Civic Intelligence

MLD Foundation

990EZ • Fiscal year 2019 • EIN 93-1320953

Jan 01, 2019 to Dec 31, 2019 • Filed on Nov 14, 2020

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

70th percentile

0.04x

Higher debt load relative to assets than 70% of similar nonprofits.

2019 filings • 501(c)3 • <$500k nonprofits • Source year 2019

Liabilities / Revenue

61st percentile

0.01x

Higher debt load relative to revenue than 61% of similar nonprofits.

2019 filings • 501(c)3 • <$500k nonprofits • Source year 2019

Net Margin

42nd percentile

0.2%

Higher net margin than 42% of similar nonprofits.

2019 filings • 501(c)3 • <$500k nonprofits • Source year 2019

Top Officer Pay

Score unavailable

No value available

This filing does not contain officer compensation rows.

Source year 2019

Asset Growth

52nd percentile

3.3%

Faster asset growth than 52% of similar nonprofits.

2019 filings • 501(c)3 • <$500k nonprofits • Annualized from 2018 to 2019

Revenue Growth

77th percentile

27%

Faster revenue growth than 77% of similar nonprofits.

2019 filings • 501(c)3 • <$500k nonprofits • Annualized from 2018 to 2019

Assets

Up

$26,854

Up $868 (+3.3%) from 2018

Net Assets

Down

$25,838

Down $148 (-0.6%) from 2018

Liabilities

Up

$1,016

Up $1,016 from 2018

Revenue

Up

$160,222

Up $33,669 (+27%) from 2018

Expenses

Up

$159,938

Up $33,646 (+27%) from 2018

Net Income

Up

$284

Up $23 (+8.8%) from 2018

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

2019

Assets$26,854
Liabilities$1,016
Net Assets$25,838

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

2019

Revenue$160,222
Expenses$159,938
Net Income$284
Jump To
Filing Snapshot
Filing Period
Jan 1, 2019 to Dec 31, 2019
Signed
Nov 14, 2020
Return Version
2019v5.0
Gross Receipts
$160,222
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 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."(tm) reflects our mission of Compassion, Awareness, Research, and Education. Today there are no 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 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 & EDUCATION ... Organized and hosted MLD Family Conference(tm) in Franklin, TN with 99 people in attendance including 24 families plus dozens of livestream remote attendees. Brought together families, researchers, doctors, service providers, and other resources for two days of meetings with the common goal of providing insight to improving the quality of life for those with MLD and their caregivers. We share research and clinical trial updates, answer questions, and allocate the bulk of the time to facilitating the building relationships between the families. (24 families in attendance - hundreds more when they view the live webcast and conference videos freely posted on the MLD Foundation website). Visited numerous other families in their hometowns during our other travels.$26,981$49,339
PATIENT POWERED SUPPORT AND RESEARCH ... The MLD Family Discussion List and the MLD Family 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. Supported MLD Patient Powered Registry (tm), our Genetic Alliance/PCORI-funded patient-powered research network driven MLD Family registry which captures family demographic information and is quickly becoming the largest international database of MLD family histories. This data will be 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, one of which (gene therapy) filed for EMA review in late 2019.$29,167$24,716
INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, RDCRN/GLIA-LCN meeting, visited the FDA, NIH, NINDS, World RARE Disease Day events in DC, HHS/NICHD Newborn Screening meetings, organized two RUSP Roundtable meetings (newborn screening policy and technology), continued MLD newborn screening pilot study, defined and sought funding for RANSIP RUSP approval and broad NBS implementation program, started development relationships with two new biotech/pharma companies, terminated a development program with one existing partner, 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$26,391
COMPASSION ... MLD Family Compassion Fund(tm) and Compassion grants support many families. Meet with 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. Direct family financial support through our independently managed MLD Family Compassion Fund.$3,361$1,802
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Christine HoffmannDirectorPT$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
2020-11-14
Supplemental Narrative

