MYOTONIC DYSTROPHY FOUNDATION: Form 990, tax year 2018

View the entire original 990 at ProPublica ↗

Organization
MYOTONIC DYSTROPHY FOUNDATION (EIN 20-5014628)
Tax period
2018-01-01 to 2018-12-31
Filed
2019-09-20
IRS object ID
201902639349300140
Schema version
2018v3.1
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

FieldValueIRS element (for citing)
Return2019-09-20T12:49:48-07:00ReturnTs
Tax Period End2018-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN262363334PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1PROPP CHRISTENSEN CANIGLIA LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line19261 Sierra College BoulevardAddressLine1Txt
CityRosevilleCityNm
State AbbreviationCAStateAbbreviationCd
ZIP956615919ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2018-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN205014628EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1MYOTONIC DYSTROPHY FOUNDATION INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlMYOTBusinessNameControlTxt
Phone4158007745PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11004A OREILLY AVENUEAddressLine1Txt
CitySAN FRANCISCOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP94129ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonMOLLY WHITEPersonNm
Person TitleCEOPersonTitleTxt
Signature2019-09-20SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonK JEFFREY DE LYSER CPAPreparerPersonNm
PTINP00022269PTIN
Phone9167512900PhoneNum
FieldValueIRS element (for citing)
Tax2018TaxYr
Build TS2019-02-21 02:37:17ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerMOLLY WHITEPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11004A OREILLY AVENUEAddressLine1Txt
CitySAN FRANCISCOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP94129ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$2,307,597GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
All Affiliates IncludedfalseAllAffiliatesIncludedInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.MYOTONIC.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2006FormationYr
Legal Domicile StateCALegalDomicileStateCd
Activity Or MissionTo lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.ActivityOrMissionDesc
Voting Members Governing Body10VotingMembersGoverningBodyCnt
Voting Members Independent10VotingMembersIndependentCnt
Total Employee11TotalEmployeeCnt
Total Volunteers15TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$3,016,393PYContributionsGrantsAmt
CY Contributions Grants$2,080,997CYContributionsGrantsAmt
PY Program Service Revenue$205,789PYProgramServiceRevenueAmt
CY Program Service Revenue$68,225CYProgramServiceRevenueAmt
PY Investment Income$3,092PYInvestmentIncomeAmt
CY Investment Income$8,449CYInvestmentIncomeAmt
PY Other Revenue$12,582PYOtherRevenueAmt
CY Other Revenue$25,957CYOtherRevenueAmt
PY Total Revenue$3,237,856PYTotalRevenueAmt
CY Total Revenue$2,183,628CYTotalRevenueAmt
PY Grants And Similar Paid$72,185PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$386,847CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$793,161PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$741,161CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$267,666CYTotalFundraisingExpenseAmt
PY Other Expenses$1,133,611PYOtherExpensesAmt
CY Other Expenses$893,668CYOtherExpensesAmt
PY Total Expenses$1,998,957PYTotalExpensesAmt
CY Total Expenses$2,021,676CYTotalExpensesAmt
PY Revenues Less Expenses$1,238,899PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$161,952CYRevenuesLessExpensesAmt
Total Assets BOY$3,288,895TotalAssetsBOYAmt
Total Assets EOY$3,794,207TotalAssetsEOYAmt
Total Liabilities BOY$129,242TotalLiabilitiesBOYAmt
Total Liabilities EOY$471,821TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$3,159,653NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$3,322,386NetAssetsOrFundBalancesEOYAmt
MissionTo lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.MissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$729,658ExpenseAmt
Grant$386,847GrantAmt
DescResearch - We raise additional funds in the private sector in order to accelerate further understanding of the disease through research. MDF supports both clinical and scientific research with a goal of finding a treatment and eventually a cure for this chronic, degenerative disease.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$525,135ExpenseAmt
Revenue$68,225RevenueAmt
DescEducation - We strive not only to help affected individuals, their families and medical professionals understand this disorder, but also to raise awareness about the disease in the general population. MDF supports and helps organize conferences for affected families and medical professionals.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$321,728ExpenseAmt
DescAdvocacy - In collaboration with other organizations, we are establishing and perpetuating local and regional support groups to offer emotional support and help to educate families about this disease. In addition to providing information about available services, we advocate for increased funding for myotonic dystrophy research and patient support.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$1,576,521TotalProgramServiceExpensesAmt
Described In Section501c3Yes (true)DescribedInSection501c3Ind
Schedule B RequiredYes (true)ScheduleBRequiredInd
