Nonprofit · EIN 93-1320953
MLD FOUNDATION
Tax-exempt · WEST LINN, OR 97068
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990-EZ | $111,163 | $135,765 | -$24,602 | $29,430 | $0 | $29,430 |
| December 31, 2023 | 990-EZ | $141,705 | $151,614 | -$9,909 | $25,309 | $0 | $25,309 |
Financial details: 990-EZ for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $111,161
- Program service revenue
- $0
- Investment income
- $2
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $0
- Compensation of officers, directors and key employees
- $0
- Salaries, compensation and benefits (total)
- $0
- Professional fees and payments to contractors
- $4,824
- Occupancy
- $5,305
- Printing, publications and postage
- $142
- Other expenses
- $125,494
- Program services (functional)
- $125,144
Balance sheet and other
- Total assets, start of year
- $57,820
- Total assets, end of year
- $29,430
- Total liabilities, end of year
- $0
- Net assets, end of year
- $29,430
- Cash, savings and investments
- $29,430
- Gross receipts
- $111,163
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990-EZ for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Christine Hoffmann | Director | 1 | $0 |
| Marc Patterson MD | Director | 1 | $0 |
| Wilson Smith | Director | 1 | $0 |
| Teryn Suhr | Executive Director | 30 | $0 |
| Dean Suhr | President | 40 | $0 |
990-EZ for the year ended December 31, 2023: 5 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Christine Hoffmann | Director | 3 | $0 |
| Marc Patterson MD | Director | 1 | $0 |
| Wilson Smith | Director | 1 | $0 |
| Teryn Suhr | Executive Director | 25 | $0 |
| Dean Suhr | President | 30 | $0 |
Address and contacts
- Address (IRS master file)
- 21345 MILES DR, WEST LINN, OR 97068-2878
- In care of
- % DEAN SUHR
- Signed the 990-EZ
- Dean Suhr, President
- Phone
- (503) 656-4808
- Website
- https://MLD.foundation
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.
Program accomplishments
- 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
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990-EZ on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990-EZ on file |
IRS record
- EIN
- 93-1320953
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (509(a)(2))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2003
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G80)
- Assets (IRS master file)
- $29,430
- Income (IRS master file)
- $111,163
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990-EZ | December 2024 | $111,163 | $135,765 | $29,430 | XML |
| 990-EZ | December 2023 | $141,705 | $151,614 | $25,309 | XML |
| 990-EZ | December 2022 | – | – | – | IRS |
| 990-EZ | December 2021 | – | – | – | IRS |
| 990-EZ | December 2020 | – | – | – | IRS |
| 990-EZ | December 2018 | – | – | – | IRS |
| 990-EZ | December 2017 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 93-1320953).
Questions about MLD FOUNDATION
- What is the EIN of MLD FOUNDATION?
- The employer identification number (EIN) of MLD FOUNDATION is 93-1320953.
- Is MLD FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2003.
- Are donations to MLD FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does MLD FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of MLD FOUNDATION due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did MLD FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990-EZ for the year ended December 2024.
- Who are the officers and directors of MLD FOUNDATION?
- The 990-EZ for the year ended December 31, 2024 lists 5 people; 0 received compensation from the organization.
- How much revenue does MLD FOUNDATION have?
- On its 990-EZ for the year ended December 31, 2024 it reported revenue of $111,163, expenses of $135,765 and total assets of $29,430 at year end.
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