Liabilities / Assets
59th percentile
Tied with the lowest-debt nonprofits in its peer group.
EIN 93-1320953 • 501(c)3 • West Linn, OR
Profile
We work with families, researchers, regulators, industry, and policy makers to improve the quality of life for those with MLD, develop and improve therapies for MLD, and we influence & fund research for a cure. Metachromatic leukodystrophy (MLD) is a rare genetic neuro-metabolic degenerative terminal condition affecting people, predominantly infants and children, throughout the world. Our slogan, "We C.A.R.E."(tm) reflects our mission of Compassion, Awareness, Research and Education. Today there are not adequate therapies and there is no cure. The MLD Foundation was formed in May 2001.
Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.
Liabilities / Assets
59th percentile
Tied with the lowest-debt nonprofits in its peer group.
Liabilities / Revenue
61st percentile
Tied with the lowest-debt nonprofits in its peer group.
Net Margin
22nd percentile
Higher net margin than 22% of similar nonprofits.
Top Officer Pay
84th percentile
Higher top officer pay than 84% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
74th percentile
Faster asset growth than 74% of similar nonprofits.
Revenue Growth
30th percentile
Faster revenue growth than 30% of similar nonprofits.
Assets
Up$29,430
Up $4,121 (+16%) from 2023
Liabilities
Flat$0
Flat from 2023
Net Assets
Up$29,430
Up $4,121 (+16%) from 2023
Revenue
Down$111,163
Down $30,542 (-22%) from 2023
Expenses
Down$135,765
Down $15,849 (-10%) from 2023
Net Income
Down-$24,602
Down $14,693 (-148%) from 2023
Most recent year
2024 • Form 990EZDetailed filing. Detailed filing data is available for this year.
MLD Foundation works with families, researchers, regulators, industry, and policy makers to improve the quality of life for those with MLD including standards of clinical care and clinical research excellence, develop and improve therapies for MLD, and influence & fund research for a cure. Metachromatic leukodystrophy (MLD) is a rare genetic neuro-metabolic degenerative terminal condition affecting people, predominantly infants and children, throughout the world. Our slogan, "We C.A.R.E."(tm) reflects our mission of Compassion, Awareness, Research and Education. Today there are not adequate therapies and there is no cure. Clinical care and diagnostics, including newborn screening, are improving but have much more to improve upon. The MLD Foundation was formed in May 2001.
MLD Foundation works with families, researchers, regulators, industry, and policy-makers to improve the quality of life for those with MLD including standards of clinical care and clinical research excellence, develop and implement newborn screening tests and policies, develop and improve therapies for MLD, and influence & fund research for a cure. Metachromatic leukodystrophy (MLD) is a rare genetic neuro-metabolic degenerative terminal condition affecting people, predominantly infants and children, throughout the world. Our slogan, "We C.A.R.E."(R) reflects our mission of Compassion, Awareness, Research, and Education. Today there are no adequate therapies in the US and there is no cure. Clinical care and diagnostics including newborn screening, are improving but have much more to improve upon. The MLD Foundation was formed in May 2001 and serves newly diagnosed families as well as those at all stages of the MLD journey in the US and internationally.