Political Campaign ActyfalsePoliticalCampaignActyInd
Lobbying ActivitiesfalseLobbyingActivitiesInd
Subject To Proxy TaxfalseSubjectToProxyTaxInd
Donor Advised FundfalseDonorAdvisedFundInd
Conservation EasementsfalseConservationEasementsInd
Collections Of ArtfalseCollectionsOfArtInd
Credit CounselingfalseCreditCounselingInd
Temp Or Permanent EndowmentsfalseTempOrPermanentEndowmentsInd
Report Land Building EquipmentfalseReportLandBuildingEquipmentInd
Report Investments Other SecfalseReportInvestmentsOtherSecInd
Report Program Related InvstfalseReportProgramRelatedInvstInd
Report Other AssetsfalseReportOtherAssetsInd
Report Other LiabilitiesfalseReportOtherLiabilitiesInd
Include FIN48 FootnotefalseIncludeFIN48FootnoteInd
Independent Audit Fincl StmtfalseIndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtYes (true)ConsolidatedAuditFinclStmtInd
School OperatingfalseSchoolOperatingInd
Foreign OfficefalseForeignOfficeInd
Foreign ActivitiesfalseForeignActivitiesInd
More Than5000 K To OrgYes (true)MoreThan5000KToOrgInd
More Than5000 K To IndividualsfalseMoreThan5000KToIndividualsInd
Professional FundraisingfalseProfessionalFundraisingInd
Fundraising ActivitiesYes (true)FundraisingActivitiesInd
Gaming ActivitiesfalseGamingActivitiesInd
Operate HospitalfalseOperateHospitalInd
Grants To OrganizationsYes (true)GrantsToOrganizationsInd
Grants To IndividualsfalseGrantsToIndividualsInd
Schedule J RequiredYes (true)ScheduleJRequiredInd
Tax Exempt BondsfalseTaxExemptBondsInd
Invest Tax Exempt BondsfalseInvestTaxExemptBondsInd
Escrow AccountfalseEscrowAccountInd
On Behalf Of IssuerfalseOnBehalfOfIssuerInd
Engaged In Excess Benefit TransfalseEngagedInExcessBenefitTransInd
PY Excess Benefit TransfalsePYExcessBenefitTransInd
Loan OutstandingfalseLoanOutstandingInd
Grant To Related PersonfalseGrantToRelatedPersonInd
Business Rln With Org MemfalseBusinessRlnWithOrgMemInd
Business Rln With Fam MemfalseBusinessRlnWithFamMemInd
Business Rln With Officer EntfalseBusinessRlnWithOfficerEntInd
Deductible Non Cash ContrifalseDeductibleNonCashContriInd
Deductible Art ContributionfalseDeductibleArtContributionInd
Terminate OperationsfalseTerminateOperationsInd
Partial LiquidationfalsePartialLiquidationInd
Disregarded EntityfalseDisregardedEntityInd
Related EntityYes (true)RelatedEntityInd
Related Organization Ctrl EntYes (true)RelatedOrganizationCtrlEntInd
Transaction With Control EntYes (true)TransactionWithControlEntInd
Trnsfr Exmpt Non Chrtbl Rltd OrgfalseTrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted PrtshpfalseActivitiesConductedPrtshpInd
Schedule O RequiredYes (true)ScheduleORequiredInd
IRP Document19IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld CompliancefalseBackupWthldComplianceInd
Employee11EmployeeCnt
Employment Tax Returns FiledYes (true)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over LimitfalseUnrelatedBusIncmOverLimitInd
Form990 T FiledfalseForm990TFiledInd
Foreign Financial AccountYes (true)ForeignFinancialAccountInd
Foreign CountryOCForeignCountryCd
Prohibited Tax Shelter TransfalseProhibitedTaxShelterTransInd
Taxable Party NotificationfalseTaxablePartyNotificationInd
Nondeductible ContributionsfalseNondeductibleContributionsInd
Quid Pro Quo ContributionsfalseQuidProQuoContributionsInd
Form8282 Property Disposed OffalseForm8282PropertyDisposedOfInd
Form8282 Filed0Form8282FiledCnt
Rcv Fnds To Pay Prsnl Bnft CntrctfalseRcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft CntrctfalsePayPremiumsPrsnlBnftCntrctInd
Form8899 FiledindfalseForm8899Filedind
Form1098 C FiledfalseForm1098CFiledInd
DAF Excess Business HoldingsfalseDAFExcessBusinessHoldingsInd
Taxable DistributionsfalseTaxableDistributionsInd
Distribution To DonorfalseDistributionToDonorInd
Org Filed In Lieu Of Form1041falseOrgFiledInLieuOfForm1041Ind
Licensed More Than One StatefalseLicensedMoreThanOneStateInd
Indoor Tanning ServicesfalseIndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht PymtfalseSubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst IncfalseSubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members10GoverningBodyVotingMembersCnt
Independent Voting Member10IndependentVotingMemberCnt
Family Or Business RlnfalseFamilyOrBusinessRlnInd
Delegation Of Mgmt DutiesfalseDelegationOfMgmtDutiesInd
Change To Org DocumentsfalseChangeToOrgDocumentsInd
Material Diversion Or MisusefalseMaterialDiversionOrMisuseInd
Members Or StockholdersfalseMembersOrStockholdersInd
Election Of Board MembersfalseElectionOfBoardMembersInd
Decisions Subject To ApprovafalseDecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (true)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (true)MinutesOfCommitteesInd
Officer Mailing AddressfalseOfficerMailingAddressInd
Local ChaptersfalseLocalChaptersInd
Form990 Provided To Gvrn BodyYes (true)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (true)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (true)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (true)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (true)WhistleblowerPolicyInd
Document Retention PolicyYes (true)DocumentRetentionPolicyInd
Compensation Process CEOYes (true)CompensationProcessCEOInd
Compensation Process OtherYes (true)CompensationProcessOtherInd
Investment In Joint VenturefalseInvestmentInJointVentureInd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