Additional Explanations

Form 990-EZ, Part I, Line 10

115,116 MLD Family and other Conferences 26,176 Other Program expenses

Form 990-EZ, Part I, Line 16

Description;Amount^Bank processing charges;1029|Dues and Subscriptions;589|Fund raising expenses;5290|Government fees;275|Office expenses software computers;8369^Total;15552^

Form 990-EZ, Part I, Line 20

accounting and currency exchange adjustments for foreign donations

Form 990-EZ, Part II, Line 26

payables

Raw XML Appendix259 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 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."(tm) reflects our mission of Compassion, Awareness, Research, and Education. Today there are no 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 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/DescriptionProgramSrvcAccomTxt1INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, RDCRN/GLIA-LCN meeting, visited the FDA, NIH, NINDS, World RARE Disease Day events in DC, HHS/NICHD Newborn Screening meetings, organized two RUSP Roundtable meetings (newborn screening policy and technology), continued MLD newborn screening pilot study, defined and sought funding for RANSIP RUSP approval and broad NBS implementation program, started development relationships with two new biotech/pharma companies, terminated a development program with one existing partner, 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/DescriptionProgramSrvcAccomTxt2COMPASSION ... MLD Family Compassion Fund(tm) and Compassion grants support many families. Meet with 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. Direct family financial support through our independently managed MLD Family Compassion Fund.
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt3PATIENT POWERED SUPPORT AND RESEARCH ... The MLD Family Discussion List and the MLD Family 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. Supported MLD Patient Powered Registry (tm), our Genetic Alliance/PCORI-funded patient-powered research network driven MLD Family registry which captures family demographic information and is quickly becoming the largest international database of MLD family histories. This data will be 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, one of which (gene therapy) filed for EMA review in late 2019.
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IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/TotalAmt00
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.95980
IRS990ScheduleA/PublicSupportPY509Pct00.97461
IRS990ScheduleA/PublicSupportTotal509Amt0651127
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt010000
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt010958
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt06214
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt030
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt027202
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus4YearsAmt030
IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt030
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/TotalAmt00
IRS990ScheduleA/ThirtyThrPctSuprtTestsPY509Ind0X
IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt0147981
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt0126549
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt093267
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0152548
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0157984
IRS990ScheduleA/Total509Grp/TotalAmt0678329
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt0147991
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt0126553
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt093280
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0152563
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0158014
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt0678401
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/ExplanationTxt0115,116 MLD Family and other Conferences 26,176 Other Program expenses
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1Description;Amount^Bank processing charges;1029|Dues and Subscriptions;589|Fund raising expenses;5290|Government fees;275|Office expenses software computers;8369^Total;15552^
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2accounting and currency exchange adjustments for foreign donations
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3payables
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990-EZ, Part I, Line 10
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990-EZ, Part I, Line 16
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2Form 990-EZ, Part I, Line 20
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3Form 990-EZ, Part II, Line 26
ReasonableCauseExplanation/ExplanationTxt0We thought we filed form 8868, making this return due on 11/15, but we cannot find proof of such filing.
ReturnHeader/BuildTS02021-04-22 16:20:28Z
ReturnHeader/BusinessOfficerGrp/PersonNm0Dean Suhr
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0President
ReturnHeader/BusinessOfficerGrp/PhoneNum05036564808
ReturnHeader/BusinessOfficerGrp/SignatureDt02020-11-14
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/FilingSecurityInformation/IPAddress/IPv4AddressTxt071.63.132.21
ReturnHeader/ReturnTs02020-11-13T22:09:22-07:00
ReturnHeader/ReturnTypeCd0990EZ
ReturnHeader/TaxPeriodBeginDt02019-01-01
ReturnHeader/TaxPeriodEndDt02019-12-31
ReturnHeader/TaxYr02019

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
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
2019Detailed filing. Detailed filing data is available for this year.$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