GRACE SCIENCE FOUNDATION: Form 990, tax year 2021
View the entire original 990 at ProPublica ↗
- Organization
- GRACE SCIENCE FOUNDATION (EIN 46-5727883)
- Tax period
- 2021-01-01 to 2021-12-31
- Filed
- 2022-11-15
- IRS object ID
- 202213209349300911
- Schema version
- 2021v4.2
- 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2022-11-15T23:08:10-06:00 | ReturnTs |
| Tax Period End | 2021-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | WITHUMSMITHBROWNPC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 601 CALIFORNIA STREET SUITE 1800 | AddressLine1Txt |
| City | SAN FRANCISCO | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94108 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2021-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 465727883 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Grace Science Foundation | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| In Care Of | % GRACE SCIENCE FOUNDATION | InCareOfNm |
| Business Name Control | GRAC | BusinessNameControlTxt |
| Phone | 6507464591 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1142 CRANE ST 4 | AddressLine1Txt |
| City | MENLO PARK | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94025 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | MATTHEW R WILSEY | PersonNm |
| Person Title | PRESIDENT | PersonTitleTxt |
| Phone | 6507464591 | PhoneNum |
| Signature | 2022-11-15 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | MATTHEW R | PersonFirstNm |
| Person Last | WILSEY | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | XXX-XX-XXXX | SSN |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Rebecca Stidham | PreparerPersonNm |
| PTIN | P01406582 | PTIN |
| Phone | 4154343744 | PhoneNum |
Additional Filer Information AdditionalFilerInformation
| Field | Value | IRS element (for citing) |
|---|---|---|
| Trusted Customer | TrustedCustomerGrp |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2021 | TaxYr |
| Build TS | 2022-09-23 18:48:47Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | MATTHEW R WILSEY | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1142 CRANE ST 4 | AddressLine1Txt |
| City | MENLO PARK | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94025 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $1,327,113 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | www.gracescience.org | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2014 | FormationYr |
| Legal Domicile State | CA | LegalDomicileStateCd |
| Activity Or Mission | THE MISSION OF THE FOUNDATION IS TO SUPPORT AND FUND THE DEVELOPMENT OF LIFE-SAVING TREATMENT FOR | ActivityOrMissionDesc |
| Voting Members Governing Body | 7 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 7 | VotingMembersIndependentCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Total Volunteers | 0 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $1,447,474 | PYContributionsGrantsAmt |
| CY Contributions Grants | $1,325,647 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $6,706 | PYInvestmentIncomeAmt |
| CY Investment Income | $1,466 | CYInvestmentIncomeAmt |
| PY Other Revenue | $0 | PYOtherRevenueAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $1,454,180 | PYTotalRevenueAmt |
| CY Total Revenue | $1,327,113 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $1,373,067 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $885,550 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $0 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $0 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $0 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $79,834 | PYOtherExpensesAmt |
| CY Other Expenses | $227,582 | CYOtherExpensesAmt |
| PY Total Expenses | $1,452,901 | PYTotalExpensesAmt |
| CY Total Expenses | $1,113,132 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $1,279 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $213,981 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $2,884,506 | TotalAssetsBOYAmt |
| Total Assets EOY | $3,128,030 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $386 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $29,929 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $2,884,120 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $3,098,101 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE MISSION OF THE FOUNDATION IS TO SUPPORT AND FUND THE DEVELOPMENT OF LIFE-SAVING TREATMENT FOR PATIENTS THAT ARE DEFICIENT IN THE N-GLYCANESE ENZYME AND THOSE SUFFERING FROM RELATED GENETIC DISEASES. THE ACTIVITIES OF THE FOUNDATION WILL INVOLVE PROVIDING GRANT FUNDING | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $262,743 | ExpenseAmt |
| Grant | $262,743 | GrantAmt |