| Description | Grants | Expenses |
|---|---|---|
| COMPASSSION and EDUCATION ... Hosted annual MLD Family Conference(R) in Atlanta, GA bringing families together in person and virtual, along with researchers, clinicians and biopharma parters . Continued online, telephone, and in person family visits in their hometowns. Hosted periodic men's, women's, and couple's virtual gatherings. MLD Family Gatherings(tm) bring families and small family groups where an MLD Family Conference is not possible. These visits bring families in geography together to meet each other - often for the very first time to educate and further connect those families with the MLD Foundation and other families. We share research and clinical trial updates, answer questions, and allocate the bulk of the time to building relationships between the families. (approx 20 families). Direct Quality of Life case management for several families. | $0 | $48,581 |
| INFLUENCE RESEARCH & AWARENESS - Regularly attend medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, RDCRN/GLIA-LCN meeting, visiting the FDA, NIH, NINDS, World RARE Disease Day events in DC, HHS/HRS/NICHD Newborn Screening meetings, continued RUSP Roundtable meetings, continued support and advancement of MLD newborn screening pilot study, preparing and submitting RUSP nomination, and broad NBS implementation program, continued development relationships with several biotech/pharma companies, and visited researchers at their home facilities representing the interests of MLD families and other researchers. Supported global clinical trial recruiting and development of MLD standards of care. Working towards standards for clinical research excellence to improve quality of life for patients/families and further lysosomal and leukodystrophy research. EDUCATION ... Visited NIH, FDA, Capitol Hill to educate on issues of importance to MLD affected families, researchers, and industry. World RARE disease day events, FDA rare disease workshops, HHS/ACHDNC (newborn screening) testimony. Focus on the implementation of electronic medical records, orphan disease research, registries, genotype-phenotype correlation and newborn screening for rare diseases. Host numerous websites to inform, educate, influence, and support MLD families and research. Engaged in two gene therapy value assessemnts (NICE and ICER). | $0 | $36,911 |
| NEWBORN SCREENING and DIAGNOSTICS ... Early detection and diagnosis is critical for the best outcomes from current and emerging therapies. MLD Foundation continues to drive pilot studies to validate the screen and the NBS diagnostic processes. Established a MLD NBS Expert Advisory Group in Feb 2020 to gather and assess all data justifying the implementation of a MLD NBS, leading the submission of a RUSP nomination to the federal ACHDNC HRSA/HHS committee in August 2024, and collaborating to generate flows for the referrals of babies diagnosed with MLD. These materials will be used for state by state NBS implementation in the US and abroad. Similar efforts are being organized for diagnostic confirmation at later ages. | $0 | $28,733 |
| EDUCATION and PATIENT POWERED SUPPORT AND RESEARCH ... Updated website to MLD.foundation, which is the world's premiere source of online MLD information. The MLD Family(tm) Discussion List and the MLD Family(tm) FaceBook group are the world's largest electronic gathering of families affected by MLD. They share experiences, compassion, support, and ideas with each other to provide the highest quality of life to those affected by MLD. Continued support and transition of MLD Patient Powered Registry(tm) which captures family demographic information to a new platform. This registry is one of the largest international databases of MLD family histories. Data is compiled and shared in a de-identified manner to improve MLD research, natural history studies, and clinical trials. Also includes electronic and paper publications. (800+ families). Continued work in support of clinical trials in Europe, the US, South America, and the far east. Actively developing and advancing policy to support MLD and rare diseases. Active participant in UK NICE value assessment. Selected as Expert Reviewer for US-based ICER value assessment. Both reviews resulted in positive value assesments. | $0 | $10,919 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Christine Hoffmann | Director | - | $0 | - | - |
| Marc Patterson MD | Director | - | $0 | - | - |
| Wilson Smith | Director | - | $0 | - | - |
| Teryn Suhr | Executive Director | PT | $0 | - | - |
| Dean Suhr | President | FT | $0 | - | - |
“Description;Amount^MLD Family Conference 2025;54824|MLD Family Gatherings;2155|Research and other conference expenses;55889|Bank charges;530|Dues and Subscriptions;589|Government Fees;200|Office and operations;10811|Program expenses;496^Total;125494^”
“adjustment reflecting write off of unfulfilled pledges”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
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| IRS990EZ/GamingGrossIncomeAmt | 0 | 0 |
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| IRS990EZ/GrossProfitLossSlsOfInvntryAmt | 0 | 0 |
| IRS990EZ/GrossReceiptsAmt | 0 | 111163 |
| IRS990EZ/GrossSalesOfInventoryAmt | 0 | 0 |
| IRS990EZ/InfoInScheduleOPartIInd | 0 | X |
| IRS990EZ/InvestmentIncomeAmt | 0 | 2 |
| IRS990EZ/LandAndBuildingsGrp/BOYAmt | 0 | 0 |
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| IRS990EZ/MethodOfAccountingCashInd | 0 | X |
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| IRS990EZ/NetAssetsOrFundBalancesEOYAmt | 0 | 29430 |
