Civic Intelligence

MLD Foundation

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.

21345 Miles DriveWest Linn, OR 97068

mldfoundation.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

59th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

501(c)3 • <$500k nonprofits • Source year 2024

Liabilities / Revenue

61st percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

501(c)3 • <$500k nonprofits • Source year 2024

Net Margin

22nd percentile

-22%

Higher net margin than 22% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Top Officer Pay

84th percentile

$0

Higher top officer pay than 84% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

501(c)3 • <$500k nonprofits • Source year 2024

Asset Growth

74th percentile

16%

Faster asset growth than 74% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Revenue Growth

30th percentile

-22%

Faster revenue growth than 30% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

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

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$100K$50K$0Assets 2010: $47,190Liabilities 2010: $2,852Net Assets 2010: $44,3382010Assets 2011: $52,367Liabilities 2011: $326Net Assets 2011: $52,0412011Assets 2012: $65,832Liabilities 2012: $11,799Net Assets 2012: $54,0332012Assets 2013: $84,102Liabilities 2013: $0Net Assets 2013: $84,1022013Assets 2014: $81,416Liabilities 2014: $1,801Net Assets 2014: $79,6152014Assets 2015: $94,275Liabilities 2015: $3,977Net Assets 2015: $90,2982015Assets 2016: $56,697Liabilities 2016: $5,099Net Assets 2016: $51,5982016Assets 2017: $25,813Liabilities 2017: $89Net Assets 2017: $25,7242017Assets 2018: $25,986Liabilities 2018: $0Net Assets 2018: $25,9862018Assets 2019: $26,854Liabilities 2019: $1,016Net Assets 2019: $25,8382019Assets 2020: $60,909Liabilities 2020: $0Net Assets 2020: $60,9092020Assets 2021: $53,888Liabilities 2021: $0Net Assets 2021: $53,8882021Assets 2022: $36,447Liabilities 2022: $0Net Assets 2022: $36,4472022Assets 2023: $25,309Liabilities 2023: $0Net Assets 2023: $25,3092023Assets 2024: $29,430Liabilities 2024: $0Net Assets 2024: $29,4302024

Highlighted filing

2024

Assets$29,430
Liabilities$0
Net Assets$29,430

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$200K$100K$0-$100KRevenue 2010: $80,367Expenses 2010: $77,358Net Income 2010: $3,0092010Revenue 2011: $94,240Expenses 2011: $94,213Net Income 2011: $272011Revenue 2012: $66,542Expenses 2012: $66,780Net Income 2012: -$2382012Revenue 2013: $126,712Expenses 2013: $94,103Net Income 2013: $32,6092013Revenue 2014: $160,710Expenses 2014: $160,362Net Income 2014: $3482014Revenue 2015: $157,237Expenses 2015: $148,929Net Income 2015: $8,3082015Revenue 2016: $140,563Expenses 2016: $174,552Net Income 2016: -$33,9892016Revenue 2017: $92,063Expenses 2017: $117,937Net Income 2017: -$25,8742017Revenue 2018: $126,553Expenses 2018: $126,292Net Income 2018: $2612018Revenue 2019: $160,222Expenses 2019: $159,938Net Income 2019: $2842019Revenue 2020: $135,871Expenses 2020: $99,747Net Income 2020: $36,1242020Revenue 2021: $116,696Expenses 2021: $124,265Net Income 2021: -$7,5692021Revenue 2022: $78,235Expenses 2022: $95,676Net Income 2022: -$17,4412022Revenue 2023: $141,705Expenses 2023: $151,614Net Income 2023: -$9,9092023Revenue 2024: $111,163Expenses 2024: $135,765Net Income 2024: -$24,6022024

