CHARCOT-MARIE-TOOTH ASSOCIATION: Form 990, tax year 2016

View the entire original 990 at ProPublica ↗

Organization
CHARCOT-MARIE-TOOTH ASSOCIATION (EIN 22-2480896)
Tax period
2016-01-01 to 2016-12-31
Filed
2017-07-19
IRS object ID
201732009349300513
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)
Return2017-07-19T10:51:24-05:00ReturnTs
Tax Period End2016-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN363858249PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1Stern Cassello & Associates LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line11 N LaSalle St Suite 1620AddressLine1Txt
CityChicagoCityNm
State AbbreviationILStateAbbreviationCd
ZIP60602ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2016-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN222480896EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1Charcot-Marie-Tooth AssociationBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlCHARBusinessNameControlTxt
Phone6104999264PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO Box 105AddressLine1Txt
CityGlenoldenCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19036ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonKimberly MageePersonNm
Person TitleDirector of FinancePersonTitleTxt
Phone8006062682PhoneNum
Signature2017-07-13SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJames R SternPreparerPersonNm
PTINP00831572PTIN
Phone3122639100PhoneNum
Preparation2017-07-13PreparationDt
Self EmployedYes (X)SelfEmployedInd

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address12.237.121.146IPv4AddressTxt
FieldValueIRS element (for citing)
IP2017-07-13IPDt
IP Tm13:01:09IPTm
IP TimezoneCDIPTimezoneCd
Federal Original Submission Id3611302017171033ae09FederalOriginalSubmissionId
Federal Original Submission Id2017-06-20FederalOriginalSubmissionIdDt
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id6C9B1A35775087DBDB8A6D25ECA509C7F6C27838AtSubmissionCreationDeviceId
At Submission Filing Device Id3DBBE3AB308D8E4EFED7A5E05CDCB98F3D99DE58AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2016TaxYr
Build TS2021-01-29 14:40:06ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Amended ReturnYes (X)AmendedReturnInd
Principal OfficerAmy GrayPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO Box 105AddressLine1Txt
CityGlenoldenCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19036ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$3,410,875GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website Addresswww.cmtausa.orgWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1983FormationYr
Legal Domicile StatePALegalDomicileStateCd
Activity Or MissionTo support the development of new drugs to treat Charcot-Marie-Tooth disease(CMT), to improve the quality of life for people with CMT and, ultimately, to find a cure.ActivityOrMissionDesc
Voting Members Governing Body14VotingMembersGoverningBodyCnt
Voting Members Independent14VotingMembersIndependentCnt
Total Employee8TotalEmployeeCnt
Total Volunteers0TotalVolunteersCnt
Total Gross UBI$695TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$2,297,705PYContributionsGrantsAmt
CY Contributions Grants$1,642,776CYContributionsGrantsAmt
PY Program Service Revenue$618,370PYProgramServiceRevenueAmt
CY Program Service Revenue$783,564CYProgramServiceRevenueAmt
PY Investment Income$1,191PYInvestmentIncomeAmt
CY Investment Income$695CYInvestmentIncomeAmt
PY Other Revenue$734,828PYOtherRevenueAmt
CY Other Revenue$749,994CYOtherRevenueAmt
PY Total Revenue$3,652,094PYTotalRevenueAmt
CY Total Revenue$3,177,029CYTotalRevenueAmt
PY Grants And Similar Paid$1,879,117PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,392,292CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$965,751PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$900,907CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$319,238CYTotalFundraisingExpenseAmt
PY Other Expenses$1,194,770PYOtherExpensesAmt
CY Other Expenses$1,114,998CYOtherExpensesAmt
PY Total Expenses$4,039,638PYTotalExpensesAmt
CY Total Expenses$3,408,197CYTotalExpensesAmt
PY Revenues Less Expenses-$387,544PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$231,168CYRevenuesLessExpensesAmt
Total Assets BOY$1,546,625TotalAssetsBOYAmt
Total Assets EOY$1,191,444TotalAssetsEOYAmt
Total Liabilities BOY$516,455TotalLiabilitiesBOYAmt
Total Liabilities EOY$392,442TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$1,030,170NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$799,002NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTo support the development of new drugs to treat Charcot-Marie-Tooth disease(CMT), to improve the quality of life for people with CMT and, ultimately, to find a cure.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$1,724,733ExpenseAmt
Grant$1,392,292GrantAmt
DescThe organization awards research fellowships and grants for research on Charcot-Marie-Tooth Disease. It also hosts bi-annual meetings of all researchers receiving its funding to promote knowledge exchange and synergy, as well as meetings and consortiums of others working in this field. It uses the services of a medical research consultant to oversee the selection of the recipients of the research funding and to write the grants and contracts with these researchers. (See Part VII, Section B).Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$118,413ExpenseAmt
DescThe organization publishes a bi-monthly newsletter and other educational publications and maintains a website for patients, their families, and medical practitioners to assist in understanding and treating Charcot-Marie-Tooth Disease.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$180,656ExpenseAmt
Revenue$783,564RevenueAmt
DescThe organization organizes and conducts support groups, conferences and educational webinars for patients, their families, and medical practitioners, to share knowledge and promote awareness of CMT Disease.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$823,900ExpenseAmt
DescAllocated Program Services Expenses such as Salaries, Benefits, Occupancy Expenses, and Management Services.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$823,900TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$2,847,702TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Temp Or Permanent Endowments0TempOrPermanentEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With Officer Ent0BusinessRlnWithOfficerEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document19IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee8EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Indoor Tanning Services0IndoorTanningServicesInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members14GoverningBodyVotingMembersCnt
Independent Voting Member14IndependentVotingMemberCnt
Family Or Business RlnYes (1)FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org DocumentsYes (1)ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process Other0CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

