The Premier Family Resource for Metachromatic Leukodystrophy Information & Support since 1999
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What is MLD?

Metachromatic Leukodystrophy (MLD) is a progressive, genetic disease that affects the central nervous system due to the lack of an enzyme, Ayrlsulfatase-A (ARSA.) Over 300 mutations of the ARSA gene on Chromosome 22 are known to cause MLD. 1 in 100 people are carriers of genetic mutations, and 1 in 40,000 babies are born with MLD. Of the three types of MLD, Late Infantile, Early Juvenile and Adult Onset, Late Infantile is the most common. While there is now a form of gene therapy available for presymptomatic cases, Lenmeldy®, there are no effective treatments for symptomatic MLD.

For more comprehensive information on MLD, visit MLD 101.

What We Do

The MLD Foundation supports and empowers families living with Metachromatic Leukodystrophy through community and compassion for families, increasing awareness, influencing and funding research, and promoting education. 

At the MLD Foundation, We C.A.R.E®: 


We support and connect families to find mutual support through shared experiences virtually and in person.

Join our Community on Facebook

Learn about the upcoming MLD Family Conference


The MLD Foundation works on behalf of patients and families to increase awareness of MLD and advocate for newborn screening and treatments at the state and federal levels.

Why Newborn Screening Matters

Upcoming Advocacy Events


We work alongside researchers, pharmaceutical companies, clinicians and more in efforts to treat and cure MLD.

Learn about gene therapy and the newly FDA approved treatment for MLD, Lenmedly® created by Orchard Therapeutics


Whether you are newly diagnosed or simply wanting to learn more, we provide a number of resources – including an extensive video library – to learn about MLD.

MLD Video Library

MLD 101

MLD Foundation News & Upcoming Events

Together, We Can Make a Difference.

For over 20 years, the MLD Foundation has bought our mission of C.A.R.E. to families affected by MLD. From diagnosis and beyond, we provide support, education, resources, and help advance research to eliminate MLD. Please consider a donation to show your support.