Highlighted filing

2024

Revenue$111,163
Expenses$135,765
Net Income-$24,602

Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$0.29$0.00$0.29$1.11$1.36$0.25
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.25$0.00$0.25$1.42$1.52$0.10
2022Detailed filing. Detailed filing data is available for this year.$0.36$0.00$0.36$0.78$0.96$0.17
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.54$0.00$0.54$1.17$1.24$0.08
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.61$0.00$0.61$1.36$1.00$0.36
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.27$0.01$0.26$1.60$1.60$0.00
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.26$0.00$0.26$1.27$1.26$0.00
2017XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.26$0.00$0.26$0.92$1.18$0.26
2016Detailed filing. Detailed filing data is available for this year.$0.57$0.05$0.52$1.41$1.75$0.34
2015Detailed filing. Detailed filing data is available for this year.$0.94$0.04$0.90$1.57$1.49$0.08
2014XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.81$0.02$0.80$1.61$1.60$0.00
2013Detailed filing. Detailed filing data is available for this year.$0.84$0.00$0.84$1.27$0.94$0.33
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.66$0.12$0.54$0.67$0.67$0.00
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.52$0.00$0.52$0.94$0.94$0.00
2010XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.47$0.03$0.44$0.80$0.77$0.03
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 13, 2025
Return Version
2024v5.0
Gross Receipts
$111,163
Mission and Program Overview

Mission

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.

Program Services

DescriptionGrantsExpenses
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
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Christine HoffmannDirector-$0--
Marc Patterson MDDirector-$0--
Wilson SmithDirector-$0--
Teryn SuhrExecutive DirectorPT$0--
Dean SuhrPresidentFT$0--
Filing and Contact Details

Filer

Filer Name
Mld Foundation
EIN
93-1320953
Phone
5036564808
Address
21345 Miles Drive, West Linn, OR 97068

Signing Officer

Name
Dean Suhr
Title
President
Phone
5036564808
Signed
2025-11-13
Supplemental Narrative