| IRS990EZ/NetAssetsOrFundBalancesGrp/BOYAmt | 0 | 57820 |
| IRS990EZ/NetAssetsOrFundBalancesGrp/EOYAmt | 0 | 29430 |
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| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 4 | 40.00 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 0 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 1 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 2 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt | 3 | 0 |
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| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 1 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 2 | 0 |
| IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt | 3 | 0 |
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| IRS990EZ/OperateHospitalInd | 0 | 0 |
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| IRS990EZ/OrganizationHadUBIInd | 0 | 0 |
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| IRS990EZ/OtherAssetsTotalDetail/EOYAmt | 0 | 0 |
| IRS990EZ/OtherChangesInNetAssetsAmt | 0 | -3788 |
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| IRS990EZ/OtherRevenueTotalAmt | 0 | 0 |
| IRS990EZ/PartVIHghstPdCntrctProfSrvcTxt | 0 | NONE |
| IRS990EZ/PartVIOfCompOfHghstPdEmplTxt | 0 | NONE |
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| IRS990EZ/PrimaryExemptPurposeTxt | 0 | MLD Foundation works with families, researchers, regulators, industry, and policy-makers to improve the quality of life for those with MLD including standards of clinical care and clinical research excellence, develop and implement newborn screening tests and policies, develop and improve therapies for MLD, and influence & fund research for a cure. Metachromatic leukodystrophy (MLD) is a rare genetic neuro-metabolic degenerative terminal condition affecting people, predominantly infants and children, throughout the world. Our slogan, "We C.A.R.E."(R) reflects our mission of Compassion, Awareness, Research, and Education. Today there are no adequate therapies in the US and there is no cure. Clinical care and diagnostics including newborn screening, are improving but have much more to improve upon. The MLD Foundation was formed in May 2001 and serves newly diagnosed families as well as those at all stages of the MLD journey in the US and internationally. |
| IRS990EZ/PrintingPublicationsPostageAmt | 0 | 142 |
| IRS990EZ/ProgramServiceRevenueAmt | 0 | 0 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 0 | COMPASSSION and EDUCATION ... Hosted annual MLD Family Conference(R) in Atlanta, GA bringing families together in person and virtual, along with researchers, clinicians and biopharma parters . Continued online, telephone, and in person family visits in their hometowns. Hosted periodic men's, women's, and couple's virtual gatherings. MLD Family Gatherings(tm) bring families and small family groups where an MLD Family Conference is not possible. These visits bring families in geography together to meet each other - often for the very first time to educate and further connect those families with the MLD Foundation and other families. We share research and clinical trial updates, answer questions, and allocate the bulk of the time to building relationships between the families. (approx 20 families). Direct Quality of Life case management for several families. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 1 | INFLUENCE RESEARCH & AWARENESS - Regularly attend medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, RDCRN/GLIA-LCN meeting, visiting the FDA, NIH, NINDS, World RARE Disease Day events in DC, HHS/HRS/NICHD Newborn Screening meetings, continued RUSP Roundtable meetings, continued support and advancement of MLD newborn screening pilot study, preparing and submitting RUSP nomination, and broad NBS implementation program, continued development relationships with several biotech/pharma companies, and visited researchers at their home facilities representing the interests of MLD families and other researchers. Supported global clinical trial recruiting and development of MLD standards of care. Working towards standards for clinical research excellence to improve quality of life for patients/families and further lysosomal and leukodystrophy research. EDUCATION ... Visited NIH, FDA, Capitol Hill to educate on issues of importance to MLD affected families, researchers, and industry. World RARE disease day events, FDA rare disease workshops, HHS/ACHDNC (newborn screening) testimony. Focus on the implementation of electronic medical records, orphan disease research, registries, genotype-phenotype correlation and newborn screening for rare diseases. Host numerous websites to inform, educate, influence, and support MLD families and research. Engaged in two gene therapy value assessemnts (NICE and ICER). |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 2 | NEWBORN SCREENING and DIAGNOSTICS ... Early detection and diagnosis is critical for the best outcomes from current and emerging therapies. MLD Foundation continues to drive pilot studies to validate the screen and the NBS diagnostic processes. Established a MLD NBS Expert Advisory Group in Feb 2020 to gather and assess all data justifying the implementation of a MLD NBS, leading the submission of a RUSP nomination to the federal ACHDNC HRSA/HHS committee in August 2024, and collaborating to generate flows for the referrals of babies diagnosed with MLD. These materials will be used for state by state NBS implementation in the US and abroad. Similar efforts are being organized for diagnostic confirmation at later ages. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 3 | EDUCATION and PATIENT POWERED SUPPORT AND RESEARCH ... Updated website to MLD.foundation, which is the world's premiere source of online MLD information. The MLD Family(tm) Discussion List and the MLD Family(tm) FaceBook group are the world's largest electronic gathering of families affected by MLD. They share experiences, compassion, support, and ideas with each other to provide the highest quality of life to those affected by MLD. Continued support and transition of MLD Patient Powered Registry(tm) which captures family demographic information to a new platform. This registry is one of the largest international databases of MLD family histories. Data is compiled and shared in a de-identified manner to improve MLD research, natural history studies, and clinical trials. Also includes electronic and paper publications. (800+ families). Continued work in support of clinical trials in Europe, the US, South America, and the far east. Actively developing and advancing policy to support MLD and rare diseases. Active participant in UK NICE value assessment. Selected as Expert Reviewer for US-based ICER value assessment. Both reviews resulted in positive value assesments. |
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| IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus1YearAmt | 0 | 0 |
| IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus4YearsAmt | 0 | 0 |
| IRS990ScheduleA/Post1975UBTIGrp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0.61776 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.66460 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 360565 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt | 0 | 25000 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt | 0 | 20000 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt | 0 | 26914 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt | 0 | 65000 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt | 0 | 86175 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 223089 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt | 0 | 25000 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt | 0 | 20000 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt | 0 | 26914 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt | 0 | 65000 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus4YearsAmt | 0 | 86175 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt | 0 | 223089 |
| IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearAmt | 0 | 0 |
| IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus1YearAmt | 0 | 0 |
| IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 0 |
| IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind | 0 | X |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt | 0 | 111161 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 141705 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 78235 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 116690 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 135863 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 583654 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 111163 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 141706 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 78237 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 116692 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 135871 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 583669 |
| IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorNum | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine2 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt | 0 | RESTRICTED |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | Description;Amount^MLD Family Conference 2025;54824|MLD Family Gatherings;2155|Research and other conference expenses;55889|Bank charges;530|Dues and Subscriptions;589|Government Fees;200|Office and operations;10811|Program expenses;496^Total;125494^ |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | adjustment reflecting write off of unfulfilled pledges |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990-EZ, Part I, Line 16 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990-EZ, Part I, Line 20 |
| ReasonableCauseExplanation/ExplanationTxt | 0 | A timely extension request was filed and acknowledged by the IRS |
| ReturnHeader/BuildTS | 0 | 2025-03-06 01:10:19Z |
| ReturnHeader/BusinessOfficerGrp/PersonNm | 0 | Dean Suhr |
| ReturnHeader/BusinessOfficerGrp/PersonTitleTxt | 0 | President |
| ReturnHeader/BusinessOfficerGrp/PhoneNum | 0 | 5036564808 |
| ReturnHeader/BusinessOfficerGrp/SignatureDt | 0 | 2025-11-13 |
| ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt | 0 | MLD FOUNDATION |
| ReturnHeader/Filer/BusinessNameControlTxt | 0 | MLDF |
| ReturnHeader/Filer/EIN | 0 | 931320953 |
| ReturnHeader/Filer/PhoneNum | 0 | 5036564808 |
| ReturnHeader/Filer/USAddress/AddressLine1Txt | 0 | 21345 Miles Drive |
| ReturnHeader/Filer/USAddress/CityNm | 0 | West Linn |
| ReturnHeader/Filer/USAddress/StateAbbreviationCd | 0 | OR |
| ReturnHeader/Filer/USAddress/ZIPCd | 0 | 97068 |
| ReturnHeader/IRSResponsiblePrtyInfoCurrInd | 0 | 1 |
| ReturnHeader/ReturnTs | 0 | 2025-11-13T02:56:51-07:00 |
| ReturnHeader/ReturnTypeCd | 0 | 990EZ |
| ReturnHeader/TaxPeriodBeginDt | 0 | 2024-01-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2024-12-31 |
| ReturnHeader/TaxYr | 0 | 2024 |
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