MYOTONIC DYSTROPHY FOUNDATION: Form 990, tax year 2021

View the entire original 990 at ProPublica ↗

Organization
MYOTONIC DYSTROPHY FOUNDATION (EIN 20-5014628)
Tax period
2021-01-01 to 2021-12-31
Filed
2022-09-16
IRS object ID
202202599349300535
Schema version
2021v4.0
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)
Return2022-09-16T12:54:58-07:00ReturnTs
Tax Period End2021-12-31TaxPeriodEndDt

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
ZIP95661ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2021-01-01TaxPeriodBeginDt

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 Line1663 THIRTEENTH STREET SUITE 100AddressLine1Txt
CityOAKLANDCityNm
State AbbreviationCAStateAbbreviationCd
ZIP94612ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonTANYA STEVENSONPersonNm
Person TitleCEOPersonTitleTxt
Signature2022-09-16SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstTANYAPersonFirstNm
Person LastSTEVENSONPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonK JEFFREY DE LYSER CPAPreparerPersonNm
PTINP00022269PTIN
Phone9167512900PhoneNum

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer2TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
Federated Assurance LevelFAL1FederatedAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2021TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerTANYA STEVENSONPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1663 THIRTEENTH STREET SUITE 100AddressLine1Txt
CityOAKLANDCityNm
State AbbreviationCAStateAbbreviationCd
ZIP94612ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$2,433,128GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
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 Employee5TotalEmployeeCnt
Total Volunteers90TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$1,987,042PYContributionsGrantsAmt
CY Contributions Grants$2,409,559CYContributionsGrantsAmt
PY Program Service Revenue$26,106PYProgramServiceRevenueAmt
CY Program Service Revenue$23,300CYProgramServiceRevenueAmt
PY Investment Income$6,329PYInvestmentIncomeAmt
CY Investment Income$269CYInvestmentIncomeAmt
PY Other Revenue-$71,671PYOtherRevenueAmt
CY Other Revenue-$49,510CYOtherRevenueAmt
PY Total Revenue$1,947,806PYTotalRevenueAmt
CY Total Revenue$2,383,618CYTotalRevenueAmt
PY Grants And Similar Paid$117,329PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$553,570CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$573,340PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$605,089CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$58,658CYTotalFundraisingExpenseAmt
PY Other Expenses$434,110PYOtherExpensesAmt
CY Other Expenses$331,866CYOtherExpensesAmt
PY Total Expenses$1,124,779PYTotalExpensesAmt
CY Total Expenses$1,490,525CYTotalExpensesAmt
PY Revenues Less Expenses$823,027PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$893,093CYRevenuesLessExpensesAmt
Total Assets BOY$4,489,179TotalAssetsBOYAmt
Total Assets EOY$5,846,076TotalAssetsEOYAmt
Total Liabilities BOY$322,658TotalLiabilitiesBOYAmt
Total Liabilities EOY$786,638TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$4,166,521NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$5,059,438NetAssetsOrFundBalancesEOYAmt
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$791,279ExpenseAmt
Grant$553,570GrantAmt
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$358,221ExpenseAmt
Revenue$23,300RevenueAmt
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$143,623ExpenseAmt
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$1,293,123TotalProgramServiceExpensesAmt
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
Donor Rstr Or Quasi EndowmentsfalseDonorRstrOrQuasiEndowmentsInd
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
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 With35 Ctrl EntfalseBusinessRlnWith35CtrlEntInd
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 Document12IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld CompliancefalseBackupWthldComplianceInd
Employee5EmployeeCnt
Employment Tax Returns FiledYes (true)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over LimitfalseUnrelatedBusIncmOverLimitInd
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
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)
PersonTANYA STEVENSONPersonNm
Phone4158007745PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1663 THIRTEENTH STREET SUITE 100AddressLine1Txt
CityOAKLANDCityNm
State AbbreviationCAStateAbbreviationCd
ZIP94612ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (11 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtAverage Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
TANYA STEVENSON
CEO60.000.00Yes (X)$216,761$0$20,245
JEREMY KELLY
CHAIR5.000.00Yes (X)$0$0$0Yes (X)
MARTHA MONTAG BROWN
VICE-CHAIR5.000.00Yes (X)$0$0$0Yes (X)
ELIZABETH FLORENCE
Secretary5.000.00Yes (X)$0$0$0Yes (X)
DAVID HERBERT
Treasurer5.000.00Yes (X)$0$0$0Yes (X)
DAVID BERMAN
Director1.000.00$0$0$0Yes (X)
JOHN W DAY
Director1.000.00$0$0$0Yes (X)
CHARLES THORNTON
Director1.000.00$0$0$0Yes (X)
JOHN FITZPATRICK
Director1.000.00$0$0$0Yes (X)
JOEL REVILL
Director1.000.00$0$0$0Yes (X)
TOM McPeek
Director1.000.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$216,761TotalReportableCompFromOrgAmt
Total Other Compensation$20,245TotalOtherCompensationAmt
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$951,839FundraisingAmt
Government Grants$82,700GovernmentGrantsAmt
All Other Contributions$1,375,020AllOtherContributionsAmt
Total Contributions$2,409,559TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescConference RegistrationDesc
Business624100BusinessCd
Total Revenue Column$23,300TotalRevenueColumnAmt
Related Or Exempt Func Income$23,300RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$23,300TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$269TotalRevenueColumnAmt
Exclusion$269ExclusionAmt