Additional Explanations

Form 990-EZ, Part I, Line 16

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^

Form 990-EZ, Part I, Line 20

adjustment reflecting write off of unfulfilled pledges

Raw XML Appendix255 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
IRS990EZ/ActivitiesNotPreviouslyRptInd00
IRS990EZ/BenefitsPaidToOrForMembersAmt00
IRS990EZ/BooksInCareOfDetail/PersonNm0Dean Suhr
IRS990EZ/BooksInCareOfDetail/PhoneNum05036564808
IRS990EZ/BooksInCareOfDetail/USAddress/AddressLine1Txt021345 Miles Drive
IRS990EZ/BooksInCareOfDetail/USAddress/CityNm0West Linn
IRS990EZ/BooksInCareOfDetail/USAddress/StateAbbreviationCd0OR
IRS990EZ/BooksInCareOfDetail/USAddress/ZIPCd097068
IRS990EZ/CashSavingsAndInvestmentsGrp/BOYAmt057820
IRS990EZ/CashSavingsAndInvestmentsGrp/EOYAmt029430
IRS990EZ/ChgMadeToOrgnzngDocNotRptInd00
IRS990EZ/ContributionsGiftsGrantsEtcAmt0111161
IRS990EZ/CostOfGoodsSoldAmt00
IRS990EZ/CostOrOtherBasisExpenseSaleAmt00
IRS990EZ/DirectIndirectPltclExpendAmt00
IRS990EZ/DonorAdvisedFndsInd00
IRS990EZ/EngagedInExcessBenefitTransInd00
IRS990EZ/ExcessOrDeficitForYearAmt0-24602
IRS990EZ/FeesAndOtherPymtToIndCntrctAmt04824
IRS990EZ/FiledScheduleAInd01
IRS990EZ/ForeignFinancialAccountInd00
IRS990EZ/ForeignOfficeInd00
IRS990EZ/Form1120PolFiledInd00
IRS990EZ/Form990TotalAssetsGrp/BOYAmt057820
IRS990EZ/Form990TotalAssetsGrp/EOYAmt029430
IRS990EZ/FundraisingGrossIncomeAmt00
IRS990EZ/GainOrLossFromSaleOfAssetsAmt00
IRS990EZ/GamingGrossIncomeAmt00
IRS990EZ/GrantsAndSimilarAmountsPaidAmt00
IRS990EZ/GrossProfitLossSlsOfInvntryAmt00
IRS990EZ/GrossReceiptsAmt0111163
IRS990EZ/GrossSalesOfInventoryAmt00
IRS990EZ/InfoInScheduleOPartIInd0X
IRS990EZ/InvestmentIncomeAmt02
IRS990EZ/LandAndBuildingsGrp/BOYAmt00
IRS990EZ/LandAndBuildingsGrp/EOYAmt00
IRS990EZ/LobbyingActivitiesInd00
IRS990EZ/MadeLoansToFromOfficersInd00
IRS990EZ/MembershipDuesAmt00
IRS990EZ/MethodOfAccountingCashInd0X
IRS990EZ/NetAssetsOrFundBalancesBOYAmt057820
IRS990EZ/NetAssetsOrFundBalancesEOYAmt029430
IRS990EZ/NetAssetsOrFundBalancesGrp/BOYAmt057820
IRS990EZ/NetAssetsOrFundBalancesGrp/EOYAmt029430
IRS990EZ/OccupancyRentUtltsAndMaintAmt05305
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt01
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt11
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt21
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt330
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt440.00
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt00
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt10
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt20
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt30
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt40
IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt00
IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt10
IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt20
IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt30
IRS990EZ/OfficerDirectorTrusteeEmplGrp/EmployeeBenefitProgramAmt40
IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt00
IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt10
IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt20
IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt30
IRS990EZ/OfficerDirectorTrusteeEmplGrp/ExpenseAccountOtherAllwncAmt40
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm0Christine Hoffmann
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm1Marc Patterson MD
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm2Wilson Smith
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm3Teryn Suhr
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm4Dean Suhr
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt0Director
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt1Director
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt2Director
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt3Executive Director
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt4President
IRS990EZ/OperateHospitalInd00
IRS990EZ/Organization501c3Ind0X
IRS990EZ/OrganizationDissolvedEtcInd00
IRS990EZ/OrganizationHadUBIInd00
IRS990EZ/OtherAssetsTotalDetail/BOYAmt00
IRS990EZ/OtherAssetsTotalDetail/EOYAmt00
IRS990EZ/OtherChangesInNetAssetsAmt0-3788
IRS990EZ/OtherExpensesTotalAmt0125494
IRS990EZ/OtherRevenueTotalAmt00
IRS990EZ/PartVIHghstPdCntrctProfSrvcTxt0NONE
IRS990EZ/PartVIOfCompOfHghstPdEmplTxt0NONE
IRS990EZ/PoliticalCampaignActyInd00
IRS990EZ/PrimaryExemptPurposeTxt0MLD 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/PrintingPublicationsPostageAmt0142
IRS990EZ/ProgramServiceRevenueAmt00
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt0COMPASSSION 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/DescriptionProgramSrvcAccomTxt1INFLUENCE 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/DescriptionProgramSrvcAccomTxt2NEWBORN 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/DescriptionProgramSrvcAccomTxt3EDUCATION 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.
IRS990EZ/ProgramSrvcAccomplishmentGrp/GrantsAndAllocationsAmt00
IRS990EZ/ProgramSrvcAccomplishmentGrp/GrantsAndAllocationsAmt10
IRS990EZ/ProgramSrvcAccomplishmentGrp/GrantsAndAllocationsAmt20
IRS990EZ/ProgramSrvcAccomplishmentGrp/GrantsAndAllocationsAmt30
IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt048581
IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt136911
IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt228733
IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt310919
IRS990EZ/ProhibitedTaxShelterTransInd00
IRS990EZ/RelatedOrganizationCtrlEntInd00
IRS990EZ/SalariesOtherCompEmplBnftAmt00
IRS990EZ/SaleOfAssetsGrossAmt00
IRS990EZ/SchoolOperatingInd00
IRS990EZ/SpecialEventsDirectExpensesAmt00
IRS990EZ/SpecialEventsNetIncomeLossAmt00
IRS990EZ/StatesWhereCopyOfReturnIsFldCd0OR
IRS990EZ/SubjectToProxyTaxInd00
IRS990EZ/SumOfTotalLiabilitiesGrp/BOYAmt00
IRS990EZ/SumOfTotalLiabilitiesGrp/EOYAmt00