| Desc | Stanford University NGLY1 Natural History Study (Maura Ruzhnikov) Team continues a natural history study to define the clinical spectrum of the disease and its progression, and define biomarker endpoints for use in therapeutic trials. This study is led by Dr. Maura Ruzhnikov, MD, a child neurologist and medical geneticist focusing on the diagnosis and management of rare neurologic disorders, including genetic epilepsy syndromes, childhood neurodegenerative diseases, and undiagnosed suspected genetic conditions. As of the end of 2021, the study has collected data from more than twenty-nine patients both on-site and remote. The study has characterized development delay, movement symptoms, patient quality of life, epilepsy phenotypes, and has helped establish a biomarker that is universally elevated in patients, providing a potential tool to advance therapy development. The study has followed participants longitudinally over three years. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $141,560 | ExpenseAmt |
| Grant | $141,560 | GrantAmt |
| Desc | University of Texas Southwestern (Yan Lab) Team has been generating and characterizing several mouse models of NGLY1 Deficiency, including models in which the gene is inactivated in certain tissues and conditionally after birth. These mouse models have allowed them to characterize neurological phenotypes, neuropathological changes, inflammation, sensory and motor defects, and disease associated biomarkers. These animal models provide insights into the specific defects that result from NGLY1 loss and establish a foundation for testing candidate therapies, including gene therapies and small molecule drugs. The team has also found that NGLY1 Deficiency in mice triggers a specific innate immune pathway mediated by the cGAS/STING pathway. Using genetic and pharmacological approaches, the team has uncovered three different targets that can be modulated to reduce disease associated phenotypes and improve survival. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $157,500 | ExpenseAmt |
| Grant | $157,500 | GrantAmt |
| Desc | The New York Stem Cell Foundation (NYSCF) Team has developed and validated four additional patient-derived induced pluripotent stem cell (iPSC) lines to complement and expand human cell models of NGLY1 Deficiency. CRISPR-mediated genome editing was used to produce isogenic control lines to establish disease-specific characteristics. Team has further used these iPSC lines to generate human neuronal models of NGLY1 Deficiency and has begun to characterize NGLY1-dependent neuronal phenotypes including changes in cellular architecture, mitochondrial function, intracellular aggregates, neuronal activity, and patterns of gene expression. These models will be leveraged for testing potential therapies to reverse pathologies associated with NGLY1 Deficiency. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (12 entries)
| ExpenseExpenseAmt | GrantGrantAmt | DescDesc |
|---|---|---|
| $83,880 | $83,880 | Stanford University (Dixon and Bertozzi labs) |
| $50,734 | $50,734 | Baylor College of Medicine (Jafar-Nejad Lab) |
| $51,303 | $51,303 | Massachusetts General Hospital (Ruvkun Lab) |
| $32,525 | $32,525 | Univ. of MA Medical School (Gao and Wang Lab) |
| $25,000 | $25,000 | The University of CA at Davis (Cortopassi Lab) |
| $35,290 | $35,290 | HILLTOP LAB ANIMALS, INC. |
| $6,274 | $6,274 | CHARLES RIVER LABORATORIES |
| $18,027 | $18,027 | VIRGINIA COMMONWEALTH UNIVERSITY |
| $13,729 | $13,729 | STANFORD UNIVERSITY |
| $270 | $270 | THE JACKSON LABORATORY |
| $6,265 | $6,265 | TRANSNETYX |
| $450 | $450 | KINSALE HOLDING |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $323,747 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Grant | $323,747 | TotalOtherProgSrvcGrantAmt |
| Total Program Service Expenses | $885,550 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | false | LobbyingActivitiesInd |
| Subject To Proxy Tax | false | SubjectToProxyTaxInd |
| Donor Advised Fund | false | DonorAdvisedFundInd |
| Conservation Easements | false | ConservationEasementsInd |
| Collections Of Art | false | CollectionsOfArtInd |
| Credit Counseling | false | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | false | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | false | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | false | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | false | ReportProgramRelatedInvstInd |
| Report Other Assets | false | ReportOtherAssetsInd |
| Report Other Liabilities | false | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | false | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | false | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | false | ConsolidatedAuditFinclStmtInd |
| School Operating | false | SchoolOperatingInd |
| Foreign Office | false | ForeignOfficeInd |