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)
Contri Rpt Fundraising Event$951,839ContriRptFundraisingEventAmt
Fundraising Direct Expenses$49,510FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$49,510TotalRevenueColumnAmt
Exclusion-$49,510ExclusionAmt

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$2,383,618TotalRevenueColumnAmt
Related Or Exempt Func Income$23,300RelatedOrExemptFuncIncomeAmt
Exclusion-$49,241ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$553,570TotalAmt
Program Services$553,570ProgramServicesAmt

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$237,006TotalAmt
Program Services$181,225ProgramServicesAmt
Management And General$37,687ManagementAndGeneralAmt
Fundraising$18,094FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$313,624TotalAmt
Program Services$239,811ProgramServicesAmt
Management And General$49,870ManagementAndGeneralAmt
Fundraising$23,943FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$16,898TotalAmt
Program Services$12,921ProgramServicesAmt
Management And General$2,687ManagementAndGeneralAmt
Fundraising$1,290FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$37,561TotalAmt
Program Services$28,720ProgramServicesAmt
Management And General$5,973ManagementAndGeneralAmt
Fundraising$2,868FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$17,475TotalAmt
Program Services$12,973ProgramServicesAmt
Management And General$2,006ManagementAndGeneralAmt
Fundraising$2,496FundraisingAmt

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$190,915TotalAmt
Program Services$161,330ProgramServicesAmt
Management And General$24,937ManagementAndGeneralAmt
Fundraising$4,648FundraisingAmt

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$662TotalAmt
Program Services$491ProgramServicesAmt
Management And General$76ManagementAndGeneralAmt
Fundraising$95FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$24,605TotalAmt
Program Services$21,071ProgramServicesAmt
Management And General$1,587ManagementAndGeneralAmt
Fundraising$1,947FundraisingAmt

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$35,844TotalAmt
Program Services$35,844ProgramServicesAmt

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$7,696TotalAmt
Program Services$4,292ProgramServicesAmt
Management And General$1,323ManagementAndGeneralAmt
Fundraising$2,081FundraisingAmt

Other Expenses OtherExpensesGrp (3 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
ADMINISTRATION$40,702$31,113$9,589
Printing and Publications$9,614$6,629$2,043$942
Postage and Shipping$4,353$3,133$966$254

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,490,525TotalAmt
Program Services$1,293,123ProgramServicesAmt
Management And General$138,744ManagementAndGeneralAmt
Fundraising$58,658FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$321,288BOYAmt
EOY$349,365EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$3,425,079BOYAmt
EOY$4,543,350EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$687,525BOYAmt
EOY$903,607EOYAmt

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$55,287BOYAmt
EOY$49,754EOYAmt

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$4,489,179BOYAmt
EOY$5,846,076EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$38,113BOYAmt
EOY$64,138EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$284,545BOYAmt
EOY$722,500EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$322,658BOYAmt
EOY$786,638EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$3,449,101BOYAmt
EOY$4,347,279EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$717,420BOYAmt
EOY$712,159EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,166,521BOYAmt
EOY$5,059,438EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$4,489,179BOYAmt
EOY$5,846,076EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$893,093ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$176NetUnrlzdGainsLossesInvstAmt
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$3,016,393CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,080,997CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,671,220CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,987,042CurrentTaxYearMinus1YearAmt
Current Tax Year$2,409,559CurrentTaxYearAmt
Total$11,165,211TotalAmt

Gross Receipts Admissions GrossReceiptsAdmissionsGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$205,789CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$68,225CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$75,663CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$26,106CurrentTaxYearMinus1YearAmt
Current Tax Year$23,300CurrentTaxYearAmt
Total$399,083TotalAmt

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$3,222,182CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,149,222CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,746,883CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,013,148CurrentTaxYearMinus1YearAmt
Current Tax Year$2,432,859CurrentTaxYearAmt
Total$11,564,294TotalAmt

Amounts Rcvd Dsqlfy Person AmountsRcvdDsqlfyPersonGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$148,428CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$111,543CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$150,957CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$142,138CurrentTaxYearMinus1YearAmt
Current Tax Year$295,682CurrentTaxYearAmt
Total$848,748TotalAmt

Substantial Contributors Amt SubstantialContributorsAmtGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Subst And Dsqlfy Prsns Tot SubstAndDsqlfyPrsnsTotGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$148,428CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$111,543CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$150,957CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$142,138CurrentTaxYearMinus1YearAmt
Current Tax Year$295,682CurrentTaxYearAmt
Total$848,748TotalAmt
FieldValueIRS element (for citing)
Public Support Total509$10,715,546PublicSupportTotal509Amt

