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Balance Sheet
Assets
$47,190
No earlier filing loaded for comparison.
Net Assets
$44,338
No earlier filing loaded for comparison.
Liabilities
$2,852
No earlier filing loaded for comparison.
Revenue And Expenses
Revenue
$80,367
No earlier filing loaded for comparison.
Expenses
$77,358
No earlier filing loaded for comparison.
Net Income
$3,009
No earlier filing loaded for comparison.
Historical Trend
Jump To
Filing Snapshot
- Filing Period
- Jan 1, 2010 to Dec 31, 2010
- Signed
- Jul 8, 2011
- Return Version
- 2010v3.2
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
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| IRS990EZ/PrimaryExemptPurpose | 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 research for a cure. Metachromatic leukodystrophy (MLD) is a rare genetic neurodegenerative 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/DescriptionProgramServiceAccom | 0 | COMPASSSION & EDUCATION ... Organized and hosted MLD Family Conferences(tm) in Tokyo, Japan and Cleveland, Ohio. 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 35 families directly affected - dozens more when they view the conference videos freely posted on the MLD Foundation website) |
| IRS990EZ/ProgramServiceAccomplishment/DescriptionProgramServiceAccom | 1 | INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the Brains for Brain Research Conference (Frankfurt), NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, Shire HGT's MPAC, visited the FDA, NIH, NINDS, Genetic Alliance Annual Meeting, 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/DescriptionProgramServiceAccom | 2 | Invested $15,000 of research grant funds in the International Brains for Brain Research Consortium's MLD-core consisting of eight tightly collaborative projects ... 4 basic science, 1 natural history, and three therapies including one clinical trial (Milano - Gene Therapy). Reviewed results of HGT-1111 clinical trial with leading experts and supported various other efforts to influence/leverage research ($2024) |
| IRS990EZ/ProgramServiceAccomplishment/DescriptionProgramServiceAccom | 3 | COMPASSSION ... Met with families in Munich, Switzerland, Glasgow Scotland, Birmingham England, Baltimore, Washington State, and Phoenix. 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) |
| IRS990EZ/ProgramServiceAccomplishment/DescriptionProgramServiceAccom | 4 | COMPASSION, 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. MLD Personal Pages are free blog sites provided to families to keep their friends and family, and other MLD families informed about their day to day struggles and joys. 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/DescriptionProgramServiceAccom | 5 | AWARENESS & EDUCATION ... Visited Capitol Hill on issues of importance to MLD affected families, researchers, and industry. Focus on implementation of electronic medical records, orphan disease research, and newborn screening for rare diseases. (485 Senators & Representatives on behalf of hundreds of families). |
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| IRS990ScheduleO/GeneralExplanation/Explanation | 0 | International Brains for Brain research consortium's MLD Research Core |
| IRS990ScheduleO/GeneralExplanation/Explanation | 1 | 5,070.76 Awareness expenses, 28,758.63 MLD Family Conference expenses, 5,908.22 MLD Family Gathering expenses, 12,048.72 Other conference expenses, 932.74 Metazyme clinical trial review, 1,091.32 Research-other expenses, 100.00 compassion gift, 55.00 miscellaneous expenses, 2,500 Computer depreciation expense, 246.14 Dues & education expenses, 340.28 fund raising expense, 120.46 government fees, 212.22 supplies, 741.10 Bank and PayPal service charges |
| IRS990ScheduleO/GeneralExplanation/Explanation | 2 | Accounting of depreciation of 8 years worth of computer assets - none of which are in service anymore. |
| IRS990ScheduleO/GeneralExplanation/Explanation | 3 | 1,676 Software, 1189.11 computers, 2281.12 inventory |
| IRS990ScheduleO/GeneralExplanation/Explanation | 4 | 2851.94 Accounts payable - outstanding expense report |
| IRS990ScheduleO/GeneralExplanation/Identifier | 0 | F99Z_P01_S00_L10 |
| IRS990ScheduleO/GeneralExplanation/Identifier | 1 | F99Z_P01_S00_L16 |
| IRS990ScheduleO/GeneralExplanation/Identifier | 2 | F99Z_P01_S00_L20 |
| IRS990ScheduleO/GeneralExplanation/Identifier | 3 | F99Z_P02_S00_L24 |
| IRS990ScheduleO/GeneralExplanation/Identifier | 4 | F99Z_P02_S00_L26 |
| IRS990ScheduleO/GeneralExplanation/ReturnReference | 0 | Form 990-EZ, Part I, Line 10 |
| IRS990ScheduleO/GeneralExplanation/ReturnReference | 1 | Form 990-EZ, Part I, Line 16 |
| IRS990ScheduleO/GeneralExplanation/ReturnReference | 2 | Form 990-EZ, Part I, Line 20 |
| IRS990ScheduleO/GeneralExplanation/ReturnReference | 3 | Form 990-EZ, Part II, Line 24 |
| IRS990ScheduleO/GeneralExplanation/ReturnReference | 4 | Form 990-EZ, Part II, Line 26 |
| ReasonableCauseExplanation/Explanation | 0 | Our filing service, Form 990Online.org did not release its final forms until May 11th which was too close to 6 weeks of extended travel (MLD Family Conferences, research & policy meetings in Bethesda/DC , researcher & industry meetings in Massachusetts, etc.) to complete the filing in a timely manner. We have no paid staff so when we travel we cannot do the books/taxes. We did not file fro an extension because we thought we could make the deadline but were unable to do so in an accurate manner. In addition, there was significant unexpected reconciliation of our QuickBooks to hundreds of PayPal transactions in US dollars and Euros took significantly longer than expected. |
| ReturnHeader/BuildTS | 0 | 2016-02-24 21:20:13Z |
| ReturnHeader/Filer/EIN | 0 | 931320953 |
| ReturnHeader/Filer/Name/BusinessNameLine1 | 0 | MLD FOUNDATION |
| ReturnHeader/Filer/NameControl | 0 | MLDF |
| ReturnHeader/Filer/Phone | 0 | 5036564808 |
| ReturnHeader/Filer/USAddress/AddressLine1 | 0 | 21345 Miles Drive |
| ReturnHeader/Filer/USAddress/City | 0 | West Linn |
| ReturnHeader/Filer/USAddress/State | 0 | OR |
| ReturnHeader/Filer/USAddress/ZIPCode | 0 | 97068 |
| ReturnHeader/Officer/DateSigned | 0 | 2011-07-08 |
| ReturnHeader/Officer/Name | 0 | Dean Suhr |
| ReturnHeader/Officer/Phone | 0 | 5036564808 |
| ReturnHeader/Officer/Title | 0 | President |
| ReturnHeader/ReturnType | 0 | 990EZ |
| ReturnHeader/TaxPeriodBeginDate | 0 | 2010-01-01 |
| ReturnHeader/TaxPeriodEndDate | 0 | 2010-12-31 |
| ReturnHeader/TaxYear | 0 | 2010 |
| ReturnHeader/Timestamp | 0 | 2011-07-08T16:17:15-07:00 |
Document Assets
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Filings
Displayed year
2010 • Form 990EZFacts available. Structured filing facts are available, but richer extracted sections are limited.
- Assets
- $47,190
- Liabilities
- $2,852
- Net assets
- $44,338
- Revenue
- $80,367
- Expenses
- $77,358
- Net income
- $3,009