Liabilities / Assets
55th percentile
Tied with the lowest-debt nonprofits in its peer group.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
55th percentile
Tied with the lowest-debt nonprofits in its peer group.
Liabilities / Revenue
55th percentile
Tied with the lowest-debt nonprofits in its peer group.
Net Margin
76th percentile
Higher net margin than 76% of similar nonprofits.
Top Officer Pay
76th percentile
Higher top officer pay than 76% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
90th percentile
Faster asset growth than 90% of similar nonprofits.
Revenue Growth
49th percentile
Faster revenue growth than 49% of similar nonprofits.
Assets
Up$60,909
Up $34,055 (+127%) from 2019
Net Assets
Up$60,909
Up $35,071 (+136%) from 2019
Liabilities
Down$0
Down $1,016 (-100%) from 2019
Revenue
Down$135,871
Down $24,351 (-15%) from 2019
Expenses
Down$99,747
Down $60,191 (-38%) from 2019
Net Income
Up$36,124
Up $35,840 (+12620%) from 2019
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."(tm) 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 |
|---|---|---|
| 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, 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 | $36,372 |
| 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, the generation of a RUSP application for the federal ACHDNC HRSA/HHS committee, and to generate flows for the referrals of babies diagnosed with MLD. These materials will be sed ro state by state NBS implementation in the US and abroad. Similar efforts are being organized for diagnostic confirmation at later ages. | $0 | $28,827 |
| COMPASSSION and EDUCATION ... COVID forced a pivot and a deferral of our annual MLD Family ConferenceTM. Continued online, telephone, and in person family visits in their hometowns during. Hosted men's, women's, and couple's virtual gatherings every 4-6 weeks. 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. | $0 | $16,647 |
| 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. 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. | $0 | $14,379 |
| 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^Bank Charges including credit card processing fees;1191|MLD Family Conference expenses;19983|Other conference expenses;10535|Dues and Subscriptions;544|Government fees;750|Direct Compassion;1537|Awareness net;-8703|Research;12977|Education;84|rounding adjustment;-2^Total;38896^”
“Currency exchange and other adjustments -1,053”
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/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."(tm) 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/DescriptionProgramSrvcAccomTxt | 0 | COMPASSSION and EDUCATION ... COVID forced a pivot and a deferral of our annual MLD Family ConferenceTM. Continued online, telephone, and in person family visits in their hometowns during. Hosted men's, women's, and couple's virtual gatherings every 4-6 weeks. 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/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/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/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, the generation of a RUSP application for the federal ACHDNC HRSA/HHS committee, and to generate flows for the referrals of babies diagnosed with MLD. These materials will be sed ro 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 ... 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. 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. |
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| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt | 0 | 10958 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt | 0 | 6214 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 113347 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt | 0 | 86175 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus4YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt | 0 | 86175 |
| 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 | 135863 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 147981 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 126549 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 93267 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 152548 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 656208 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 135871 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 147991 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 126553 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 93280 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 152563 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 656258 |
| 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^Bank Charges including credit card processing fees;1191|MLD Family Conference expenses;19983|Other conference expenses;10535|Dues and Subscriptions;544|Government fees;750|Direct Compassion;1537|Awareness net;-8703|Research;12977|Education;84|rounding adjustment;-2^Total;38896^ |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | Currency exchange and other adjustments -1,053 |
| 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 | Extension filed |
| ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/AuthenticationAssuranceLevelCd | 0 | AAL2 |
| ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/LastSubmissionRqrOOBCd | 0 | 0 |
| ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/OOBSecurityVerificationCd | 0 | 11 |
| ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/TrustedCustomerCd | 0 | 1 |
| ReturnHeader/BuildTS | 0 | 2022-09-23 18:48:47Z |
| ReturnHeader/BusinessOfficerGrp/PersonNm | 0 | Dean Suhr |
| ReturnHeader/BusinessOfficerGrp/PersonTitleTxt | 0 | President |
| ReturnHeader/BusinessOfficerGrp/PhoneNum | 0 | 5036564808 |
| ReturnHeader/BusinessOfficerGrp/SignatureDt | 0 | 2021-11-15 |
| 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/ReturnTs | 0 | 2021-11-15T12:50:02-07:00 |
| ReturnHeader/ReturnTypeCd | 0 | 990EZ |
| ReturnHeader/TaxPeriodBeginDt | 0 | 2020-01-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2020-12-31 |
| ReturnHeader/TaxYr | 0 | 2020 |
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Displayed year
2020 • Form 990EZDetailed filing. Detailed filing data is available for this year.