis Foundation Of Connecticut, which has sponsored the annual Connecticut Open tennis tournament since 1989 and sponsors multiple programs to promote women's causes and local youth access to tennis and other sports programs. 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 Member Allison 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 W. Knowles, MD, PhD Chief Research 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 our ability to diagnose and treat patients at risk of heart disease. Dr. Knowles 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 be usually be treated quite effectively. Josh and his wife Juliet live in Palo Alto with their daughter. 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 D. Shapiro, DO Board Member Dr. Shapiro is currently an Associate Professor of Medicine and Radiology at Oregon Health & Science University where he is on faculty in the Knight Cardiovascular Institute. After completing a cardiology fellowship, Michael spent two additional years in a clinical and research fellowship focused on advanced cardiovascular imaging at Massachusetts General Hospital. At OHSU, he's been able to combine his interests in atherosclerosis imaging and prevention of cardiovascular disease. He is Director of the Cardiac MR CT Program, Director of Atherosclerosis imaging, and Associate Director of the Center for Preventive Cardiology. His clinical practice is dedicated to the evaluation and management of patients with or at risk for atherosclerotic cardiovascular disease, with a specific focus on Familial Hypercholesterolemia. Michael has published extensively in the areas of atherosclerosis imaging, lipid disorders, and preventive cardiology. Additionally, he is engaged in clinical trials testing novel lipid modulating therapeutics. His current investigative research focuses on PCSK9 physiology and its impact on lipoprotein metabolism and he directs a large registry and biorepository at the OHSU's Center for Preventive Cardiology. He has enjoyed working with the FH Foundation since its inception and is deeply committed to its mission. Michael and his wife, Grace, live in Portland, OR with their two children. Maria E. Sophocles, MD Board Member Maria Sophocles is a board-certified ob/gyn in practice since 1995. She is currently the Medical Director of Women's Healthcare of Princeton, a progressive practice she founded in 2007. She is a Sexual Medicine specialist who pioneered the use of Co2 laser for vaginal and vulvar applications. She has introduced the technology on five continents and advocates for women's health issues through teaching and lecturing lay public and clinicians nationally and internationally. As an Ob/Gyn and one of 15 members of her family with FH, she hopes to see FH diagnosed more in adult and adolescent women. She believes there is an as yet untapped opportunity to increase awareness and diagnosis of FH through Ob/Gyns since 25% of women use an Ob/Gyn as their sole clinical provider, and women are the primary gatherers for clinical information in the family unit. Katherine A. Wilemon Founder, CEO Katherine's own journey to receive an accurate diagnosis and appropriate care for Familial Hypercholesterolemia (FH) urged her to devote her life to this cause. After being turned away from the ER several times and having a heart attack at 38, Katherine set out to raise awareness of FH and save lives. Katherine has spoken to thousands of people across the US and Europe in her effort to bring FH into focus, both for the public and the medical community. In the U.S. alone there are more than 1.3 million people affected by FH, yet 90% of them are undiagnosed. With the formation of The FH Foundation in 2011, Katherine's goals are to reverse the shocking statistics and empower people with FH to have longer, healthier lives. |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
| Field | Value | IRS element (for citing) |
|---|---|---|
| Volunteers | Yes (1) | VolunteersInd |
| Paid Staff Or Management | Yes (1) | PaidStaffOrManagementInd |
| Media Advertisements | 0 | MediaAdvertisementsInd |
| Mailings Members | 0 | MailingsMembersInd |
| Publications Or Broadcast | 0 | PublicationsOrBroadcastInd |
| Grants Other Organizations | 0 | GrantsOtherOrganizationsInd |
| Direct Contact Legislators | Yes (1) | DirectContactLegislatorsInd |
| Direct Contact Legislators | $132,556 | DirectContactLegislatorsAmt |
| Rallies Demonstrations | 0 | RalliesDemonstrationsInd |
| Other Activities | 0 | OtherActivitiesInd |
| Total Lobbying Expenditures | $132,556 | TotalLobbyingExpendituresAmt |
| Not Described Section501c3 | 0 | NotDescribedSection501c3Ind |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part II-B, Line 1: | FormAndLineReferenceDesc |
| Explanation | The 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 staff members set up Congressional visits with Members or their staff for the Advocates and FH 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 staff members followed up by email with the Members throughout the FY20 appropriations process. The lobbying resulted in CDC being appropriated $100,000 for the first time to specifically address familial hypercholesterolemia. In addition, familial hypercholesterolemia was included as an eligible research topic in the DoD Peer Reviewed Medical Research Program. | ExplanationTxt |
Schedule D IRS990ScheduleD
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $12,496 | OtherCostOrOtherBasisAmt |
| Depreciation | $10,234 | DepreciationAmt |
| Book Value | $2,262 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $45,049 | OtherCostOrOtherBasisAmt |
| Depreciation | $20,197 | DepreciationAmt |
| Book Value | $24,852 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $27,114 | TotalBookValueLandBuildingsAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $3,557,190 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $97,183 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $531 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $97,714 | RevenueNotReportedAmt |
| Revenue Subtotal | $3,459,476 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $3,459,476 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $5,012,467 | TotExpnsEtcAuditedFinclStmtAmt |
| Expenses Not Reported | $0 | ExpensesNotReportedAmt |
| Expenses Subtotal | $5,012,467 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $5,012,467 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part X, Line 2: | FormAndLineReferenceDesc |
| Explanation | The 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | Yes (1) | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (4 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Katherine Wilemon | ||||||||||||||
| CEO/Board Member | $265,529 | $0 | $62,500 | $0 | $0 | $0 | $0 | $0 | $10,336 | $0 | $338,365 | $0 | $0 | $0 |
| A Sheldon | ||||||||||||||
| VP of Marketing | $161,136 | $0 | $7,600 | $0 | $0 | $0 | $0 | $0 | $7,373 | $0 | $176,109 | $0 | $0 | $0 |
| Catherine Ahmed | ||||||||||||||
| VP of Policy | $149,478 | $0 | $7,000 | $0 | $0 | $0 | $0 | $0 | $0 | $0 | $156,478 | $0 | $0 | $0 |
| S Gidding MD | ||||||||||||||
| CMedO (Term end Dec.) | $113,716 | $0 | $30,000 | $0 | $0 | $0 | $0 | $0 | $9,698 | $0 | $153,414 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part I, Line 4a | FormAndLineReferenceDesc |
| Explanation | S. Gidding, MD received severance payment of $30,000 during the reporting period. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (5 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part I, line 1, Description of Organization MIssion: | advocacy, and education of familial hypercholesterolemia (FH). Our mission is to raise awareness of FH in order to increase 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. The FH Foundation is the result of the team effort of patients and healthcare practitioners who have joined their knowledge and passion for helping others in changing the status quo for FH. We are honored to have key FH opinion leaders, both from the U.S. and international arena, sharing their expertise and research insight with The FH Foundation. Our success is rooted in collaboration, innovation, and commitment. With the help of a dedicated group of physicians and nurse practitioners, professional organizations, governmental representatives, and volunteers, The FH Foundation takes pride in its forward-thinking and versatile approach to making a real change in the world of FH. Programs and Initiatives are: CASCADE FH Registry FIND FH FH Global Summit FH Awareness Day FH Patient Speakers Bureau Grand Rounds & Family Forum HoFH Community |
| Form 990, Part VI, Section B, line 11b | The Form 990 is e-mailed to each member and reviewed via electronic media prior to filing. |
| Form 990, Part VI, Section B, line 12c | Conflicts 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 15a | The 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 19 | All documents are available to the public upon request. |
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