Civic Intelligence

MLD Foundation

990EZ • Fiscal year 2023 • EIN 93-1320953

Jan 01, 2023 to Dec 31, 2023 • Filed on Nov 15, 2024

21345 Miles DriveWest Linn, OR 97068

(503) 656-4808

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

58th percentile

0.00x

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

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Liabilities / Revenue

59th percentile

0.00x

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

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Net Margin

31st percentile

-7.0%

Higher net margin than 31% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Top Officer Pay

78th percentile

$0

Higher top officer pay than 78% of similar nonprofits.

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

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Asset Growth

17th percentile

-31%

Faster asset growth than 17% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Annualized from 2022 to 2023

Revenue Growth

87th percentile

81%

Faster revenue growth than 87% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Annualized from 2022 to 2023

Assets

Down

$25,309

Down $11,138 (-31%) from 2022

Net Assets

Down

$25,309

Down $11,138 (-31%) from 2022

Liabilities

Flat

$0

Flat from 2022

Revenue

Up

$141,705

Up $63,470 (+81%) from 2022

Expenses

Up

$151,614

Up $55,938 (+58%) from 2022

Net Income

Up

-$9,909

Up $7,532 (+43%) from 2022

Historical Trend

Balance Sheet Trend

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$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

2023

Assets$25,309
Liabilities$0
Net Assets$25,309

Operations Trend

Revenue, expenses, and net income across loaded years, with this 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

2023

Revenue$141,705
Expenses$151,614
Net Income-$9,909
Jump To
Filing Snapshot
Filing Period
Jan 1, 2023 to Dec 31, 2023
Signed
Nov 15, 2024
Return Version
2023v5.0
Gross Receipts
$141,705
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 Knoxville, TN 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 GatheringsTM 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.$46,920$63,890
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 preparation of a RUSP nomination for the federal ACHDNC HRSA/HHS committee, 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$21,083
EDUCATION and PATIENT POWERED SUPPORT AND RESEARCH ... MLDfoundation.org 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. (700+ 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$18,560
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/NICHD Newborn Screening meetings, continued planning for RUSP Roundtable meetings, continued support and advancement of MLD newborn screening pilot study, defined and sought funding for RANSIP RUSP approval 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, and newborn screening for rare diseases. Host numerous websites to inform, educate, influence, and support MLD families and research.$0$15,202
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Christine HoffmannDirector-$0--
Marc Patterson MDDirector-$0--
Wilson SmithDirector-$0--
Teryn SuhrExecutive DirectorPT$0--
Dean SuhrPresidentPT$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
2024-11-15
Supplemental Narrative

Additional Explanations

Form 990-EZ, Part I, Line 16

Description;Amount^Program and Operations;141966|Charity donations;140^Total;142106^

Form 990-EZ, Part I, Line 20

Adjustment

Raw XML Appendix250 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.

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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.
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IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt0COMPASSSION and EDUCATION ... Hosted annual MLD Family Conference(R) in Knoxville, TN 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 GatheringsTM 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/NICHD Newborn Screening meetings, continued planning for RUSP Roundtable meetings, continued support and advancement of MLD newborn screening pilot study, defined and sought funding for RANSIP RUSP approval 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, and newborn screening for rare diseases. Host numerous websites to inform, educate, influence, and support MLD families and research.
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 preparation of a RUSP nomination for the federal ACHDNC HRSA/HHS committee, 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 ... MLDfoundation.org 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. (700+ 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/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/TotalAmt00
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.66460
IRS990ScheduleA/PublicSupportPY509Pct00.68924
IRS990ScheduleA/PublicSupportTotal509Amt0412385
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt020000
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt026914
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt065000
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt086175
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt010000
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt0208089
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt020000
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt026914
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt065000
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt086175
IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt0198089
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/TotalAmt00
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind0X
IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt0141705
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt078235
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt0116690
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0135863
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0147981
IRS990ScheduleA/Total509Grp/TotalAmt0620474
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt0141706
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt078237
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt0116692
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0135871
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0147991
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt0620497
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^Program and Operations;141966|Charity donations;140^Total;142106^
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1Adjustment
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990-EZ, Part I, Line 16
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990-EZ, Part I, Line 20
ReasonableCauseExplanation/ExplanationTxt0Form 8868, Request for Extension was filed and approved before the May 15th deadline.
ReturnHeader/BuildTS02024-10-15 13:58:12Z
ReturnHeader/BusinessOfficerGrp/PersonNm0Dean Suhr
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0President
ReturnHeader/BusinessOfficerGrp/PhoneNum05036564808
ReturnHeader/BusinessOfficerGrp/SignatureDt02024-11-15
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/ReturnTs02024-11-15T22:21:11-07:00
ReturnHeader/ReturnTypeCd0990EZ
ReturnHeader/TaxPeriodBeginDt02023-01-01
ReturnHeader/TaxPeriodEndDt02023-12-31
ReturnHeader/TaxYr02023

Document Assets

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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
2023Detailed filing. Detailed filing data is available for this year.$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