FieldValueIRS element (for citing)
PersonKimberly MageePersonNm
Phone6104999264PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1P O Box 105AddressLine1Txt
CityGlenoldenCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19036ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (16 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
Herbert Beron
Secretary0.00Yes (X)Yes (X)$0$0$0
Stephen D Blevit
Director0.00Yes (X)$0$0$0
Gilles Bouchard
Chairman0.00Yes (X)Yes (X)$0$0$0
Laura Fava
Director0.00Yes (X)$0$0$0
Gary J Gasper
Treasurer0.00Yes (X)Yes (X)$0$0$0
Alan Korowitz
Director0.00Yes (X)$0$0$0
Steven O'Donnell
Director0.00Yes (X)$0$0$0
Chris Ouellette
Director0.00Yes (X)$0$0$0
Phyllis Sanders
Director0.00Yes (X)$0$0$0
Dr Steven Scherer
Director0.00Yes (X)$0$0$0
Dr Michael Shy
Director0.00Yes (X)$0$0$0
Dr John Svaren
Director0.00Yes (X)$0$0$0
Dr Peter I Warfield
Director0.00Yes (X)$0$0$0
Dr Lawrence Wrabitz
Director0.00Yes (X)$0$0$0
Patrick Livney
CEO40.00Yes (X)$325,000$0$0
Kimberly J Magee
Director of Finance40.00Yes (X)$82,500$0$0
FieldValueIRS element (for citing)
Total Reportable Comp From Org$407,500TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$0TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp

Contractor Name ContractorName

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1HumanFirst Therapeutics LLCBusinessNameLine1Txt

