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MLD FOUNDATION

EIN 93-1320953 WEST LINN, OR

Browse the largest nonprofits in Oregon

Revenue 2024
$111,163
Expenses 2024
$135,765

Program services were 92.2% of total expenses calculated — Part III's total program service expenses over total expenses, both as filed.

As filed

Subsection
03
NTEE code
G80
Classification
1000
Street
21345 MILES DR

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Other organizations at this address

2 other organizations in the IRS Business Master File list the same street address. matched by us

We match the street line and ZIP code as the IRS gives them, ignoring case and outer spaces and nothing else, so "AVE" and "AVENUE" count as different streets and this list can miss some. A shared address can mean related organizations or a shared office, but it can also be a registered agent, a mail drop or a service provider holding mail for unrelated clients. It is not, by itself, evidence that two organizations are connected.

Mission and programs · 2024

Primary exempt purpose

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.

  • COMPASSSION and EDUCATION ... Hosted annual MLD Family Conference(R) in Atlanta, GA bringing families together in person and virtual, along with researchers, clinicians and biopharma parters . Continued online, telephone, and in person family visits in their hometowns. Hosted periodic men's, women's, and couple's virtual gatherings. MLD Family Gatherings(tm) bring 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.

    Expenses $48,581

  • INFLUENCE RESEARCH & AWARENESS - Regularly attend medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, RDCRN/GLIA-LCN meeting, visiting the FDA, NIH, NINDS, World RARE Disease Day events in DC, HHS/HRS/NICHD Newborn Screening meetings, continued RUSP Roundtable meetings, continued support and advancement of MLD newborn screening pilot study, preparing and submitting RUSP nomination, and broad NBS implementation program, continued development relationships with several biotech/pharma companies, 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, genotype-phenotype correlation and newborn screening for rare diseases. Host numerous websites to inform, educate, influence, and support MLD families and research. Engaged in two gene therapy value assessemnts (NICE and ICER).

    Expenses $36,911

  • NEWBORN SCREENING and DIAGNOSTICS ... Early detection and diagnosis is critical for the best outcomes from current and emerging therapies. MLD Foundation continues to drive pilot studies to validate the screen and the NBS diagnostic processes. Established a MLD NBS Expert Advisory Group in Feb 2020 to gather and assess all data justifying the implementation of a MLD NBS, leading the submission of a RUSP nomination to the federal ACHDNC HRSA/HHS committee in August 2024, and collaborating to generate flows for the referrals of babies diagnosed with MLD. These materials will be used for state by state NBS implementation in the US and abroad. Similar efforts are being organized for diagnostic confirmation at later ages.

    Expenses $28,733

  • EDUCATION and PATIENT POWERED SUPPORT AND RESEARCH ... Updated website to MLD.foundation, which is the world's premiere source of online MLD information. The MLD Family(tm) Discussion List and the MLD Family(tm) 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. Continued support and transition of MLD Patient Powered Registry(tm) which captures family demographic information to a new platform. This registry is one of the largest international databases of MLD family histories. Data is compiled and shared in a de-identified manner to improve MLD research, natural history studies, and clinical trials. Also includes electronic and paper publications. (800+ families). Continued work in support of clinical trials in Europe, the US, South America, and the far east. Actively developing and advancing policy to support MLD and rare diseases. Active participant in UK NICE value assessment. Selected as Expert Reviewer for US-based ICER value assessment. Both reviews resulted in positive value assesments.

    Expenses $10,919

As filed on the 2024 return.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • Christine Hoffmann

    Director

    Total calculated
    $0
    Hours/week
    1

  • Marc Patterson MD

    Director

    Total calculated
    $0
    Hours/week
    1

  • Wilson Smith

    Director

    Total calculated
    $0
    Hours/week
    1

  • Teryn Suhr

    Executive Director

    Total calculated
    $0
    Hours/week
    30

  • Dean Suhr

    President

    Total calculated
    $0
    Hours/week
    40

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.

Filings

  • 2024
    Revenue
    $111,163
    Expenses
    $135,765
    Contributions
    $111,161
    Grants paid
    $0
  • 2023
    Revenue
    $141,705
    Expenses
    $151,614
    Contributions
    $94,784
    Grants paid
    $0
  • 2022
    Revenue
    $78,235
    Expenses
    $95,676
    Contributions
    $78,233
    Grants paid
    $0

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990-EZ

    Revenue
    $116,696
    Expenses
    $124,265
    Assets (EOY)
    $53,888

  • 2020 · 990-EZ

    Revenue
    $135,871
    Expenses
    $99,747
    Assets (EOY)
    $60,909

  • 2019 · 990-EZ

    Revenue
    $160,222
    Expenses
    $159,938
    Assets (EOY)
    $26,854

  • 2018 · 990-EZ

    Revenue
    $126,553
    Expenses
    $126,292
    Assets (EOY)
    $25,986

  • 2017 · 990-EZ

    Revenue
    $92,063
    Expenses
    $117,937
    Assets (EOY)
    $25,813

  • 2016 · 990-EZ

    Revenue
    $140,563
    Expenses
    $174,552
    Assets (EOY)
    $56,697

  • 2015 · 990-EZ

    Revenue
    $157,237
    Expenses
    $148,929
    Assets (EOY)
    $94,275

  • 2014 · 990-EZ

    Revenue
    $160,710
    Expenses
    $160,362
    Assets (EOY)
    $81,416

  • 2013 · 990-EZ

    Revenue
    $126,712
    Expenses
    $94,103
    Assets (EOY)
    $84,102

  • 2012 · 990-EZ

    Revenue
    $66,542
    Expenses
    $66,780
    Assets (EOY)
    $65,832

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

No itemized grants to organizations. Schedule I is filed only by organizations that granted more than $5,000 to a recipient, so most filers have none.

Grants received

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 1 November 2026, for every organization at once. Returns through tax year 2024, the newest we have parsed for this organization.