FieldValueIRS element (for citing)
PersonMOLLY WHITEPersonNm
Phone4158007745PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11004A OREILLY AVENUEAddressLine1Txt
CitySAN FRANCISCOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP94129ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (11 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtAverage Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
WOODY KESSEL
Chairman5.000.00Yes (X)Yes (X)$0$0$0
MARSHA DUGAN
VICE-CHAIRMAN5.000.00Yes (X)Yes (X)$0$0$0
ELIZABETH FLORENCE
Secretary5.000.00Yes (X)Yes (X)$0$0$0
DAVID HERBERT
Treasurer5.000.00Yes (X)Yes (X)$0$0$0
DAVID BERMAN
Director1.000.00Yes (X)$0$0$0
JOHN BREKKA
Director1.000.00Yes (X)$0$0$0
MARTHA MONTAG BROWN
Director1.000.00Yes (X)$0$0$0
JOHN FITZPATRICK
Director1.000.00Yes (X)$0$0$0
JOEL REVILL
Director1.000.00Yes (X)$0$0$0
TODD STONE
Director1.000.00Yes (X)$0$0$0
MOLLY WHITE
CEO60.000.00Yes (X)$201,660$0$4,160
FieldValueIRS element (for citing)
Total Reportable Comp From Org$201,660TotalReportableCompFromOrgAmt
Total Other Compensation$4,160TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (true)TotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$390,612FundraisingAmt
All Other Contributions$1,690,385AllOtherContributionsAmt
Total Contributions$2,080,997TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescConference RevenueDesc
Business624100BusinessCd
Total Revenue Column$68,225TotalRevenueColumnAmt
Related Or Exempt Func Income$68,225RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$68,225TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$8,449TotalRevenueColumnAmt
Exclusion$8,449ExclusionAmt

Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Royalties Revenue RoyaltiesRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Net Rental Income Or Loss NetRentalIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$149,926FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$390,612ContriRptFundraisingEventAmt
Fundraising Direct Expenses$123,969FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$25,957TotalRevenueColumnAmt
Exclusion$25,957ExclusionAmt