Contractor Address ContractorAddress

US Address USAddress

FieldValueIRS element (for citing)
Address Line19600 Dewitt Drive Suite 1AddressLine1Txt
CitySilver SpringCityNm
State AbbreviationMDStateAbbreviationCd
ZIP20910ZIPCd
FieldValueIRS element (for citing)
ServicesMedical Research ConsultantServicesDesc
Compensation$224,965CompensationAmt
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K1CntrctRcvdGreaterThan100KCnt
Membership Dues$78,003MembershipDuesAmt
All Other Contributions$1,564,773AllOtherContributionsAmt
Total Contributions$1,642,776TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescSupport Group RevenueDesc
Business624100BusinessCd
Total Revenue Column$783,564TotalRevenueColumnAmt
Related Or Exempt Func Income$783,564RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$783,564TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$695TotalRevenueColumnAmt
Unrelated Business Revenue$695UnrelatedBusinessRevenueAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$983,840FundraisingGrossIncomeAmt
Fundraising Direct Expenses$233,846FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$749,994TotalRevenueColumnAmt
Exclusion$749,994ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$3,177,029TotalRevenueColumnAmt
Related Or Exempt Func Income$783,564RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$695UnrelatedBusinessRevenueAmt
Exclusion$749,994ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,392,292TotalAmt
Program Services$1,392,292ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$538,425TotalAmt
Program Services$405,938ProgramServicesAmt
Management And General$26,337ManagementAndGeneralAmt
Fundraising$106,150FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$316,177TotalAmt
Program Services$231,561ProgramServicesAmt
Fundraising$84,616FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$46,305TotalAmt
Program Services$40,551ProgramServicesAmt
Management And General$1,356ManagementAndGeneralAmt
Fundraising$4,398FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$98,967TotalAmt
Program Services$51,585ProgramServicesAmt
Fundraising$47,382FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$660TotalAmt
Fundraising$660FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$223,262TotalAmt
Program Services$28,992ProgramServicesAmt
Management And General$194,270ManagementAndGeneralAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$7,436TotalAmt
Management And General$7,436ManagementAndGeneralAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$11,858TotalAmt
Management And General$11,858ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp

FieldValueIRS element (for citing)
DescDirect Program ExpensesDesc
Total$772,815TotalAmt
Program Services$696,783ProgramServicesAmt
Fundraising$76,032FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$3,408,197TotalAmt
Program Services$2,847,702ProgramServicesAmt
Management And General$241,257ManagementAndGeneralAmt
Fundraising$319,238FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,365,878BOYAmt
EOY$1,002,637EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$142,000BOYAmt
EOY$160,544EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$7,415BOYAmt
EOY$8,789EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$45,718LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$26,244LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$31,332BOYAmt
EOY$19,474EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$1,546,625BOYAmt
EOY$1,191,444EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$152,567BOYAmt
EOY$28,554EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$363,888BOYAmt
EOY$363,888EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$516,455BOYAmt
EOY$392,442EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$112,103BOYAmt
EOY-$47,139EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$918,067BOYAmt
EOY$846,141EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,030,170BOYAmt
EOY$799,002EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,546,625BOYAmt
EOY$1,191,444EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$231,168ReconcilationRevenueExpnssAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

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$896,651CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,114,359CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,361,672CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$2,297,705CurrentTaxYearMinus1YearAmt
Current Tax Year$1,642,776CurrentTaxYearAmt
Total$8,313,163TotalAmt

Gross Receipts Admissions GrossReceiptsAdmissionsGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$911,366CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$958,215CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$944,580CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,628,420CurrentTaxYearMinus1YearAmt
Current Tax Year$1,767,404CurrentTaxYearAmt
Total$6,209,985TotalAmt

Total509 Total509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,808,017CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,072,574CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$3,306,252CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,926,125CurrentTaxYearMinus1YearAmt
Current Tax Year$3,410,180CurrentTaxYearAmt
Total$14,523,148TotalAmt

Amounts Rcvd Dsqlfy Person AmountsRcvdDsqlfyPersonGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Substantial Contributors Amt SubstantialContributorsAmtGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Subst And Dsqlfy Prsns Tot SubstAndDsqlfyPrsnsTotGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
FieldValueIRS element (for citing)
Public Support Total509$14,523,148PublicSupportTotal509Amt

Gross Investment Income509 GrossInvestmentIncome509Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,778CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,165CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,615CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,191CurrentTaxYearMinus1YearAmt
Current Tax Year$695CurrentTaxYearAmt
Total$8,444TotalAmt

Investment Income And UBTI InvestmentIncomeAndUBTIGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,778CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,165CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$2,615CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,191CurrentTaxYearMinus1YearAmt
Current Tax Year$695CurrentTaxYearAmt
Total$8,444TotalAmt

