MYOTONIC DYSTROPHY FOUNDATION: Form 990, tax year 2023

View the entire original 990 at ProPublica ↗

Organization
MYOTONIC DYSTROPHY FOUNDATION (EIN 20-5014628)
Tax period
2023-01-01 to 2023-12-31
Filed
2024-11-14
IRS object ID
202403199349315440
Schema version
2023v5.1
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)
Return2024-11-14T14:35:04-08:00ReturnTs
Tax Period End2023-12-31TaxPeriodEndDt

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 Begin2023-01-01TaxPeriodBeginDt

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
Signature2024-11-14SignatureDt
Discuss With Paid PreparerYes (true)DiscussWithPaidPreparerInd
FieldValueIRS element (for citing)
IRS Responsible Prty Info CurrYes (true)IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonK JEFFREY DE LYSER CPAPreparerPersonNm
PTINP00022269PTIN
Phone9167512900PhoneNum
FieldValueIRS element (for citing)
Tax2023TaxYr
Build TS2024-10-15 13:58:12ZBuildTS

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$2,737,884GrossReceiptsAmt
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 Body12VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee10TotalEmployeeCnt
Total Volunteers90TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$2,774,635PYContributionsGrantsAmt
CY Contributions Grants$2,324,783CYContributionsGrantsAmt
PY Program Service Revenue$66,768PYProgramServiceRevenueAmt
CY Program Service Revenue$82,999CYProgramServiceRevenueAmt
PY Investment Income$4,672PYInvestmentIncomeAmt
CY Investment Income$183,627CYInvestmentIncomeAmt
PY Other Revenue-$72,040PYOtherRevenueAmt
CY Other Revenue-$142,929CYOtherRevenueAmt
PY Total Revenue$2,774,035PYTotalRevenueAmt
CY Total Revenue$2,448,480CYTotalRevenueAmt
PY Grants And Similar Paid$1,048,270PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$701,687CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$646,166PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$979,808CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$210,240CYTotalFundraisingExpenseAmt
PY Other Expenses$811,709PYOtherExpensesAmt
CY Other Expenses$2,109,633CYOtherExpensesAmt
PY Total Expenses$2,506,145PYTotalExpensesAmt
CY Total Expenses$3,791,128CYTotalExpensesAmt
PY Revenues Less Expenses$267,890PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$1,342,648CYRevenuesLessExpensesAmt
Total Assets BOY$6,830,491TotalAssetsBOYAmt
Total Assets EOY$5,467,413TotalAssetsEOYAmt
Total Liabilities BOY$1,488,211TotalLiabilitiesBOYAmt
Total Liabilities EOY$1,465,481TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$5,342,280NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$4,001,932NetAssetsOrFundBalancesEOYAmt
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$1,205,823ExpenseAmt
Grant$701,687GrantAmt
Revenue$82,999RevenueAmt
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 Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,138,608ExpenseAmt
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 Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$382,109ExpenseAmt
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$2,726,540TotalProgramServiceExpensesAmt
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 LiabilitiesYes (true)ReportOtherLiabilitiesInd
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 EntfalseTransactionWithControlEntInd
Trnsfr Exmpt Non Chrtbl Rltd OrgfalseTrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted PrtshpfalseActivitiesConductedPrtshpInd
Schedule O RequiredYes (true)ScheduleORequiredInd
IRP Document21IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld CompliancefalseBackupWthldComplianceInd
Employee10EmployeeCnt
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 Members12GoverningBodyVotingMembersCnt
Independent Voting Member12IndependentVotingMemberCnt
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 (16 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)$240,871$0$23,477
KLEED CUMMING
COMM/TECH MANAGER40.000.00$131,861$0$942
CATHERINE BECK
PROJECTS MANAGER40.000.00$126,798$0$2,397
MINDY BUCHANAN
DIR. OF PROGRAMS40.000.00$108,620$0$2,301
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)
BELEN ESPARIS
Director2.000.00$0$0$0Yes (X)
HALEY MARTINELLI
Director1.000.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$608,150TotalReportableCompFromOrgAmt
Total Other Compensation$29,117TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K4IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (true)TotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Fundraising$1,411,186FundraisingAmt
All Other Contributions$913,597AllOtherContributionsAmt
Noncash Contributions$325NoncashContributionsAmt
Total Contributions$2,324,783TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescConference RegistrationDesc
Business624100BusinessCd
Total Revenue Column$82,999TotalRevenueColumnAmt
Related Or Exempt Func Income$82,999RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$82,999TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$119,090TotalRevenueColumnAmt
Exclusion$119,090ExclusionAmt

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

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$211,012SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$146,475SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$64,537SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$64,537TotalRevenueColumnAmt
Exclusion$64,537ExclusionAmt
FieldValueIRS element (for citing)
Contri Rpt Fundraising Event$1,411,186ContriRptFundraisingEventAmt
Fundraising Direct Expenses$142,929FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$142,929TotalRevenueColumnAmt
Exclusion-$142,929ExclusionAmt

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$2,448,480TotalRevenueColumnAmt
Related Or Exempt Func Income$82,999RelatedOrExemptFuncIncomeAmt
Exclusion$40,698ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$701,687TotalAmt
Program Services$701,687ProgramServicesAmt

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$264,348TotalAmt
Program Services$222,105ProgramServicesAmt
Management And General$18,452ManagementAndGeneralAmt
Fundraising$23,791FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$590,992TotalAmt
Program Services$496,551ProgramServicesAmt
Management And General$41,251ManagementAndGeneralAmt
Fundraising$53,190FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$61,399TotalAmt
Program Services$51,587ProgramServicesAmt
Management And General$4,286ManagementAndGeneralAmt
Fundraising$5,526FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$63,069TotalAmt
Program Services$52,991ProgramServicesAmt
Management And General$4,402ManagementAndGeneralAmt
Fundraising$5,676FundraisingAmt

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$19,995TotalAmt
Program Services$14,853ProgramServicesAmt
Management And General$2,189ManagementAndGeneralAmt
Fundraising$2,953FundraisingAmt

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$517,285TotalAmt
Program Services$384,254ProgramServicesAmt
Management And General$56,638ManagementAndGeneralAmt
Fundraising$76,393FundraisingAmt

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$40,512TotalAmt
Program Services$30,093ProgramServicesAmt
Management And General$4,436ManagementAndGeneralAmt
Fundraising$5,983FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$28,805TotalAmt
Program Services$23,409ProgramServicesAmt
Management And General$2,887ManagementAndGeneralAmt
Fundraising$2,509FundraisingAmt

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$745,148TotalAmt
Program Services$690,513ProgramServicesAmt
Management And General$49,184ManagementAndGeneralAmt
Fundraising$5,451FundraisingAmt

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$4,274TotalAmt
Program Services$2,056ProgramServicesAmt
Management And General$1,085ManagementAndGeneralAmt
Fundraising$1,133FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
UNCOLLECTIBLE ACCOUNTS$644,784$10,000$632,731$2,053
ADMINISTRATION$64,461$31,013$16,365$17,083
Postage and Shipping$17,405$8,373$4,419$4,613
Printing and Publications$14,664$7,055$3,723$3,886

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$12,300TotalAmt
Management And General$12,300ManagementAndGeneralAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$3,791,128TotalAmt
Program Services$2,726,540ProgramServicesAmt
Management And General$854,348ManagementAndGeneralAmt
Fundraising$210,240FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$370,582BOYAmt
EOY$391,111EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$2,606,142BOYAmt
EOY$4,755,236EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$794,128BOYAmt
EOY$200,990EOYAmt

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$14,073BOYAmt
EOY$14,073EOYAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
EOY$0EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$3,012,396BOYAmt
EOY$46,548EOYAmt

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)
BOY$33,170BOYAmt
EOY$59,455EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$6,830,491BOYAmt
EOY$5,467,413EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$65,774BOYAmt
EOY$104,573EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$1,388,750BOYAmt
EOY$1,300,000EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$33,687BOYAmt
EOY$60,908EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,488,211BOYAmt
EOY$1,465,481EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$4,630,121BOYAmt
EOY$3,939,773EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$712,159BOYAmt
EOY$62,159EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$5,342,280BOYAmt
EOY$4,001,932EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$6,830,491BOYAmt
EOY$5,467,413EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$1,342,648ReconcilationRevenueExpnssAmt
Donated Services And Use Fclts$2,300DonatedServicesAndUseFcltsAmt
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$1,671,220CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,987,042CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,409,559CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,774,635CurrentTaxYearMinus1YearAmt
Current Tax Year$232,483CurrentTaxYearAmt
Total$9,074,939TotalAmt

Gross Receipts Admissions GrossReceiptsAdmissionsGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$75,663CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$26,106CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$23,300CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$66,768CurrentTaxYearMinus1YearAmt
Current Tax Year$82,999CurrentTaxYearAmt
Total$274,836TotalAmt

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$1,746,883CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,013,148CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,432,859CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,841,403CurrentTaxYearMinus1YearAmt
Current Tax Year$315,482CurrentTaxYearAmt
Total$9,349,775TotalAmt

Amounts Rcvd Dsqlfy Person AmountsRcvdDsqlfyPersonGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$150,957CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$142,138CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$295,682CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$270,809CurrentTaxYearMinus1YearAmt
Current Tax Year$143,459CurrentTaxYearAmt
Total$1,003,045TotalAmt

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$150,957CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$142,138CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$295,682CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$270,809CurrentTaxYearMinus1YearAmt
Current Tax Year$143,459CurrentTaxYearAmt
Total$1,003,045TotalAmt
FieldValueIRS element (for citing)
Public Support Total509$8,346,730PublicSupportTotal509Amt

Gross Investment Income509 GrossInvestmentIncome509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$16,560CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$6,329CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$269CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,672CurrentTaxYearMinus1YearAmt
Current Tax Year$119,090CurrentTaxYearAmt
Total$146,920TotalAmt

Post1975 UBTI Post1975UBTIGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Investment Income And UBTI InvestmentIncomeAndUBTIGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$16,560CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$6,329CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$269CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,672CurrentTaxYearMinus1YearAmt
Current Tax Year$119,090CurrentTaxYearAmt
Total$146,920TotalAmt

Net Income From Other UBI NetIncomeFromOtherUBIGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$507,010CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years-$71,671CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years-$49,510CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year-$98,290CurrentTaxYearMinus1YearAmt
Current Tax Year-$145,229CurrentTaxYearAmt
Total$142,310TotalAmt

Other Income509 OtherIncome509Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Support Calendar Year TotalSupportCalendarYearGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,270,453CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,947,806CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,383,618CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,747,785CurrentTaxYearMinus1YearAmt
Current Tax Year$289,343CurrentTaxYearAmt
Total$9,639,005TotalAmt
FieldValueIRS element (for citing)
Public Support CY5090.86590PublicSupportCY509Pct
Public Support PY5090.88550PublicSupportPY509Pct
Investment Income CY0.01520InvestmentIncomeCYPct
Investment Income PY0.00310InvestmentIncomePYPct
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

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescOPERATING LEASE LIABILITYDesc
Amt$60,908Amt
FieldValueIRS element (for citing)
Total Liability$60,908TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt$2,648,540TotalRevEtcAuditedFinclStmtAmt
Donated Services And Use Fclts$2,300DonatedServicesAndUseFcltsAmt
Other Revenue$197,760OtherRevenueAmt
Revenue Not Reported$200,060RevenueNotReportedAmt
Revenue Subtotal$2,448,480RevenueSubtotalAmt
Total Revenue Per Form990$2,448,480TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$3,953,764TotExpnsEtcAuditedFinclStmtAmt
Other Expenses Included$162,636OtherExpensesIncludedAmt
Expenses Not Reported$162,636ExpensesNotReportedAmt
Expenses Subtotal$3,791,128ExpensesSubtotalAmt
Total Expenses Per Form990$3,791,128TotalExpensesPerForm990Amt

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 $52531 SPECIAL EVENTS EXPENSES $145229
Part XII, Line 2d: Other expenses and losses per audited F/SAFFILIATE'S EXPENSES ON CONSOLIDATED F/S $17407 SPECIAL EVENTS EXPENSES $145229

Schedule G IRS990ScheduleG

FieldValueIRS element (for citing)
Agrmt Prof Fundraising ActyfalseAgrmtProfFundraisingActyInd

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1GALAEvent1Nm
Gross Receipts Event1$1,411,186GrossReceiptsEvent1Amt
Charitable Contri Event1$1,411,186CharitableContriEvent1Amt
Other Direct Expenses Event1$142,929OtherDirectExpensesEvent1Amt
Gross Receipts Total$1,411,186GrossReceiptsTotalAmt
Charitable Contributions Tot$1,411,186CharitableContributionsTotAmt
Oth Direct Expnss Total Events$142,929OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$142,929DirectExpenseSummaryEventsAmt
Net Income Summary-$142,929NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (7 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
EMORY UNIVERSITY
1599 CLIFTON ROAD NEATLANTAGA30322580566256501(C)(3)$55,000$0RESEARCH
STANFORD SCHOOL OF MEDICINE
269 CAMPUS DRIVE WESTSTANFORDCA94305941156365501(C)(3)$190,000$0RESEARCH
UNIVERISTY OF ROCHESTER
601 ELMWOOD AVENUEROCHESTERNY14642160743209501(C)(3)$245,000$0RESEARCH
UNIVERSITY OF FLORIDA
2033 MOWRY ROADGAINESVILLEFL32610590974739501(C)(3)$55,000$0RESEARCH
UNIVERSITY OF MISSOURI
601 TURNER AVENUECOLUMBIAMO65211436003859501(C)(3)$50,000$0RESEARCH
UNIVERSITY OF NEVADA
4505 MARYLAND PARKWAYLAS VEGASNV89154886000024501(C)(3)$50,000$0RESEARCH
VIRGINIA COMMONWEALTH UNIVERS
921 W FRANKLIN STREETRICHMONDVA23284546001758501(C)(3)$55,000$0RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org7Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt

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$240,871BaseCompensationFilingOrgAmt
Deferred Compensation Flng Org$22,500DeferredCompensationFlngOrgAmt
Nontaxable Benefits Filing Org$977NontaxableBenefitsFilingOrgAmt
Total Compensation Filing Org$264,348TotalCompensationFilingOrgAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Section B, Line 11bTHE BOARD IS PROVIDED A COPY OF THE TAX RETURN FOR REVIEW PRIOR TO BEING FINALIZED.
Form 990, Part VI, Section B, Line 12cTHE 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, Section B, Line 15aAN 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, Section C, Line 19AVAILABLE 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 SharingfalsePaidEmployeesSharingInd
Reimbursement Paid To Other OrgfalseReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other OrgfalseReimbursementPaidByOtherOrgInd
Transfer To Other OrgfalseTransferToOtherOrgInd
Transfer From Other OrgfalseTransferFromOtherOrgInd

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