Net Income From Gaming NetIncomeFromGamingGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Net Income Or Loss NetIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt
FieldValueIRS element (for citing)
Other Revenue Total$0OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,183,628TotalRevenueColumnAmt
Related Or Exempt Func Income$68,225RelatedOrExemptFuncIncomeAmt
Exclusion$34,406ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$356,847TotalAmt
Program Services$356,847ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$30,000TotalAmt
Program Services$30,000ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$205,820TotalAmt
Program Services$164,647ProgramServicesAmt
Management And General$12,349ManagementAndGeneralAmt
Fundraising$28,824FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$447,736TotalAmt
Program Services$358,171ProgramServicesAmt
Management And General$26,864ManagementAndGeneralAmt
Fundraising$62,701FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$35,547TotalAmt
Program Services$28,436ProgramServicesAmt
Management And General$2,133ManagementAndGeneralAmt
Fundraising$4,978FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$52,058TotalAmt
Program Services$41,644ProgramServicesAmt
Management And General$3,124ManagementAndGeneralAmt
Fundraising$7,290FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$6,362TotalAmt
Program Services$4,881ProgramServicesAmt
Management And General$1,000ManagementAndGeneralAmt
Fundraising$481FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$25,335TotalAmt
Program Services$19,436ProgramServicesAmt
Management And General$3,984ManagementAndGeneralAmt
Fundraising$1,915FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Prof Fundraising FeesForServicesProfFundraising

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$337,948TotalAmt
Program Services$259,256ProgramServicesAmt
Management And General$53,145ManagementAndGeneralAmt
Fundraising$25,547FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$13,834TotalAmt
Program Services$10,612ProgramServicesAmt
Management And General$2,176ManagementAndGeneralAmt
Fundraising$1,046FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$54,094TotalAmt
Program Services$43,192ProgramServicesAmt
Management And General$3,343ManagementAndGeneralAmt
Fundraising$7,559FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$332,086TotalAmt
Program Services$220,048ProgramServicesAmt
Management And General$16,694ManagementAndGeneralAmt
Fundraising$95,344FundraisingAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Payments To Affiliates PaymentsToAffiliatesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$3,918TotalAmt
Program Services$1,244ProgramServicesAmt
Management And General$1,664ManagementAndGeneralAmt
Fundraising$1,010FundraisingAmt

Other Expenses OtherExpensesGrp (3 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
ADMINISTRATION$88,535$28,093$37,609$22,833
Printing and Publications$22,798$7,235$9,684$5,879
Postage and Shipping$8,758$2,779$3,720$2,259

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$2,021,676TotalAmt
Program Services$1,576,521ProgramServicesAmt
Management And General$177,489ManagementAndGeneralAmt
Fundraising$267,666FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$14,438BOYAmt
EOY$28,229EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$2,174,747BOYAmt
EOY$1,751,342EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$1,079,950BOYAmt
EOY$992,232EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Receivables From Officers Etc ReceivablesFromOfficersEtcGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$19,760BOYAmt
EOY$21,697EOYAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
EOY$1,000,707EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$3,288,895BOYAmt
EOY$3,794,207EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$78,242BOYAmt
EOY$112,551EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$51,000BOYAmt
EOY$359,270EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$129,242BOYAmt
EOY$471,821EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,088,666BOYAmt
EOY$2,353,564EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,070,987BOYAmt
EOY$968,822EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$3,159,653BOYAmt
EOY$3,322,386EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$3,288,895BOYAmt
EOY$3,794,207EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$161,952ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$781NetUnrlzdGainsLossesInvstAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or ReviewfalseAccountantCompileOrReviewInd
FS AuditedYes (true)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Consolidated Basis Fincl StmtYes (X)ConsolidatedBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (true)AuditCommitteeInd
Federal Grant Audit RequiredfalseFederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Publicly Supported Org509a2Yes (X)PubliclySupportedOrg509a2Ind

Gifts Grants Contris Rcvd509 GiftsGrantsContrisRcvd509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$696,805CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,113,561CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,551,282CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,016,393CurrentTaxYearMinus1YearAmt
Current Tax Year$2,080,997CurrentTaxYearAmt
Total$9,459,038TotalAmt