Total Support Calendar Year TotalSupportCalendarYearGrp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,809,795CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,074,739CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$3,308,867CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,927,316CurrentTaxYearMinus1YearAmt
Current Tax Year$3,410,875CurrentTaxYearAmt
Total$14,531,592TotalAmt
FieldValueIRS element (for citing)
Public Support CY5090.99940PublicSupportCY509Pct
Public Support PY5090.99930PublicSupportPY509Pct
Investment Income CY0.00060InvestmentIncomeCYPct
Investment Income PY0.00070InvestmentIncomePYPct
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 C IRS990ScheduleC

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$31,725FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$31,725FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$2,847,702FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$2,879,427FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$293,971FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$73,493FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$232,000CurrentYearMinus3Amt
Current Year Minus2$269,312CurrentYearMinus2Amt
Current Year Minus1$314,955CurrentYearMinus1Amt
Current Year$293,971CurrentYearAmt
Total$1,110,238TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$1,665,357LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$18,475CurrentYearMinus3Amt
Current Year Minus2$26,250CurrentYearMinus2Amt
Current Year Minus1$30,300CurrentYearMinus1Amt
Current Year$31,725CurrentYearAmt
Total$106,750TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$58,000CurrentYearMinus3Amt
Current Year Minus2$67,328CurrentYearMinus2Amt
Current Year Minus1$78,739CurrentYearMinus1Amt
Current Year$73,493CurrentYearAmt
Total$277,560TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$416,340GrassrootsCeilingAmt

Schedule D IRS990ScheduleD

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$45,718OtherCostOrOtherBasisAmt
Depreciation$26,244DepreciationAmt
Book Value$19,474BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$19,474TotalBookValueLandBuildingsAmt
Total Rev Etc Audited Fincl Stmt$3,177,029TotalRevEtcAuditedFinclStmtAmt
Revenue Not Reported$0RevenueNotReportedAmt
Revenue Subtotal$3,177,029RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$3,177,029TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$3,408,197TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$3,408,197ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$3,408,197TotalExpensesPerForm990Amt

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continutation Total Office0ContinutationTotalOfficeCnt
Continutation Total Employee0ContinutationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$0SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$0TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtValuation Method UsedValuationMethodUsedDesc
EuropeHigh Dosage Oprozomib studies in CMTA1A rats.$13,015Wire TransferCash Value
EuropeGene therapy approach to treat CMT4C neuropathy.$27,751Wire TransferCash Value
FieldValueIRS element (for citing)
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart I, Line 2:FormAndLineReferenceDesc
ExplanationThe Association requires, by contract, periodic progress reports on the funded research. The contract also includes a full Research Plan with Budget and Deliverables.ExplanationTxt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1CMTA Golf OutingEvent1Nm
Gross Receipts Event1$399,074GrossReceiptsEvent1Amt
Gross Revenue Event1$399,074GrossRevenueEvent1Amt
Other Direct Expenses Event1$136,303OtherDirectExpensesEvent1Amt
Event2CMTA NY EventEvent2Nm
Gross Receipts Event2$254,021GrossReceiptsEvent2Amt
Gross Revenue Event2$254,021GrossRevenueEvent2Amt
Other Direct Expenses Event2$46,559OtherDirectExpensesEvent2Amt
Other Events Total6OtherEventsTotalCnt
Gross Receipts Other Events$330,745GrossReceiptsOtherEventsAmt
Gross Revenue Other Events$330,745GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$50,983OthDirectExpnssOtherEventsAmt
Gross Receipts Total$983,840GrossReceiptsTotalAmt
Gross Revenue Total Events$983,840GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$233,845OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$233,845DirectExpenseSummaryEventsAmt
Net Income Summary$749,995NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (8 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
Johns Hopkins University
12529 Collections Center DriveChicagoIL60693520595110$60,113To characterize and validate approaches that lead to efficient differentiation of Schwann cells from human induced pluirpotent stem cells.
National Center for Advancing Translational Science
31 Center Drive Bldg 31 Room 3B11BethsedaMD20892$90,000Assay Development of High Throughput Screen for CMTA Therapeutics
UB Foundation Services Inc
PO Box 900BuffaloNY14226160865182$111,430Validation of Primary CMT1A Drug Screening Hits in Myelinating Co-Cultures.Creation of a Mouse Model of CMT1B-T124M.
University of Iowa-Carver College of Medicine
200 Hawkins Drive 2007 RCPIowa CityIA52242426004813$150,080To generate XBP-1 SW6 Schwann cells and maintian the CMT database.
University of Miami
PO Box 405803AtlantaGA30384590624458$20,000Assay Development for CMT2A.
University of Missouri-Columbia
115 Business Loop 70W Mizzou N RmColumbiaMO65211436003859$35,382Developing a minimally invasive Biomarker for CMT;Neurofilament levels in CMT2E mouse model.501
University of Pennsylvania
PO Box 785541PhiladelpiaPA19178231352685$50,861Development of mouse model for CMT2A
University of Wisconsin Madison
21 N park Street Suite 6401MadisonWI53715396006492$44,335Therapy development for CMT1A.