| Foreign Activities | false | ForeignActivitiesInd |
| More Than5000 K To Org | false | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividualsInd |
| Professional Fundraising | false | ProfessionalFundraisingInd |
| Fundraising Activities | false | FundraisingActivitiesInd |
| Gaming Activities | false | GamingActivitiesInd |
| Operate Hospital | false | OperateHospitalInd |
| Grants To Organizations | Yes (true) | GrantsToOrganizationsInd |
| Grants To Individuals | false | GrantsToIndividualsInd |
| Schedule J Required | false | ScheduleJRequiredInd |
| Tax Exempt Bonds | false | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | false | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | false | PYExcessBenefitTransInd |
| Loan Outstanding | false | LoanOutstandingInd |
| Grant To Related Person | false | GrantToRelatedPersonInd |
| Business Rln With Org Mem | false | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | false | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | false | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | false | DeductibleNonCashContriInd |
| Deductible Art Contribution | false | DeductibleArtContributionInd |
| Terminate Operations | false | TerminateOperationsInd |
| Partial Liquidation | false | PartialLiquidationInd |
| Disregarded Entity | false | DisregardedEntityInd |
| Related Entity | false | RelatedEntityInd |
| Related Organization Ctrl Ent | false | RelatedOrganizationCtrlEntInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 2 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (true) | BackupWthldComplianceInd |
| Employee | 0 | EmployeeCnt |
| Unrelated Bus Incm Over Limit | false | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | false | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | false | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | false | TaxablePartyNotificationInd |
| Nondeductible Contributions | false | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | false | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | false | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | false | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | false | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | false | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | false | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 7 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 7 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (true) | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | false | DelegationOfMgmtDutiesInd |
| Change To Org Documents | false | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | false | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | false | MembersOrStockholdersInd |
| Election Of Board Members | Yes (true) | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | false | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | false | MinutesOfGoverningBodyInd |
| Officer Mailing Address | false | OfficerMailingAddressInd |
| Local Chapters | false | LocalChaptersInd |
| Form990 Provided To Gvrn Body | false | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (true) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | false | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | false | RegularMonitoringEnfrcInd |
| Whistleblower Policy | false | WhistleblowerPolicyInd |
| Document Retention Policy | false | DocumentRetentionPolicyInd |
| Compensation Process CEO | false | CompensationProcessCEOInd |
| Compensation Process Other | false | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | GRACE SCIENCE FOUNDATION | PersonNm |
| Phone | 6507464591 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1142 CRANE ST 4 | AddressLine1Txt |
| City | MENLO PARK | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94025 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (7 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|---|
| Matthew Wilsey | |||||||
| President | 20.0 | 0.0 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Egon Durban | |||||||
| Chief Financial Officer | 1.0 | 0.0 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| KEN DRAZAN | |||||||
| Secretary | 1.0 | 0.0 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Pete Briger | |||||||
| Director | 1.0 | 0.0 | Yes (X) | $0 | $0 | $0 | |
| Chelsea Clinton | |||||||
| Director | 1.0 | 0.0 | Yes (X) | $0 | $0 | $0 | |
| J Taylor Crandall | |||||||
| Director | 1.0 | 0.0 | Yes (X) | $0 | $0 | $0 | |
| Elle Stephens | |||||||
| Director | 1.0 | 0.0 | Yes (X) | $0 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $0 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $0 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 0 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $1,325,647 | AllOtherContributionsAmt |
