Liabilities / Assets
69th percentile
Higher debt load relative to assets than 69% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
69th percentile
Higher debt load relative to assets than 69% of similar nonprofits.
Liabilities / Revenue
69th percentile
Higher debt load relative to revenue than 69% of similar nonprofits.
Net Margin
55th percentile
Higher net margin than 55% of similar nonprofits.
Top Officer Pay
Score unavailable
This filing does not contain officer compensation rows.
Asset Growth
69th percentile
Faster asset growth than 69% of similar nonprofits.
Revenue Growth
44th percentile
Faster revenue growth than 44% of similar nonprofits.
Assets
Up$94,275
Up $12,859 (+16%) from 2014
Net Assets
Up$90,298
Up $10,683 (+13%) from 2014
Liabilities
Up$3,977
Up $2,176 (+121%) from 2014
Revenue
Down$157,237
Down $3,473 (-2.2%) from 2014
Expenses
Down$148,929
Down $11,433 (-7.1%) from 2014
Net Income
Up$8,308
Up $7,960 (+2287%) from 2014
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.
We work with families, researchers, regulators, industry, and policy makers to improve the quality of life for those with MLD, develop and improve therapies for MLD, and we 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. The MLD Foundation was formed in May 2001.
| Description | Grants | Expenses |
|---|---|---|
| COMPASSSION & EDUCATION ... Organized and hosted MLD Family Conference(tm) in Newark, DE with 99 people in attendance. Brought together families, researchers, doctors, service providers and otherresources 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) | $0 | $47,687 |
| INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, facilitated GLIA meeting, visited the FDA, NIH, NINDS, World RARE Disease Day events in DC, NICHD Newborn Screening meetings, organized RUSP Roundtable (for newborn screening policy), supported MLD newborn screening assay development, attended and exhibited at Child Neurology Society annual meeting, and visited researchers at their home facilities representing the interests of MLD families and other researchers. Supported global clinical trial recruiting. | $0 | $28,131 |
| 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 MLDFamily 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. | $0 | $18,371 |
| WARENESS & 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, SACHDNC (newborn screening) testimony. Focus on implementation of electronic medical records, orphan disease research, registries, and newborn screening for rare diseases. NIH NINDS Non-Profit Forum planning committee. Host numerous websites to inform, educate, influence, and support MLD families and research. | $0 | $10,618 |
| 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 | $2,598 |
| 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 in 2016 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. (400+ families) | $0 | $1,741 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Christine Hoffmann | Director | - | $0 | - | - |
| Lawrence Charnas MD | Director | - | $0 | - | - |
| Rob Teach | Director | - | $0 | - | - |
| Wilson Smith | Director | - | $0 | - | - |
| Teryn Suhr | Executive Director | PT | $0 | - | - |
| Dean Suhr | President | FT | $0 | - | - |
“Description;Amount^Awareness;8053|Bank fees PayPal;1093|Charity;5|Family Conference Expenses;47681|Family Gatherings and Other Conferences;28917|Education;2565|Fund Raising Expenses;1765|Government Fees;1003|Research;30452^Total;121534^”
“Description;Amount^general ledger adjustment;2375^Total;2375^”
“Description;EOY Amount^Accounts receivable;6200^Total;6200^”
“Description;EOY Amount^Accounts Payable;3977^Total;3977^”
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 | We work with families, researchers, regulators, industry, and policy makers to improve the quality of life for those with MLD, develop and improve therapies for MLD, and we 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. The MLD Foundation was formed in May 2001. |
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| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 0 | COMPASSSION & EDUCATION ... Organized and hosted MLD Family Conference(tm) in Newark, DE with 99 people in attendance. Brought together families, researchers, doctors, service providers and otherresources 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) |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 1 | INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, facilitated GLIA meeting, visited the FDA, NIH, NINDS, World RARE Disease Day events in DC, NICHD Newborn Screening meetings, organized RUSP Roundtable (for newborn screening policy), supported MLD newborn screening assay development, attended and exhibited at Child Neurology Society annual meeting, and visited researchers at their home facilities representing the interests of MLD families and other researchers. Supported global clinical trial recruiting. |
| 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 MLDFamily 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. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 3 | 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 in 2016 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. (400+ families) |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 4 | WARENESS & 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, SACHDNC (newborn screening) testimony. Focus on implementation of electronic medical records, orphan disease research, registries, and newborn screening for rare diseases. NIH NINDS Non-Profit Forum planning committee. Host numerous websites to inform, educate, influence, and support MLD families and research. |
| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 5 | 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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| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.9179 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 561219 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt | 0 | 20000 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt | 0 | 10000 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 30000 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt | 0 | 20000 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt | 0 | 10000 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus4YearsAmt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt | 0 | 30000 |
| 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 | 157206 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 150948 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 117240 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 75354 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 90471 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 591219 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 157236 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 150966 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 117261 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 75388 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 90537 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 591388 |
| 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^Awareness;8053|Bank fees PayPal;1093|Charity;5|Family Conference Expenses;47681|Family Gatherings and Other Conferences;28917|Education;2565|Fund Raising Expenses;1765|Government Fees;1003|Research;30452^Total;121534^ |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | Description;Amount^general ledger adjustment;2375^Total;2375^ |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | Description;EOY Amount^Accounts receivable;6200^Total;6200^ |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | Description;EOY Amount^Accounts Payable;3977^Total;3977^ |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990-EZ, Part I, Line 16 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990-EZ, Part I, Line 20 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Form 990-EZ, Part II, Line 24 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Form 990-EZ, Part II, Line 26 |
| ReturnHeader/BuildTS | 0 | 2016-09-27 15:27:22Z |
| ReturnHeader/BusinessOfficerGrp/PersonNm | 0 | Dean Suhr |
| ReturnHeader/BusinessOfficerGrp/PersonTitleTxt | 0 | President |
| ReturnHeader/BusinessOfficerGrp/PhoneNum | 0 | 5036564808 |
| ReturnHeader/BusinessOfficerGrp/SignatureDt | 0 | 2016-08-13 |
| 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 | 2016-08-13T03:23:19-07:00 |
| ReturnHeader/ReturnTypeCd | 0 | 990EZ |
| ReturnHeader/TaxPeriodBeginDt | 0 | 2015-01-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2015-12-31 |
| ReturnHeader/TaxYr | 0 | 2015 |
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Displayed year
2015 • Form 990EZDetailed filing. Detailed filing data is available for this year.