MYOTONIC DYSTROPHY FOUNDATION: Form 990, tax year 2016

View the entire original 990 at ProPublica ↗

Organization
MYOTONIC DYSTROPHY FOUNDATION (EIN 20-5014628)
Tax period
2016-01-01 to 2016-12-31
Filed
2017-08-08
IRS object ID
201732209349300643
Schema version
2016v3.0
Source
Download XML · Original 990 at ProPublica

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

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2017-08-08T10:32:06-07:00ReturnTs
Tax Period End2016-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

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 Begin2016-01-01TaxPeriodBeginDt

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
Signature2017-08-08SignatureDt
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)
Tax2016TaxYr
Build TS2021-01-29 14:40:06ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Gross Receipts$1,881,009GrossReceiptsAmt
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 Body9VotingMembersGoverningBodyCnt
Voting Members Independent9VotingMembersIndependentCnt
Total Employee9TotalEmployeeCnt
Total Volunteers40TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$2,113,561PYContributionsGrantsAmt
CY Contributions Grants$1,551,282CYContributionsGrantsAmt
PY Program Service Revenue$24,525PYProgramServiceRevenueAmt
CY Program Service Revenue$206,241CYProgramServiceRevenueAmt
PY Investment Income$1,425PYInvestmentIncomeAmt
CY Investment Income$1,686CYInvestmentIncomeAmt
CY Other Revenue$46,667CYOtherRevenueAmt
PY Total Revenue$2,139,511PYTotalRevenueAmt
CY Total Revenue$1,805,876CYTotalRevenueAmt
PY Grants And Similar Paid$41,977PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$72,637CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$658,168PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$901,265CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$252,134CYTotalFundraisingExpenseAmt
PY Other Expenses$649,980PYOtherExpensesAmt
CY Other Expenses$998,425CYOtherExpensesAmt
PY Total Expenses$1,350,125PYTotalExpensesAmt
CY Total Expenses$1,972,327CYTotalExpensesAmt
PY Revenues Less Expenses$789,386PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$166,451CYRevenuesLessExpensesAmt
Total Assets BOY$2,299,688TotalAssetsBOYAmt
Total Assets EOY$2,063,066TotalAssetsEOYAmt
Total Liabilities BOY$212,483TotalLiabilitiesBOYAmt
Total Liabilities EOY$142,312TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$2,087,205NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$1,920,754NetAssetsOrFundBalancesEOYAmt
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$598,843ExpenseAmt
Grant$72,637GrantAmt
Revenue$170,894RevenueAmt
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$570,739ExpenseAmt
Revenue$35,347RevenueAmt
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$405,801ExpenseAmt
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$1,575,383TotalProgramServiceExpensesAmt
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 OrgfalseMoreThan5000KToOrgInd
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 Document18IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld CompliancefalseBackupWthldComplianceInd
Employee9EmployeeCnt
Employment Tax Returns FiledfalseEmploymentTaxReturnsFiledInd
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
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members9GoverningBodyVotingMembersCnt
Independent Voting Member9IndependentVotingMemberCnt
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 Line11003B OREILLY AVENUEAddressLine1Txt
CitySAN FRANCISCOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP94129ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (10 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtAverage Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
JEREMY KELLY
Chairman5.000.00Yes (X)Yes (X)$0$0$0
WOODIE KESSEL
VICE-CHAIRMAN10.000.00Yes (X)Yes (X)$0$0$0
DAVID HERBERT
Treasurer2.000.00Yes (X)Yes (X)$0$0$0
ELIZABETH FLORENCE
Secretary1.000.00Yes (X)Yes (X)$0$0$0
JOHN BREKKA
BOARD MEMBER0.000.00Yes (X)$0$0$0
JOHN FITZPATRICK
BOARD MEMBER1.000.00Yes (X)$0$0$0
TIM KAINE
BOARD MEMBER1.000.00Yes (X)$0$0$0
MELVIN KOHN
BOARD MEMBER1.000.00Yes (X)$0$0$0
TODD STONE
BOARD MEMBER1.000.00Yes (X)$0$0$0
MOLLY WHITE
CEO60.000.00Yes (X)$201,588$0$2,385
FieldValueIRS element (for citing)
Total Reportable Comp From Org$201,588TotalReportableCompFromOrgAmt
Total Other Compensation$2,385TotalOtherCompensationAmt
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$352,870FundraisingAmt
All Other Contributions$1,198,412AllOtherContributionsAmt
Total Contributions$1,551,282TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
Conference Revenue624100$35,347$35,347
RESEARCH REIMBURSEMENT541700$170,894$170,894
FieldValueIRS element (for citing)
Total Program Service Revenue$206,241TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,686TotalRevenueColumnAmt
Exclusion$1,686ExclusionAmt

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$121,800FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$352,870ContriRptFundraisingEventAmt
Fundraising Direct Expenses$75,133FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$46,667TotalRevenueColumnAmt

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$1,805,876TotalRevenueColumnAmt
Related Or Exempt Func Income$206,241RelatedOrExemptFuncIncomeAmt
Exclusion$1,686ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$72,637TotalAmt
Program Services$72,637ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$203,973TotalAmt
Program Services$167,360ProgramServicesAmt
Management And General$11,137ManagementAndGeneralAmt
Fundraising$25,476FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$638,475TotalAmt
Program Services$523,878ProgramServicesAmt
Management And General$34,880ManagementAndGeneralAmt
Fundraising$79,717FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$58,817TotalAmt
Program Services$48,260ProgramServicesAmt
Management And General$3,213ManagementAndGeneralAmt
Fundraising$7,344FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$297TotalAmt
Management And General$297ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$15,825TotalAmt
Management And General$15,825ManagementAndGeneralAmt

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$452,940TotalAmt
Program Services$386,462ProgramServicesAmt
Management And General$36,550ManagementAndGeneralAmt
Fundraising$29,928FundraisingAmt

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$33,637TotalAmt
Program Services$27,714ProgramServicesAmt
Management And General$3,777ManagementAndGeneralAmt
Fundraising$2,146FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$45,035TotalAmt
Program Services$36,064ProgramServicesAmt
Management And General$2,667ManagementAndGeneralAmt
Fundraising$6,304FundraisingAmt

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$342,583TotalAmt
Program Services$262,629ProgramServicesAmt
Management And General$16,114ManagementAndGeneralAmt
Fundraising$63,840FundraisingAmt

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$4,375TotalAmt
Program Services$2,117ProgramServicesAmt
Management And General$2,258ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (3 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
ADMINISTRATION$72,977$33,782$12,355$26,840
Printing and Publications$24,017$11,307$4,480$8,230
Postage and Shipping$6,739$3,173$1,257$2,309

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,972,327TotalAmt
Program Services$1,575,383ProgramServicesAmt
Management And General$144,810ManagementAndGeneralAmt
Fundraising$252,134FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$56,962BOYAmt
EOY$12,065EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$820,042BOYAmt
EOY$1,660,182EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$961,540BOYAmt
EOY$101,764EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$434,985BOYAmt
EOY$257,257EOYAmt

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$26,159BOYAmt
EOY$31,798EOYAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

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$2,299,688BOYAmt
EOY$2,063,066EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$87,483BOYAmt
EOY$67,312EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$125,000BOYAmt
EOY$75,000EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$212,483BOYAmt
EOY$142,312EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,689,900BOYAmt
EOY$1,690,704EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$397,305BOYAmt
EOY$230,050EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$2,087,205BOYAmt
EOY$1,920,754EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$2,299,688BOYAmt
EOY$2,063,066EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$166,451ReconcilationRevenueExpnssAmt
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$726,874CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,464,729CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$696,805CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,113,561CurrentTaxYearMinus1YearAmt
Current Tax Year$1,551,282CurrentTaxYearAmt
Total$6,553,251TotalAmt

Gross Receipts Admissions GrossReceiptsAdmissionsGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$10,308CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$16,180CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$28,534CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$24,525CurrentTaxYearMinus1YearAmt
Current Tax Year$35,347CurrentTaxYearAmt
Total$114,894TotalAmt

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$737,182CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,480,909CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$725,339CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,138,086CurrentTaxYearMinus1YearAmt
Current Tax Year$1,586,629CurrentTaxYearAmt
Total$6,668,145TotalAmt

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$6,668,145PublicSupportTotal509Amt

Gross Investment Income509 GrossInvestmentIncome509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$319CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,457CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,186CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,425CurrentTaxYearMinus1YearAmt
Current Tax Year$1,686CurrentTaxYearAmt
Total$7,073TotalAmt

Post1975 UBTI Post1975UBTIGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Investment Income And UBTI InvestmentIncomeAndUBTIGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$319CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,457CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,186CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,425CurrentTaxYearMinus1YearAmt
Current Tax Year$1,686CurrentTaxYearAmt
Total$7,073TotalAmt