| Total Contributions | $1,325,647 | TotalContributionsAmt |
| Total Program Service Revenue | $0 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,466 | TotalRevenueColumnAmt |
| Exclusion | $1,466 | ExclusionAmt |
Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Royalties Revenue RoyaltiesRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Rental Income Or Loss RentalIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Real | $0 | RealAmt |
| Personal | $0 | PersonalAmt |
Net Rental Income Or Loss NetRentalIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $0 | FundraisingGrossIncomeAmt |
| Fundraising Direct Expenses | $0 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gaming Gross Income | $0 | GamingGrossIncomeAmt |
| Gaming Direct Expenses | $0 | GamingDirectExpensesAmt |
Net Income From Gaming NetIncomeFromGamingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Sales Of Inventory | $0 | GrossSalesOfInventoryAmt |
| Cost Of Goods Sold | $0 | CostOfGoodsSoldAmt |
Net Income Or Loss NetIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $0 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,327,113 | TotalRevenueColumnAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $1,466 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $885,550 | TotalAmt |
| Program Services | $885,550 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Benefits To Members BenefitsToMembersGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Comp Disqual Persons CompDisqualPersonsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Management FeesForServicesManagementGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $50,548 | TotalAmt |
| Management And General | $50,548 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,618 | TotalAmt |
| Management And General | $6,618 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Prof Fundraising FeesForServicesProfFundraising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $116,829 | TotalAmt |
| Management And General | $116,829 | ManagementAndGeneralAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,891 | TotalAmt |
| Management And General | $1,891 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,565 | TotalAmt |
| Management And General | $2,565 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Royalties RoyaltiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $39,267 | TotalAmt |
| Management And General | $39,267 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Interest InterestGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Payments To Affiliates PaymentsToAffiliatesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $327 | TotalAmt |
| Management And General | $327 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|
| Shipping Fees | $5,359 | $5,359 | $0 |
| Branding/Logo/Video/Website | $113 | $113 | $0 |
| TAXES & LICENSES | $150 | $150 | $0 |
| REIMBURSABLE EXPENSES | $3,915 | $3,915 | $0 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,113,132 | TotalAmt |
| Program Services | $885,550 | ProgramServicesAmt |
| Management And General | $227,582 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,884,506 | BOYAmt |
| EOY | $381,790 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $2,745,587 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Receivables From Officers Etc ReceivablesFromOfficersEtcGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $653 | EOYAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,884,506 | BOYAmt |
| EOY | $3,128,030 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $386 | BOYAmt |
| EOY | $29,929 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Tax Exempt Bond Liabilities TaxExemptBondLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Escrow Account Liability EscrowAccountLiabilityGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Loans From Officers Directors LoansFromOfficersDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Mortg Notes Pybl Scrd Invst Prop MortgNotesPyblScrdInvstPropGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $386 | BOYAmt |
| EOY | $29,929 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Org Does Not Follow FASB117 | Yes (X) | OrgDoesNotFollowFASB117Ind |
Cap Stk Tr Prin Current Funds CapStkTrPrinCurrentFundsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Pd In Cap Srpls Land Bldg Eqp Fund PdInCapSrplsLandBldgEqpFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Rtn Earn Endowment Incm Oth Fnds RtnEarnEndowmentIncmOthFndsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,884,120 | BOYAmt |
| EOY | $3,098,101 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,884,506 | BOYAmt |
| EOY | $3,128,030 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $213,981 | ReconcilationRevenueExpnssAmt |