Gross Receipts Admissions GrossReceiptsAdmissionsGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$28,534CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$24,525CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$35,347CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$205,789CurrentTaxYearMinus1YearAmt
Current Tax Year$68,225CurrentTaxYearAmt
Total$362,420TotalAmt

Gross Receipts Non Unrlt Bus GrossReceiptsNonUnrltBusGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Tax Rev Levied Orgnztnl Bnft509 TaxRevLeviedOrgnztnlBnft509Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Govt Furn Srvc Fclts Vl509 GovtFurnSrvcFcltsVl509Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total509 Total509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$725,339CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,138,086CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,586,629CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,222,182CurrentTaxYearMinus1YearAmt
Current Tax Year$2,149,222CurrentTaxYearAmt
Total$9,821,458TotalAmt

Amounts Rcvd Dsqlfy Person AmountsRcvdDsqlfyPersonGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Substantial Contributors Amt SubstantialContributorsAmtGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
FieldValueIRS element (for citing)
Public Support Total509$9,821,458PublicSupportTotal509Amt

Gross Investment Income509 GrossInvestmentIncome509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,186CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,425CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,686CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,092CurrentTaxYearMinus1YearAmt
Current Tax Year$8,449CurrentTaxYearAmt
Total$16,838TotalAmt

Post1975 UBTI Post1975UBTIGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Investment Income And UBTI InvestmentIncomeAndUBTIGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,186CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,425CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,686CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,092CurrentTaxYearMinus1YearAmt
Current Tax Year$8,449CurrentTaxYearAmt
Total$16,838TotalAmt

Net Income From Other UBI NetIncomeFromOtherUBIGrp

FieldValueIRS element (for citing)
Current Tax Year Minus2 Years$46,667CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$12,582CurrentTaxYearMinus1YearAmt
Current Tax Year$58,857CurrentTaxYearAmt
Total$118,106TotalAmt

Other Income509 OtherIncome509Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Support Calendar Year TotalSupportCalendarYearGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$727,525CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,139,511CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,634,982CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,237,856CurrentTaxYearMinus1YearAmt
Current Tax Year$2,216,528CurrentTaxYearAmt
Total$9,956,402TotalAmt
FieldValueIRS element (for citing)
Public Support CY5090.98640PublicSupportCY509Pct
Public Support PY5090.99250PublicSupportPY509Pct
Investment Income CY0.00170InvestmentIncomeCYPct
Investment Income PY0.00110InvestmentIncomePYPct
Thirty Thr Pct Suprt Tests CY509Yes (X)ThirtyThrPctSuprtTestsCY509Ind

Schedule B IRS990ScheduleB

Schedule D IRS990ScheduleD

FieldValueIRS element (for citing)
Total Rev Etc Audited Fincl Stmt$1,950,661TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$781NetUnrealizedGainsInvstAmt
Other Revenue-$324,817OtherRevenueAmt
Revenue Not Reported-$324,036RevenueNotReportedAmt
Revenue Subtotal$2,274,697RevenueSubtotalAmt
Other Revenues Not Included-$91,069OtherRevenuesNotIncludedAmt
Revenue Not Reported Fincl Stmt-$91,069RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$2,183,628TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$2,116,526TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$94,850OtherExpensesIncludedAmt
Expenses Not Reported$94,850ExpensesNotReportedAmt
Expenses Subtotal$2,021,676ExpensesSubtotalAmt
Total Expenses Per Form990$2,021,676TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart XII, Line 2d: Other expenses and losses per audited F/SFormAndLineReferenceDesc
ExplanationAFFILIATE'S EXPENSES ON CONSOLIDATED F/S $511881 INTERCOMPANY ELIMINATIONS $-508100 SPECIAL EVENTS EXPENSES $91069ExplanationTxt

