Civic Intelligence

MLD Foundation

990EZ • Fiscal year 2012 • EIN 93-1320953

Jan 01, 2012 to Dec 31, 2012 • Filed on May 19, 2013

Organization ProfileMLDfoundation.org
21345 Miles Drive97068
Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

80th percentile

0.18x

Higher debt load relative to assets than 80% of similar nonprofits.

2012 filings • 501(c)3 • <$500k nonprofits • Source year 2012

Liabilities / Revenue

85th percentile

0.18x

Higher debt load relative to revenue than 85% of similar nonprofits.

2012 filings • 501(c)3 • <$500k nonprofits • Source year 2012

Net Margin

41st percentile

-0.4%

Higher net margin than 41% of similar nonprofits.

2012 filings • 501(c)3 • <$500k nonprofits • Source year 2012

Top Officer Pay

Score unavailable

No value available

This filing does not contain officer compensation rows.

Source year 2012

Asset Growth

77th percentile

26%

Faster asset growth than 77% of similar nonprofits.

2012 filings • 501(c)3 • <$500k nonprofits • Annualized from 2011 to 2012

Revenue Growth

17th percentile

-29%

Faster revenue growth than 17% of similar nonprofits.

2012 filings • 501(c)3 • <$500k nonprofits • Annualized from 2011 to 2012

Balance Sheet
Liabilities / Assets80th percentile

Assets

Up

$65,832

Up $13,465 (+26%) from 2011

Net Assets

Up

$54,033

Up $1,992 (+3.8%) from 2011

Liabilities

Up

$11,799

Up $11,473 (+3519%) from 2011

Revenue And Expenses
Liabilities / Revenue85th percentileNet Margin41st percentile

Revenue

Down

$66,542

Down $27,698 (-29%) from 2011

Expenses

Down

$66,780

Down $27,433 (-29%) from 2011

Net Income

Down

-$238

Down $265 (-981%) from 2011

Historical Trend

Balance Sheet Trend

Asset Growth77th percentile

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

2012

Assets$65,832
Liabilities$11,799
Net Assets$54,033
Open 2012 Filing

Operations Trend

Revenue Growth17th percentile

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

2012

Revenue$66,542
Expenses$66,780
Net Income-$238
Open 2012 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2012 to Dec 31, 2012
Signed
May 19, 2013
Return Version
2012v2.0
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.