| Method Of Accounting Cash | Yes (X) | MethodOfAccountingCashInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | false | FSAuditedInd |
| Federal Grant Audit Required | false | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,677,107 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,157,365 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,522,789 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,447,474 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,325,647 | CurrentTaxYearAmt |
| Total | $7,130,382 | TotalAmt |
Tax Rev Levied Orgnztnl Bnft170 TaxRevLeviedOrgnztnlBnft170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Govt Furn Srvc Fclts Vl170 GovtFurnSrvcFcltsVl170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,677,107 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,157,365 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,522,789 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $1,447,474 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,325,647 | CurrentTaxYearAmt |
| Total | $7,130,382 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $2,507,425 | SubstantialContributorsTotAmt |
| Public Support Total170 | $4,622,957 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $7,130,382 | TotalSupportAmt |
| Public Support CY170 | 0.64835 | PublicSupportCY170Pct |
| Public Support PY170 | 0.62200 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule I IRS990ScheduleI
Recipient Table RecipientTable (13 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Recipient EINRecipientEIN |
|---|---|---|---|---|---|---|
| Hilltop Lab Animals Inc | ||||||
| 131 Hilltop Dr | Scottdale | PA | 15683 | $35,290 | NGLY1 | |
| CHARLES RIVER LABORATORIES INTERNATIONAL INC | ||||||
| 251 Ballardvale Street | Wilmington | MA | 01887 | $6,274 | NGLY1 | |
| VIRGINIA COMMONWEALTH UNIVERSITY FOUNDATION | ||||||
| PO BOX 843075 | RICHMOND | VA | 23284 | $18,027 | NGLY1 | 540757884 |
| STANFORD UNIVERSITY | ||||||
| 485 BROADWAY MAIL CODE 8838 | REDWOOD CITY | CA | 94063 | $262,743 | NGLY1 Natural History Study Ruzhnikov lab | 941156365 |
| NEW YORK STEM CELL FOUNDATION INC | ||||||
| 619 WEST 54TH STREET 3RD FL | NEW YORK | NY | 10019 | $157,500 | NGLY1 | 202905531 |
| MASSACHUSETTS GENERAL HOSPITAL | ||||||
| 55 Fruit ST | Boston | MA | 02114 | $51,303 | NGLY1 Ruvkun lab | 041564655 |
| Transnetyx | ||||||
| 8110 Cordova Rd Ste 119 | Cordova | TN | 38016 | $6,265 | NGLY1 | |
| BAYLOR COLLEGE OF MEDICINE | ||||||
| ONE BAYLOR PLAZA BCM 200 | HOUSTON | TX | 77030 | $50,734 | NGLY1 Jafar-Nejad Lab | 741613878 |
| THE REGENT OF THE UNIVERSITY OF CALIFORNIA | ||||||
| 1111 Franklin St 12th floor | Oakland | CA | 94607 | $25,000 | NGLY1 Cortopassi lab | |
| UNIVERSITY OF TEXAS SOUTHWESTERN | ||||||
| 5323 HARRY HINES BLVD | DALLAS | TX | 75390 | $141,560 | NGLY1 Yan Lab | |
| STANFORD UNIVERSITY | ||||||
| 3145 PORTER DRIVE | PALO ALTO | CA | 94304 | $83,880 | NGLY1 Dixon & Bertozzi labs | 941156365 |
| STANFORD UNIVERSITY | ||||||
| 3145 Porter Drive | Palo Alto | CA | 94304 | $13,729 | NGLY1 | 941156365 |
| The University of Massachusetts Medical School | ||||||
| 55 N Lake Ave | Worcester | MA | 01655 | $32,525 | NGLY1 Gao and Wang labs | |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part I Description of Procedure for Monitoring Use of Funds | FormAndLineReferenceDesc |
| Explanation | * BEFORE FUNDING A PRINCIPAL INVESTIGATOR, THE FOUNDATION REQUIRES A DETAILED PROPOSAL WITH OBJECTIVES AND MILESTONES * THE PROPOSALS ARE REVIEWED BY THE FOUNDATION AND SCIENTIFIC ADVISORY BOARD * THE PROPOSALS ARE OFTEN REVISED SEVERAL TIMES TO GET THE CORRECT FIT * Once funded, each principal investigator submits a written summary every quarter * This update is two to three pages in length * The reports discuss progress, highlight roadblocks and identify where they need help *THE FOUNDATION STEPS-IN WHERE APPROPRIATE TO MAKE SURE OBJECTIVES AND MILESTONES ARE MET * IN ADDITION TO QUARTERLY REPORTS, THE FOUNDATION HOLDS A MONTHLY CONFERENCE CALL WHERE TWO TO THREE PRINCIPAL INVESTIGATORS PRESENT THEIR LATEST WORK * BEYOND THE ABOVE TWO INITIATIVES, THE FOUNDATION HOLDS ONE TO TWO IN-PERSON MEETINGS PER YEAR * DR. KEVIN LEE (CHIEF SCIENTIFIC OFFICER), DR. SELINA DWIGHT (PROGRAM MANAGER), AND MATT WILSEY(PRESIDENT) CONTACT RESEARCHERS AND PRINCIPAL INVESTIGATORS ON A REGULAR BASIS VIA EMAIL, PHONE, OR ONE ON ONE MEETINGS THE PRESIDENT ENSURES THAT EVERY DOLLAR IS USED TO SUPPORT THE GRACE SCIENCE FOUNDATION'S MISSION. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (8 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 1 | THE MISSION OF THE FOUNDATION IS TO SUPPORT AND FUND THE DEVELOPMENT OF LIFE-SAVING TREATMENT FOR PATIENTS THAT ARE DEFICIENT IN THE N-GLYCANESE ENZYME AND THOSE SUFFERING FROM RELATED GENETIC DISEASES. THE ACTIVITIES OF THE FOUNDATION WILL INVOLVE PROVIDING GRANT FUNDING TO HOSPITALS AND MEDICAL RESEARCH FACILITIES WHICH ARE CONDUCTING MEDICAL RESEARCH IN VARIOUS FIELDS RELATING TO THE SEARCH FOR UNDERSTANDING AND TREATMENT OF THIS CONDITION, AND FOSTERING COLLABORATION BETWEEN ACADEMIA, RESEARCH INSTITUTIONS, HOSPITALS, PRIVATE COMPANIES, AND GOVERNMENTAL AGENCIES. |
| FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES | Stanford University (Dixon and Bertozzi laboratories) Team has characterized the role of ferroptosis, a form of cell death associated with oxidative stress, in the pathologies associated with NGLY1 deficiency. This study has established that loss of NGLY1 or its substrate NFE2L1 sensitizes cells to ferroptosis, and this ferroptosis sensitivity can be reversed by expression of an activated form of NFE2L1 mimicking that generated by NGLY1-catalyzed protein modification. These studies may help explain the causes of cell dysfunction and loss in NGLY1 Deficiency and suggest potential targets for candidate therapy development. EXPENSES $83,880. INCLUDING GRANTS OF $83,880. REVENUE $0. |
| FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES | Baylor College of Medicine (Jafar-Nejad Lab) Team is using genetic and pharmacological approaches to gain insights into pathways regulated by NGLY1 and potential targets for therapy development. This research has uncovered a link between NGLY1 and AMP-regulated kinase (AMPK) a critical cellular energy sensor. AMPK activity is reduced in animal models of NGLY1 Deficiency and in patient cell lines. Restoring AMPK levels or activity by genetic or pharmacological tools restores energy homeostasis in NGLY1 deficient cells and organisms. Team is researching the mechanisms and cellular contexts of AMPK regulation by NGLY1 and testing potential therapies to reverse AMPK-associated pathologies in NGLY1 Deficiency. EXPENSES $50,734. INCLUDING GRANTS OF $50,734. REVENUE $0. |
| FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES | Massachusetts General Hospital (Ruvkun Lab) Team continued their analysis of the genetic modifiers of proteasome dysfunction that they previously identified in PNG-1 / NGLY1 deficient C. elegans. They have continued to characterize pathways that can be targeted to restore function in NGLY1 deficient animals, insights that could translate into a potential therapy for the disease in humans. They have uncovered links between NGLY1/NFE2L1 and energy homeostasis, protein synthesis, nucleotide levels, and endoplasmic reticulum (ER) stress. These data highlight pathways for therapy development and suggest possible links to more common neurodegenerative diseases. EXPENSES $51,303. INCLUDING GRANTS OF $51,303. REVENUE $0. |
| FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES | The University of Massachusetts Medical School (Gao and Wang laboratories) Team has imported and characterized a novel mouse model of NGLY1 Deficiency, developed at the University of Texas Southwestern (Program 2 above) for use in complementary studies evaluating AAV-mediated gene therapies for treatment of NGLY1 Deficiency. In this model, the Ngly1 gene is inactivated after birth, which will permit studies that evaluate therapeutic benefit at different times and with different routes of treatment administration. EXPENSES $32,525. INCLUDING GRANTS OF $32,525. REVENUE $0. |
| FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES | The University of California at Davis (Cortopassi Lab) Team is evaluating the effect of NGLY1 Deficiency on mitochondrial function using patient-derived cellular models. They have imported and characterized NGLY1 patient and control fibroblast cell lines, and demonstrated reduced mitochondrial function and mitochondrial content relative to control lines. Team is evaluating the effect of NFE2L2 activator compounds and other tool compounds known to enhance mitochondrial activity for their ability to rescue NGLY1-dependent mitochondrial deficits. EXPENSES $25,000. INCLUDING GRANTS OF $25,000. REVENUE $0. |
| FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES | Hilltop Lab Animals, Inc.Team has imported and established a colony of Ngly1 knockout mice for use in testing therapies to treat NGLY1 Deficiency. A breeding colony has been established, and mutant phenotypes have been characterized. Work has begun to use these model systems to test drug candidates for their ability to rescue NGLY1 Deficiency-associated neurological symptoms and establish a framework for eventual human clinical trials. EXPENSES $35,290. INCLUDING GRANTS OF $35,290. REVENUE $0. |
| FORM 990 PART IX LINE 11G | DESCRIPTION:CONSULTING TOTAL FEES:116829 |
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