Liabilities / Assets
70th percentile
Higher debt load relative to assets than 70% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
70th percentile
Higher debt load relative to assets than 70% of similar nonprofits.
Liabilities / Revenue
61st percentile
Higher debt load relative to revenue than 61% of similar nonprofits.
Net Margin
42nd percentile
Higher net margin than 42% of similar nonprofits.
Top Officer Pay
Score unavailable
This filing does not contain officer compensation rows.
Asset Growth
52nd percentile
Faster asset growth than 52% of similar nonprofits.
Revenue Growth
77th percentile
Faster revenue growth than 77% of similar nonprofits.
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
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.
| Description | Grants | Expenses |
|---|---|---|
| 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 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Christine Hoffmann | Director | PT | $0 | - | - |
| Marc Patterson MD | Director | - | $0 | - | - |
| Wilson Smith | Director | - | $0 | - | - |
| Teryn Suhr | Executive Director | PT | $0 | - | - |
| Dean Suhr | President | FT | $0 | - | - |
“115,116 MLD Family and other Conferences 26,176 Other Program expenses”
“Description;Amount^Bank processing charges;1029|Dues and Subscriptions;589|Fund raising expenses;5290|Government fees;275|Office expenses software computers;8369^Total;15552^”
“accounting and currency exchange adjustments for foreign donations”
“payables”
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 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/DescriptionProgramSrvcAccomTxt | 0 | 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. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 1 | 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. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 2 | 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. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 3 | 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. |
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| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 27202 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus4YearsAmt | 0 | 30 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt | 0 | 30 |
| 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/ThirtyThrPctSuprtTestsPY509Ind | 0 | X |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt | 0 | 147981 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 126549 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 93267 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 152548 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 157984 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 678329 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 147991 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 126553 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 93280 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 152563 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 158014 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 678401 |
| 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 | 115,116 MLD Family and other Conferences 26,176 Other Program expenses |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | Description;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/ExplanationTxt | 2 | accounting and currency exchange adjustments for foreign donations |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | payables |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990-EZ, Part I, Line 10 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990-EZ, Part I, Line 16 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Form 990-EZ, Part I, Line 20 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Form 990-EZ, Part II, Line 26 |
| ReasonableCauseExplanation/ExplanationTxt | 0 | We thought we filed form 8868, making this return due on 11/15, but we cannot find proof of such filing. |
| ReturnHeader/BuildTS | 0 | 2021-04-22 16:20:28Z |
| ReturnHeader/BusinessOfficerGrp/PersonNm | 0 | Dean Suhr |
| ReturnHeader/BusinessOfficerGrp/PersonTitleTxt | 0 | President |
| ReturnHeader/BusinessOfficerGrp/PhoneNum | 0 | 5036564808 |
| ReturnHeader/BusinessOfficerGrp/SignatureDt | 0 | 2020-11-14 |
| 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/FilingSecurityInformation/IPAddress/IPv4AddressTxt | 0 | 71.63.132.21 |
| ReturnHeader/ReturnTs | 0 | 2020-11-13T22:09:22-07:00 |
| ReturnHeader/ReturnTypeCd | 0 | 990EZ |
| ReturnHeader/TaxPeriodBeginDt | 0 | 2019-01-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2019-12-31 |
| ReturnHeader/TaxYr | 0 | 2019 |
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Displayed year
2019 • Form 990EZDetailed filing. Detailed filing data is available for this year.