Gross Investment Income509 GrossInvestmentIncome509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,092CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$8,449CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$16,560CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$6,329CurrentTaxYearMinus1YearAmt
Current Tax Year$269CurrentTaxYearAmt
Total$34,699TotalAmt

Post1975 UBTI Post1975UBTIGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Investment Income And UBTI InvestmentIncomeAndUBTIGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,092CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$8,449CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$16,560CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$6,329CurrentTaxYearMinus1YearAmt
Current Tax Year$269CurrentTaxYearAmt
Total$34,699TotalAmt

Net Income From Other UBI NetIncomeFromOtherUBIGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$12,582CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$25,957CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$507,010CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year-$71,671CurrentTaxYearMinus1YearAmt
Current Tax Year-$49,510CurrentTaxYearAmt
Total$424,368TotalAmt

Other Income509 OtherIncome509Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Support Calendar Year TotalSupportCalendarYearGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,237,856CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,183,628CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,270,453CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,947,806CurrentTaxYearMinus1YearAmt
Current Tax Year$2,383,618CurrentTaxYearAmt
Total$12,023,361TotalAmt
FieldValueIRS element (for citing)
Public Support CY5090.89120PublicSupportCY509Pct
Public Support PY5090.90010PublicSupportPY509Pct
Investment Income CY0.00290InvestmentIncomeCYPct
Investment Income PY0.00320InvestmentIncomePYPct
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$2,579,047TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$176NetUnrealizedGainsInvstAmt
Other Revenue$195,605OtherRevenueAmt
Revenue Not Reported$195,429RevenueNotReportedAmt
Revenue Subtotal$2,383,618RevenueSubtotalAmt
Total Revenue Per Form990$2,383,618TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$1,550,270TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$59,745OtherExpensesIncludedAmt
Expenses Not Reported$59,745ExpensesNotReportedAmt
Expenses Subtotal$1,490,525ExpensesSubtotalAmt
Total Expenses Per Form990$1,490,525TotalExpensesPerForm990Amt

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 $146095 SPECIAL EVENTS EXPENSES $49510
Part XII, Line 2d: Other expenses and losses per audited F/SAFFILIATE'S EXPENSES ON CONSOLIDATED F/S $10235 SPECIAL EVENTS EXPENSES $49510

Schedule G IRS990ScheduleG

FieldValueIRS element (for citing)
Agrmt Prof Fundraising ActyfalseAgrmtProfFundraisingActyInd

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1GALAEvent1Nm
Gross Receipts Event1$951,839GrossReceiptsEvent1Amt
Charitable Contri Event1$951,839CharitableContriEvent1Amt
Other Direct Expenses Event1$49,510OtherDirectExpensesEvent1Amt
Gross Receipts Total$951,839GrossReceiptsTotalAmt
Charitable Contributions Tot$951,839CharitableContributionsTotAmt
Oth Direct Expnss Total Events$49,510OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$49,510DirectExpenseSummaryEventsAmt
Net Income Summary-$49,510NetIncomeSummaryAmt

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 GrantPurposeOfGrantTxtAddress Line1ForeignAddress/AddressLine1TxtCityForeignAddress/CityNmCountryForeignAddress/CountryCdForeign PostalForeignAddress/ForeignPostalCd
BAYLOR COLLEGE OF MEDICINE
1 BAYLOR PLAZAHOUSTONTX77030741613878501(C)(3)$105,000$0RESEARCH FELLOWSHIP
MASSACHUSETTS GENERAL HOSP
55 Fruit StreetBostonMA02114041564655501(C)(3)$105,000$0RESEARCH
UNIVERISTY OF ROCHESTER
601 ELMWOOD AVENUEROCHESTERNY14642160743209501(C)(3)$160,000$0RESEARCH
UNIVERSITY OF FLORIDA
89 STADIUM ROADGAINESVILLEFL32611590974739501(C)(3)$83,494$0RESEARCH
UNIVERSITY OF NOTTINGHAM
GB 690 391 225$55,000$0RESEARCHUNIVERSITY PARKNOTTINGHAMUKNG7 2RD
UNVERSITY AT ALBANY
1400 WASHINGTON AVENUEALBANYNY12222161514621501(C)(3)$55,000$0RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org5Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt

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

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp

FieldValueIRS element (for citing)
PersonTANYA STEVENSONPersonNm
TitleCEOTitleTxt
Base Compensation Filing Org$216,761BaseCompensationFilingOrgAmt
Deferred Compensation Flng Org$19,500DeferredCompensationFlngOrgAmt
Nontaxable Benefits Filing Org$745NontaxableBenefitsFilingOrgAmt
Total Compensation Filing Org$237,006TotalCompensationFilingOrgAmt

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 REGULARLY SCHEDULED MEETINGS.
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 Line1MDF UKBusinessNameLine1Txt

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 DMPrimaryActivitiesTxt
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 SharingYes (true)PaidEmployeesSharingInd
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 Line1MDF UKBusinessNameLine1Txt
FieldValueIRS element (for citing)
Transaction TypeoTransactionTypeTxt
Involved$52,246InvolvedAmt
Method Of Amount DeterminationcashMethodOfAmountDeterminationTxt

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