IRS990EZ/TanningServicesProvidedInd00
IRS990EZ/TaxImposedOnOrganizationMgrAmt00
IRS990EZ/TaxImposedUnderIRC4911Amt00
IRS990EZ/TaxImposedUnderIRC4912Amt00
IRS990EZ/TaxImposedUnderIRC4955Amt00
IRS990EZ/TaxReimbursedByOrganizationAmt00
IRS990EZ/TotalExpensesAmt0135765
IRS990EZ/TotalProgramServiceExpensesAmt0125144
IRS990EZ/TotalRevenueAmt0111163
IRS990EZ/TransactionWithControlEntInd00
IRS990EZ/TrnsfrExmptNonChrtblRltdOrgInd00
IRS990EZ/TypeOfOrganizationCorpInd0X
IRS990EZ/WebsiteAddressTxt0https://MLD.foundation
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt00
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt00
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt0111161
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt0141705
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt078235
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt0116690
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt0135863
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt0583654
IRS990ScheduleA/GovtFurnSrvcFcltsVl509Grp/CurrentTaxYearAmt00
IRS990ScheduleA/GovtFurnSrvcFcltsVl509Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/GovtFurnSrvcFcltsVl509Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/GovtFurnSrvcFcltsVl509Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/GovtFurnSrvcFcltsVl509Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/GovtFurnSrvcFcltsVl509Grp/TotalAmt00
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt01
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt02
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt08
IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt015
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt00
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt00
IRS990ScheduleA/GrossReceiptsNonUnrltBusGrp/CurrentTaxYearAmt00
IRS990ScheduleA/GrossReceiptsNonUnrltBusGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/GrossReceiptsNonUnrltBusGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/GrossReceiptsNonUnrltBusGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/GrossReceiptsNonUnrltBusGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/GrossReceiptsNonUnrltBusGrp/TotalAmt00
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt01
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt02
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt08
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt015
IRS990ScheduleA/InvestmentIncomeCYPct00.00003
IRS990ScheduleA/InvestmentIncomePYPct00.00004
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/CurrentTaxYearAmt00
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/TotalAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/OtherIncome509Grp/TotalAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/TotalAmt00
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.61776
IRS990ScheduleA/PublicSupportPY509Pct00.66460
IRS990ScheduleA/PublicSupportTotal509Amt0360565
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt025000
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt020000
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt026914
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt065000
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt086175
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt0223089
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt025000
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt020000
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt026914
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt065000
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus4YearsAmt086175
IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt0223089
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/TotalAmt00
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind0X
IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt0111161
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt0141705
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt078235
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0116690
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0135863
IRS990ScheduleA/Total509Grp/TotalAmt0583654
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt0111163
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt0141706
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt078237
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0116692
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0135871
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt0583669
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0Description;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/ExplanationTxt1adjustment reflecting write off of unfulfilled pledges
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990-EZ, Part I, Line 16
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990-EZ, Part I, Line 20
ReasonableCauseExplanation/ExplanationTxt0A timely extension request was filed and acknowledged by the IRS
ReturnHeader/BuildTS02025-03-06 01:10:19Z
ReturnHeader/BusinessOfficerGrp/PersonNm0Dean Suhr
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0President
ReturnHeader/BusinessOfficerGrp/PhoneNum05036564808
ReturnHeader/BusinessOfficerGrp/SignatureDt02025-11-13
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0MLD FOUNDATION
ReturnHeader/Filer/BusinessNameControlTxt0MLDF
ReturnHeader/Filer/EIN0931320953
ReturnHeader/Filer/PhoneNum05036564808
ReturnHeader/Filer/USAddress/AddressLine1Txt021345 Miles Drive
ReturnHeader/Filer/USAddress/CityNm0West Linn
ReturnHeader/Filer/USAddress/StateAbbreviationCd0OR
ReturnHeader/Filer/USAddress/ZIPCd097068
ReturnHeader/IRSResponsiblePrtyInfoCurrInd01
ReturnHeader/ReturnTs02025-11-13T02:56:51-07:00
ReturnHeader/ReturnTypeCd0990EZ
ReturnHeader/TaxPeriodBeginDt02024-01-01
ReturnHeader/TaxPeriodEndDt02024-12-31
ReturnHeader/TaxYr02024

Document Assets

No mirrored PDF or thumbnail assets are attached yet.