Liabilities / Assets
59th percentile
Higher debt load relative to assets than 59% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
59th percentile
Higher debt load relative to assets than 59% of similar nonprofits.
Liabilities / Revenue
57th percentile
Higher debt load relative to revenue than 57% of similar nonprofits.
Net Margin
12th percentile
Higher net margin than 12% 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
8th percentile
Faster asset growth than 8% of similar nonprofits.
Revenue Growth
14th percentile
Faster revenue growth than 14% of similar nonprofits.
Assets
Down$25,813
Down $30,884 (-54%) from 2016
Net Assets
Down$25,724
Down $25,874 (-50%) from 2016
Liabilities
Down$89
Down $5,010 (-98%) from 2016
Revenue
Down$92,063
Down $48,500 (-35%) from 2016
Expenses
Down$117,937
Down $56,615 (-32%) from 2016
Net Income
Up-$25,874
Up $8,115 (+24%) from 2016
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.
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.
| Description | Grants | Expenses |
|---|---|---|
| COMPASSSION & EDUCATION ... Organized and hosted MLD Family Conference(tm) in Plymouth Meeting, PA with 76 people in attendance. Brought together families, researchers, doctors, service providers and other resources for two-day 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. (approx 30 families directly affected - 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. | $24,750 | $53,820 |
| INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, facilitated and attended GLIA 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, transferred a set of mice from the US MLD mouse colony that we established to a new biotech firm, 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. | $0 | $28,792 |
| COMPASSION ... MLD Family Compassion Fund(tm) and Compassion grants support many families. Meet with families and small family groups where a MLD Family Conference is not possible. These visits and Third Program Service Accomplishments Description MLD Family Gatherings(tm) bring families in a 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 | $15,354 |
| COMPASSION & RESEARCH - PATIENT POWERED SUPPORT AND RESEARCH ... The MLD Family Discussion List is 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. Partnered with Genetic Alliance on a PCORI funded patient powered research network which will result in a next generation registry launch to supplement the MLD Family Profile 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) | $0 | $1,549 |
| 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 | $881 |
| Rare Honor/Gifting With Purpose ... licensed patent and supporting implementation of fund raising platform for MLD Foundation. Have rights to make available to all 501c3s with a royalty stream to MLD Foundation. | $0 | $284 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Christine Hoffmann | Director | - | $0 | - | - |
| Rob Teach | Director | - | $0 | - | - |
| Marc Patterson MD | Director | - | $0 | - | - |
| Wilson Smith | Director | - | $0 | - | - |
| Teryn Suhr | Executive Director | PT | $0 | - | - |
| Dean Suhr | President | FT | $0 | - | - |
“Description;Amount^Awareness;3342|Bank fees;694|Family Conference Expenses;53797|Conferences research policy awareness;26364|Education;881|Government fees;256|Research;10941^Total;96275^”
“Current liabilities”
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/GrossReceiptsAmt | 0 | 92063 |
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| IRS990EZ/MadeLoansToFromOfficersInd | 0 | 0 |
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| IRS990EZ/NetAssetsOrFundBalancesEOYAmt | 0 | 25724 |
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| IRS990EZ/OccupancyRentUtltsAndMaintAmt | 0 | 7095 |
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| IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt | 5 | 35 |
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| IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt | 5 | President |
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| IRS990EZ/PartVIOfCompOfHghstPdEmplTxt | 0 | NONE |
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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 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. |
| IRS990EZ/PrintingPublicationsPostageAmt | 0 | 500 |
| IRS990EZ/ProgramServiceRevenueAmt | 0 | 0 |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 0 | COMPASSSION & EDUCATION ... Organized and hosted MLD Family Conference(tm) in Plymouth Meeting, PA with 76 people in attendance. Brought together families, researchers, doctors, service providers and other resources for two-day 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. (approx 30 families directly affected - 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, facilitated and attended GLIA 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, transferred a set of mice from the US MLD mouse colony that we established to a new biotech firm, 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. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 2 | COMPASSION ... MLD Family Compassion Fund(tm) and Compassion grants support many families. Meet with families and small family groups where a MLD Family Conference is not possible. These visits and Third Program Service Accomplishments Description MLD Family Gatherings(tm) bring families in a 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 | COMPASSION & RESEARCH - PATIENT POWERED SUPPORT AND RESEARCH ... The MLD Family Discussion List is 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. Partnered with Genetic Alliance on a PCORI funded patient powered research network which will result in a next generation registry launch to supplement the MLD Family Profile 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) |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 4 | 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 | 5 | Rare Honor/Gifting With Purpose ... licensed patent and supporting implementation of fund raising platform for MLD Foundation. Have rights to make available to all 501c3s with a royalty stream to MLD Foundation. |
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| IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt | 4 | 881 |
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| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt | 0 | 97 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0.00014 |
| IRS990ScheduleA/InvestmentIncomePYPct | 0 | 0.00018 |
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| IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus4YearsAmt | 0 | 0 |
| IRS990ScheduleA/Post1975UBTIGrp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0.97428 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.99031 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 654037 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt | 0 | 10958 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt | 0 | 6214 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 17172 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt | 0 | 10958 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt | 0 | 6214 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus4YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt | 0 | 17172 |
| 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 | 93267 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 152548 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 157206 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 150948 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 117240 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 671209 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 93280 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 152563 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 157236 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 150966 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 117261 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 671306 |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | Description;Amount^Awareness;3342|Bank fees;694|Family Conference Expenses;53797|Conferences research policy awareness;26364|Education;881|Government fees;256|Research;10941^Total;96275^ |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | Current liabilities |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990-EZ, Part I, Line 16 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990-EZ, Part II, Line 26 |
| ReturnHeader/BuildTS | 0 | 2019-02-21 02:37:17Z |
| ReturnHeader/BusinessOfficerGrp/PersonNm | 0 | Dean Suhr |
| ReturnHeader/BusinessOfficerGrp/PersonTitleTxt | 0 | President |
| ReturnHeader/BusinessOfficerGrp/PhoneNum | 0 | 5036564808 |
| ReturnHeader/BusinessOfficerGrp/SignatureDt | 0 | 2018-11-14 |
| 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 | 50.78.184.54 |
| ReturnHeader/ReturnTs | 0 | 2018-11-14T18:54:10-07:00 |
| ReturnHeader/ReturnTypeCd | 0 | 990EZ |
| ReturnHeader/TaxPeriodBeginDt | 0 | 2017-01-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2017-12-31 |
| ReturnHeader/TaxYr | 0 | 2017 |
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Displayed year
2017 • Form 990EZDetailed filing. Detailed filing data is available for this year.