Mld Foundation
Nonprofit profile at a glance
- EIN
- 931320953
- IRS 990-EZ coverage
- 2010–2024
- Forms available
- Form 990-EZ 2024
- Location
- West Linn, OR, USA
- Phone
- 5036564808
- Rating
- 94
- Verdict
- STRONG
- Rating confidence
- Moderate
- Sector
- Specifically Named Diseases
Reported finances
- Revenue
- $111,163
- Expenses
- $135,765
- Assets
- $29,430
- Liabilities
- $0
Source: IRS Form 990-EZ. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
5 people listed
Executive titles in this filing
- Teryn Suhr (Executive Director)
- Dean Suhr (President)
People named in this filing
- Christine Hoffmann (Director)
- Marc Patterson MD (Director)
- Wilson Smith (Director)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990-EZ. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
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 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.
What it reported doing in 2024
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).
Operating model
- Revenue model
- Donor-supported. 100% of the money available for current operations came from contributions and gifts.
- Distribution model
- Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Expenses are high relative to revenue and total assets are small relative to annual expenses; liquid coverage is unknown.
Rating breakdown
- Financial Efficiency: 97
- Transparency & Controls: 100
- Sustainability: 26
- Growth: 80
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 100%; rating input score 100
- Program expense ratio: 92.2%; rating input score 92
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
Sustainability
- Operating margin: -22.1%; rating input score 7; 7th percentile among comparable filings
- Total-asset coverage ratio: 0.22; rating input score 20; 20th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 76; 76th percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 63; 63rd percentile among comparable filings
Growth
- Program expense growth: 3.4% per year; rating input score 100; 42nd percentile among comparable filings
- Revenue growth: 1.4% per year; rating input score 100; 28th percentile among comparable filings
- Asset growth: -5.9% per year; rating input score 0; 15th percentile among comparable filings
Details
- Where the money goes: 100% of revenue deployed · 92.2% of spending went to programs
- Governance: Filed governance answers
- Accomplishments: 4 filed program accomplishments · $125K in reported program spending
- Leadership: top reported pay $0 · 5 people listed
- Consistency: 9 of 9 current checks pass
- Schedules: 3 filed schedules
- Filing history: 14 filing years from 2010 to 2024
- Contacts: How to reach this organization
- Money network: Resolved incoming and outgoing counterparties from filed money flows.
- Related organizations: Filed and resolved organization relationships.
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Sustainability: Operating margin scored 7/100.
- High — Sustainability: Total-asset coverage ratio scored 20/100.
- High — Growth: Asset growth scored 0/100.