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePart I, Line 2:FormAndLineReferenceDesc
ExplanationThe Association requires, by contract, periodic progress reports on the funded research. The contract also includes a full Research Plan with Budget and Deliverables.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
First Class Or Charter TravelYes (X)FirstClassOrCharterTravelInd
Written Policy Ref T And E ExpnssYes (1)WrittenPolicyRefTAndEExpnssInd
Substantiation RequiredYes (1)SubstantiationRequiredInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp

FieldValueIRS element (for citing)
PersonPatrick LivneyPersonNm
TitleCEOTitleTxt
Base Compensation Filing Org$325,000BaseCompensationFilingOrgAmt
Compensation Based On Rltd Orgs$0CompensationBasedOnRltdOrgsAmt
Bonus Filing Organization$0BonusFilingOrganizationAmount
Bonus Related Organizations$0BonusRelatedOrganizationsAmt
Other Compensation Filing Org$0OtherCompensationFilingOrgAmt
Other Compensation Rltd Orgs$0OtherCompensationRltdOrgsAmt
Deferred Compensation Flng Org$0DeferredCompensationFlngOrgAmt
Deferred Comp Rltd Orgs$0DeferredCompRltdOrgsAmt
Nontaxable Benefits Filing Org$0NontaxableBenefitsFilingOrgAmt
Nontaxable Benefits Rltd Orgs$0NontaxableBenefitsRltdOrgsAmt
Total Compensation Filing Org$325,000TotalCompensationFilingOrgAmt
Total Compensation Rltd Orgs$0TotalCompensationRltdOrgsAmt
Comp Report Prior990 Filing Org$0CompReportPrior990FilingOrgAmt
Comp Report Prior990 Rltd Orgs$0CompReportPrior990RltdOrgsAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (9 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Section A, line 2Gilles Bouchard (Chairman of the Board) and Chris Ouellette (Member of the Board) are brothers-in-law.
Form 990, Part VI, Section A, line 4The By-Laws were changed to officially incorporate the Conflict of Interest Policy. In addition, four physicians were added to the Board as Voting Members. However, they do not vote on Research spending.
Form 990, Part VI, Section B, line 11bForm 990 will be reviewed by the Board of Directors.
Form 990, Part VI, Section B, line 12cThe organization had a workshop for all Board members on the Conflict of Interest Policy. The physicians on the Board disclose all pertinent research work, and do not vote on research spending.
Form 990, Part VI, Section B, line 15aThe organization's Board of Director's determines CEO's compensation annually, considering whatever factors and information it deems appropriate.
Form 990, Part VI, Section C, line 19Upon request by mail, telephone, and/or email. Audited Financial Statements are avalable on the Organization's website.
Form 990, Part XII, Line 2cThe organization has not changed its selection and oversight process during the tax year.
Form 990, Part XII, Line 2cThe Board of Directors assumes oversight of the independent auditor and the annual audit.
Page One Item B - Amended ReturnThe return is amended to change the name of the Officer signing the tax return and to change Page 6, Part VI, Section A, Item 8b to Yes.

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