Net Income From Other UBI NetIncomeFromOtherUBIGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Income509 OtherIncome509Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Support Calendar Year TotalSupportCalendarYearGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$737,501CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,482,366CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$727,525CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,139,511CurrentTaxYearMinus1YearAmt
Current Tax Year$1,588,315CurrentTaxYearAmt
Total$6,675,218TotalAmt
FieldValueIRS element (for citing)
Public Support CY5090.99890PublicSupportCY509Pct
Public Support PY5090.99910PublicSupportPY509Pct
Investment Income CY0.00110InvestmentIncomeCYPct
Investment Income PY0.00090InvestmentIncomePYPct
Thirty Thr Pct Suprt Tests CY509Yes (X)ThirtyThrPctSuprtTestsCY509Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

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

Schedule D IRS990ScheduleD

FieldValueIRS element (for citing)
Total Rev Etc Audited Fincl Stmt$2,467,539TotalRevEtcAuditedFinclStmtAmt
Other Revenue$586,530OtherRevenueAmt
Revenue Not Reported$586,530RevenueNotReportedAmt
Revenue Subtotal$1,881,009RevenueSubtotalAmt
Other Revenues Not Included-$75,133OtherRevenuesNotIncludedAmt
Revenue Not Reported Fincl Stmt-$75,133RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$1,805,876TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$3,842,562TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$1,870,235OtherExpensesIncludedAmt
Expenses Not Reported$1,870,235ExpensesNotReportedAmt
Expenses Subtotal$1,972,327ExpensesSubtotalAmt
Total Expenses Per Form990$1,972,327TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990AFFILIATE'S REVENUE ON CONSOLIDATED F/S $757424 INTERCOMPANY ELIMINATIONS $-170894
Part XII, Line 2d: Other expenses and losses per audited F/SAFFILIATE'S EXPENSES ON CONSOLIDATED F/S $1965996 INTERCOMPANY ELIMINATIONS $-170894 SPECIAL EVENTS EXPENSES $75133

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$474,670GrossReceiptsEvent1Amt
Charitable Contri Event1$352,870CharitableContriEvent1Amt
Gross Revenue Event1$121,800GrossRevenueEvent1Amt
Other Direct Expenses Event1$75,133OtherDirectExpensesEvent1Amt
Gross Receipts Total$474,670GrossReceiptsTotalAmt
Charitable Contributions Tot$352,870CharitableContributionsTotAmt
Gross Revenue Total Events$121,800GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$75,133OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$75,133DirectExpenseSummaryEventsAmt
Net Income Summary$46,667NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (6 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
OHIO STATE UNIVERSITY
281 W LANE AVECOLUMBUSOH43210316025986115$25,000$0CLINICAL RESEARCH
PICNIC HEALTH
2519 MISSION STSAN FRANCISCOCA94110$25,000$0RESEARCH
STANFORD UNIVERSITY
450 SERRA MALLSTANFORDCA94305941156365501(C)(3)$25,000$0CLINICAL RESEARCH
UNIVERSITY OF IOWA
105 JESSUP HALLIOWA CITYIA52242426004813115$8,000$0POST DOCTORAL SUPPORT RESEARCH PROJ
UNIVERSITY OF KANSAS
1450 JAYHAWK BLVDLAWRENCEKS66045481124839501(C)(3)$25,000$0CLINICAL RESEARCH
UNIVERSITY OF UTAH
1471 EAST FEDERAL WAYSALT LAKE CITYUT94102876000525501(C)(3)$6,000$0CLINICAL RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org3Total501c3OrgCnt
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 RECEIVED FUNDS ARE ALLOCATED TO APPROPRIATE REVENUE AND PROGRAM ACCOUNTS WITHIN THE ACCOUNTING SOFTWARE. MDF TRACKS ALL GRANT MONEY AND HOW IT IS SPENT. ANY HIGH LEVEL GRANT REQUIREMENTS ARE DOCUMENTED AND ANY REPORTING REQUIREMENTS ARE FOLLOWED UP ON ACCORDINGLY.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$201,588BaseCompensationFilingOrgAmt
Nontaxable Benefits Filing Org$2,385NontaxableBenefitsFilingOrgAmt
Total Compensation Filing Org$203,973TotalCompensationFilingOrgAmt

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 HUMAN RESOURCE ORGANIZATION IS USED ON A CONSULTING BASIS TO DETERMINE THE APPROPRIATENESS OF SALARIES AND OTHER COMPENSATION.FOLLOWING THAT REVIEW, SALARIES ARE AGAIN 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 OrgfalseGiftGrntCapContriFromOthOrgInd
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 OrgYes (true)ReimbursementPaidByOtherOrgInd
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 TypeqTransactionTypeTxt
Involved$170,894InvolvedAmt
Method Of Amount DeterminationcashMethodOfAmountDeterminationTxt

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