Form 990-EZ for tax year 2022

Totals

Total revenue

$78,235

Total expenses

$95,676

Contributions and grants received

$78,233

Grants paid

$0

Program service revenue

$0

Membership dues (line 3)

$0

Investment income (line 4)

$2

Gain or loss on sale of assets (line 5c)

$0

Gaming and fundraising events, net (line 6d)

$0

Gross profit on inventory sales (line 7c)

$0

Other revenue (line 8)

$0

Total assets, end of year

$36,447

Total liabilities, end of year

$0

Net assets or fund balances, end of year

$36,447

Program service expenses (Part III)

$40,278

Program services were 42.1% of total expenses calculated — Part III's total program service expenses over total expenses, both as filed.

Mission and programs · 2022

• COMPASSSION and EDUCATION ... COVID forced a pivot and a deferral of our annual MLD Family ConferenceTM. Continued online, telephone, and in person family visits in their hometowns during. Hosted men's, women's, and couple's virtual gatherings every 4-6 weeks. Meet with 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. Direct family financial support through our independently managed MLD Family Compassion Fund.

  Expenses $14,838 · Grants $969

• 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/NICHD Newborn Screening meetings, organized two RUSP Roundtable meetings (newborn screening policy and technology), continued MLD newborn screening pilot study, defined and sought funding for RANSIP RUSP approval and broad NBS implementation program, started development relationships with two new biotech/pharma companies, terminated a development program with one existing partner, 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, and newborn screening for rare diseases. Host numerous websites to inform, educate, influence, and support MLD families and research.

  Expenses $10,040 · Grants $2,289

• 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, the generation of a RUSP application for the federal ACHDNC HRSA/HHS committee, and to generate flows for the referrals of babies diagnosed with MLD. These materials will be sed ro state by state NBS implementation in the US and abroad. Similar efforts are being organized for diagnostic confirmation at later ages.

  Expenses $11,100

• EDUCATION and PATIENT POWERED SUPPORT AND RESEARCH ... MLDfoundation.org 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. Supported MLD Patient Powered Registry (tm), our Genetic Alliance/PCORI-funded patient-powered research network driven MLD Family registry which 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. (700+ families). Continued work in support of clinical trials in Europe, the US, South America, and the far east.

  Expenses $4,300

As filed on the 2022 return.

Listed in Part IV

Compensation is as filed in Part IV of the Form 990-EZ: compensation, contributions to benefit plans, expense account, 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.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type

form_990_ez

Tax year

2022

Filed

15 November 2023

IRS schema version

2022v5.0

Source object

202333199349205998

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