Filing and Contact Details

Filer

EIN
93-1320953
Raw XML Appendix308 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/OfficerDirectorTrusteeKeyEmpl/PersonName1Lawrence Charnas MD
IRS990EZ/OfficerDirectorTrusteeKeyEmpl/PersonName2Rob Teach
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IRS990EZ/PrimaryExemptPurpose0We 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/ProgramServiceAccomplishment/DescriptionProgramServiceAccom0COMPASSSION & EDUCATION ... Organized and hosted MLD Family Conference(tm) in Charlotte, North Carolina. 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 conference videos freely posted on the MLD Foundation website)
IRS990EZ/ProgramServiceAccomplishment/DescriptionProgramServiceAccom1INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the Brains for Brain Research Conference (Frankfurt), NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, visited the FDA, NIH, NINDS, World RARE Disease Day events in DC, NICHD Newborn Screening meeting, NINDS non-Profit Forum, and visited researchers at their home facilities representing the interests of MLD researchers and families. Met with dozens of researchers and medical professionals from across the globe to understand and influence how they treat MLD and other leukodystrophies & lysosomal diseases. Discussed newborn screening, rare disease registries, accelerating rare disease research, HGT-1111 and other clinical trials & compassionate/named access, and several specific MLD research efforts.
IRS990EZ/ProgramServiceAccomplishment/DescriptionProgramServiceAccom2RESEARCH ... participated in international Brains for Brain Research Consortium's meeting to follow up on $40,000 of prior grants for the MLD-core consisting of eight tightly collaborative projects ... 4 basic science, 1 natural history, and three therapies including one clinical trial (Milano - Gene Therapy). Funded the establishment of a MLD knockout mouse colony in the US for local research. Funded Stem Cell research at University of Minnesota.
IRS990EZ/ProgramServiceAccomplishment/DescriptionProgramServiceAccom3COMPASSSION ... Met with families and small family groups where a MLD Family Conference is not possible. These visits and MLD Family Gatherings(tm) bring families in a geography together to meet each other - often for the very first time. We share research and clinical trial updates, answer questions, and allocate the bulk of the time to building relationships between the families. We visit MLD affected families to educate and further connect those families with the MLD Foundation and other families. (approx 20 families). Worked with leaders in the UK to consider establishing a branch of the MLD Foundation in the UK.
IRS990EZ/ProgramServiceAccomplishment/DescriptionProgramServiceAccom4COMPASSION, INFLUENCE RESEARCH, EDUCATION ... The Family Discussion List and MLD Family Profile Registry. The MLD Family Discussion List is the worlds 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. The MLD Family Profile Registry 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/ProgramServiceAccomplishment/DescriptionProgramServiceAccom5AWARENESS & 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-FDASIA meeting testimony and new drug advisory committee testimony, SACHDNC (newborn screening) testimony. Focus on implementation of electronic medical records, orphan disease research, registries, and newborn screening for rare diseases. (485 Senators & Representatives on behalf of hundreds of families). Add on to other conference and awareness activities so no direct lobbying costs. NIH non-profit summit panelist and planner, Organized and hosted Patient Advocacy Summit for approx. 200 advocates.
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IRS990ScheduleG/EventsInformation/RentFacilityCostsTotalEvents01200
IRS990ScheduleG/EventsInformation/TotalNumberOfOtherEvents00
IRS990ScheduleO/GeneralExplanation/Explanation0Minnesota medical Foundation for stem cell research
IRS990ScheduleO/GeneralExplanation/Explanation1Description;Amount^Awareness;4460|Compassion - conference;25362|Compassion - other;3156|Bank charges - donations;860|Education;687|Operations;2180|Research expenses;17498^Total;54203^
IRS990ScheduleO/GeneralExplanation/Explanation2Description;Amount^adjustment in fund raising assets;2230^Total;2230^
IRS990ScheduleO/GeneralExplanation/Explanation3Merchandise for fund raising
IRS990ScheduleO/GeneralExplanation/Explanation4Description;EOY Amount^Minnesota Medical Foundation;10000|First American Traders;1799^Total;11799^
IRS990ScheduleO/GeneralExplanation/Identifier0F99Z_P01_S00_L10
IRS990ScheduleO/GeneralExplanation/Identifier1F99Z_P01_S00_L16
IRS990ScheduleO/GeneralExplanation/Identifier2F99Z_P01_S00_L20
IRS990ScheduleO/GeneralExplanation/Identifier3F99Z_P02_S00_L24
IRS990ScheduleO/GeneralExplanation/Identifier4F99Z_P02_S00_L26
IRS990ScheduleO/GeneralExplanation/ReturnReference0Form 990-EZ, Part I, Line 10
IRS990ScheduleO/GeneralExplanation/ReturnReference1Form 990-EZ, Part I, Line 16
IRS990ScheduleO/GeneralExplanation/ReturnReference2Form 990-EZ, Part I, Line 20
IRS990ScheduleO/GeneralExplanation/ReturnReference3Form 990-EZ, Part II, Line 24
IRS990ScheduleO/GeneralExplanation/ReturnReference4Form 990-EZ, Part II, Line 26
ReturnHeader/BuildTS02016-02-24 21:20:13Z
ReturnHeader/Filer/EIN0931320953
ReturnHeader/Filer/Name/BusinessNameLine10MLD FOUNDATION
ReturnHeader/Filer/NameControl0MLDF
ReturnHeader/Filer/Phone05036564808
ReturnHeader/Filer/USAddress/AddressLine1021345 Miles Drive
ReturnHeader/Filer/USAddress/City0West Linn
ReturnHeader/Filer/USAddress/State0OR
ReturnHeader/Filer/USAddress/ZIPCode097068
ReturnHeader/Officer/DateSigned02013-05-19
ReturnHeader/Officer/Name0Dean Suhr
ReturnHeader/Officer/Phone05036564808
ReturnHeader/Officer/Title0President
ReturnHeader/ReturnType0990EZ
ReturnHeader/TaxPeriodBeginDate02012-01-01
ReturnHeader/TaxPeriodEndDate02012-12-31
ReturnHeader/TaxYear02012
ReturnHeader/Timestamp02013-05-20T12:47:39-07:00

Document Assets

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Filings

Displayed year

2012 • Form 990EZFacts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$65,832
Liabilities
$11,799
Net assets
$54,033
Revenue
$66,542
Expenses
$66,780
Net income
-$238
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
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$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