Schedule F IRS990ScheduleF

Grants To Org Outside US GrantsToOrgOutsideUSGrp

FieldValueIRS element (for citing)
RegionSWEDENRegionTxt
Purpose Of GrantRESEARCH CONFERENCEPurposeOfGrantTxt
Cash Grant$30,000CashGrantAmt
Manner Of Cash DisbursementWIRE TRANSFEMannerOfCashDisbursementTxt
FieldValueIRS element (for citing)
Total501c3 Org1Total501c3OrgCnt
Transfer To Foreign CorpfalseTransferToForeignCorpInd
Interest In Foreign TrustfalseInterestInForeignTrustInd
Foreign Corp OwnershipfalseForeignCorpOwnershipInd
Passive Foreign Investmest CofalsePassiveForeignInvestmestCoInd
Foreign PartnershipfalseForeignPartnershipInd
Boycott CountriesfalseBoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart II, Line 1 - Method of AccountingFormAndLineReferenceDesc
ExplanationACCRUALExplanationTxt

Schedule G IRS990ScheduleG

FieldValueIRS element (for citing)
Agrmt Prof Fundraising ActyfalseAgrmtProfFundraisingActyInd

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1GALA AND RALLYEvent1Nm
Gross Receipts Event1$540,538GrossReceiptsEvent1Amt
Charitable Contri Event1$390,612CharitableContriEvent1Amt
Gross Revenue Event1$149,926GrossRevenueEvent1Amt
Other Direct Expenses Event1$123,969OtherDirectExpensesEvent1Amt
Gross Receipts Total$540,538GrossReceiptsTotalAmt
Charitable Contributions Tot$390,612CharitableContributionsTotAmt
Gross Revenue Total Events$149,926GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$123,969OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$123,969DirectExpenseSummaryEventsAmt
Net Income Summary$25,957NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (3 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
SCRIPPS RESEARCH INSTITUTE
10550 N TORREY PINES RDLA JOLLACA92037330435954$105,000$0RESEARCH GRANT
THE JACKSON LABORATORY
600 MAIN STREETBAR HARBORME04609010211513$199,270$0RESEARCH GRANT
UNIVERSITY OF FLORIDA
207 GRINTER HALL PO BOX 11550GAINESVILLEFL32611596002052$65,000$0RESEARCH/ MEDICAL EDUCATION
FieldValueIRS element (for citing)
Total501c3 Org0Total501c3OrgCnt
Total Other Org3TotalOtherOrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceGrantmaker's Description of How Grants are UsedFormAndLineReferenceDesc
ExplanationWHEN A GRANT IS AWARDED THERE ARE SUBSTANTIAL AND REGULAR INTERACTIONS BETWEEN GRANTEES AND THE MDF APPOINTED PROJECT ADVISORY COMMITTEE. THE ADVISORY COMMITTEE PROVIDES OVERSIGHT AND GUIDANCE OF FUNDED PROJECTS.WHEN A FELLOWSHIP IS AWARDED EACH RECIPIENT MUST SUBMIT TWO PROGRESS REPORTS DURING THE COURSE OF THE TWO-YEAR FELLOWSHIP. EACH RECIPIENT MUST ALSO SUBMIT EXPENSE REPORTS DURING THE COURSE OF THE TWO-YEAR FELLOWSHIP.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Severance PaymentfalseSeverancePaymentInd
Supplemental Nonqual Rtr PlanfalseSupplementalNonqualRtrPlanInd
Equity Based Comp ArrngmfalseEquityBasedCompArrngmInd
Comp Based On Revenue Of Flng OrgfalseCompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related OrgsfalseCompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng OrgfalseCompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd OrgsfalseCompBsdNetEarnsRltdOrgsInd
Any Non Fixed PaymentsfalseAnyNonFixedPaymentsInd
Initial Contract ExceptionfalseInitialContractExceptionInd
Rebuttable Presumption ProcfalseRebuttablePresumptionProcInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp

FieldValueIRS element (for citing)
PersonMOLLY WHITEPersonNm
TitleCEOTitleTxt
Base Compensation Filing Org$195,000BaseCompensationFilingOrgAmt
Bonus Filing Organization$6,660BonusFilingOrganizationAmount
Nontaxable Benefits Filing Org$4,160NontaxableBenefitsFilingOrgAmt
Total Compensation Filing Org$205,820TotalCompensationFilingOrgAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Line 11b: Form 990 Review ProcessTHE BOARD IS PROVIDED A COPY OF THE TAX RETURN FOR REVIEW PRIOR TO BEING FINALIZED.
Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of ConflictsTHE EXECUTIVE COMMITTEE MONITORS AND ENFORCES COMPLIANCE WITH THE POLICY. THE EXECUTIVE COMMITTEE HAS A FORUM TO RAISE AND ADDRESS ANY POTENTIAL CONFLICTS OF INTEREST AND/OR ANSWER ANY QUESTIONS. MDF MAKES SURE ALL DECISIONS/ACTIONS ARE CLEAR OF CONFLICTS DURING THE WEEKLY CALLS.
Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top ManagementAN INDEPENDENT EMPLOYMENT SEARCH FIRM IS USED ON A CONSULTING BASIS TO PERFORM A MARKET ANALYSIS OF SALARIES AND OTHER COMPENSATION.FOLLOWING THAT ANALYSIS, THE CEO SALARY IS REVIEWED AND APPROVED BY BOTH THE EXECUTIVE COMMITTEE AND THE FULL BOARD.
Form 990, Part VI, Line 19: Other Organization Documents Publicly AvailableAVAILABLE UPON REQUEST.

Schedule R IRS990ScheduleR

Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp

Disregarded Entity Name DisregardedEntityName

FieldValueIRS element (for citing)
Business Name Line1WYCK FOUNDATIONBusinessNameLine1Txt

Foreign Address ForeignAddress

FieldValueIRS element (for citing)
Address Line110 QUEEN STREET PLACEAddressLine1Txt
CityLONDONCityNm
Province Or StateECRProvinceOrStateNm
CountryUKCountryCd
Foreign Postal1BEForeignPostalCd
FieldValueIRS element (for citing)
Primary ActivitiesQUALITY OF LIFE OF PEOPLE WITH MDPrimaryActivitiesTxt
Legal Domicile Foreign CountryUKLegalDomicileForeignCountryCd

Direct Controlling Entity Name DirectControllingEntityName

FieldValueIRS element (for citing)
Business Name Line1MYOTONIC DYSTROPHY FOUNDATION INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Controlled OrganizationYes (true)ControlledOrganizationInd
FieldValueIRS element (for citing)
Receipt Of Int Annts Rnts RyltsfalseReceiptOfIntAnntsRntsRyltsInd
Gift Grnt Or Cap Contri To Oth OrgfalseGiftGrntOrCapContriToOthOrgInd
Gift Grnt Cap Contri From Oth OrgYes (true)GiftGrntCapContriFromOthOrgInd
Loans Or Guarantees To Other OrgfalseLoansOrGuaranteesToOtherOrgInd
Loans Or Guarantees From Oth OrgfalseLoansOrGuaranteesFromOthOrgInd
Div Related OrganizationfalseDivRelatedOrganizationInd
Asset Sale To Other OrgfalseAssetSaleToOtherOrgInd
Asset Purchase From Other OrgfalseAssetPurchaseFromOtherOrgInd
Asset ExchangefalseAssetExchangeInd
Rental Of Facilities To Oth OrgfalseRentalOfFacilitiesToOthOrgInd
Rental Of Fclts From Oth OrgfalseRentalOfFcltsFromOthOrgInd
Perform Of Services For Oth OrgfalsePerformOfServicesForOthOrgInd
Perform Of Services By Other OrgfalsePerformOfServicesByOtherOrgInd
Sharing Of FacilitiesfalseSharingOfFacilitiesInd
Paid Employees SharingfalsePaidEmployeesSharingInd
Reimbursement Paid To Other OrgfalseReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other OrgfalseReimbursementPaidByOtherOrgInd
Transfer To Other OrgfalseTransferToOtherOrgInd
Transfer From Other OrgfalseTransferFromOtherOrgInd

Transactions Related Org TransactionsRelatedOrgGrp

Other Organization Name OtherOrganizationName

FieldValueIRS element (for citing)
Business Name Line1WYCK FOUNDATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Transaction TypecTransactionTypeTxt
Involved$508,100InvolvedAmt
Method Of Amount DeterminationCASHMethodOfAmountDeterminationTxt

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