Oregon · Nonprofit
MLD FOUNDATION
MLD FOUNDATION (Oregon) receives grants from 9 organizations whose IRS filings report $226,121 to it, the largest being BELIEVING FOR BRYLEIGH FOUNDATION INC ($91,082). 6 of them have funded it in more than one year, and 54% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $111k
- Funders on record
- 9
- Grants received
- $226k
- Net assets
- $29k
What Mld Foundation does
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 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.
As stated on its FY2024 Form 990-EZ.
Programs
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.
$48,581 spent39% of program spendingINFLUENCE 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,…
$36,911 spent29% of program spendingNEWBORN 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.
$28,733 spent23% of program spendingEDUCATION 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.
$10,919 spent9% of program spending
The 4 programs described on its FY2024 Form 990-EZ. Program spending in total: $125,144.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2019 to 2020, from $27k to $61k (+127%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
100% of MLD FOUNDATION’s revenue is contributions — more reliant on donations than three-quarters of its peers (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 5 of the last 8 reported years ran a deficit.
Leadership and staff
Chief executive
Teryn Suhr
Executive Director
As listed on its FY2024 Form 990-EZ.
Who funds it, year by year
2017 → 2023: the base broadened from 1 funder to 3 funders, grant income rose $5k → $33k.
5 of 9 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 54% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of MLD FOUNDATION’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
MLD FOUNDATION leans on a few funders — its largest provides 40% of grant income and the top three 86%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
99% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund MLD FOUNDATION.
Largest funder’s share by year: 2017 100% · 2018 100% · 2019 72% · 2020 35% · 2021 98% · 2022 75% · 2023 76% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
38% of MLD FOUNDATION's funders are still giving 3 years after their first grant; 67% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
54% of MLD FOUNDATION's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $103k that is directly attributable, 100% of it comes from funders outside Oregon, across 3 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $123k arriving through sponsors registered in 5 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
MLD FOUNDATION's revenue grew 21% between 2017 and 2024.
this organization peer median middle 50% of peers· 13,754 health nonprofits $100k–$1M, FY2024
Organizations like MLD FOUNDATION
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Oregon
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Public support
62%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for MLD FOUNDATION: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds MLD FOUNDATION?
- MLD FOUNDATION (Oregon) receives grants from 9 organizations whose IRS filings report $226,121 to it, the largest being BELIEVING FOR BRYLEIGH FOUNDATION INC ($91,082). 6 of them have funded it in more than one year, and 54% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does MLD FOUNDATION have?
- IRS filings report 9 organizations giving $226,121 in grants to MLD FOUNDATION, 6 of which have funded it in more than one year.
- Who is the largest funder of MLD FOUNDATION?
- BELIEVING FOR BRYLEIGH FOUNDATION INC is the largest funder on record, with $91,082 in grants. The full list of funders is on this page.
- How can an organization like MLD FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Oregon. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Mld →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 9 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing