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No family should
face PMD alone

From diagnosis to daily life, we stand alongside families affected by Pelizaeus-Merzbacher Disease.

Donate and support Families Learn about PMD & PMLD

Newly diagnosed with PMD or PMLD? 

child in wheelchair smiling wearing a bear hat
A PMD diagnosis might feel overwhelming, but we are here to help you understand 
your disease journey. Learn more about PMD, what it means for your child and your family, and what to do next.   

Living with PMD & PMLD

parent and child in a wheelchair
Living with PMD and PMLD can have an impact on day-to-day life, including education, finances, travel, and emotional wellbeing. Find information and support to help your child live well, physically, emotionally, and practically.  

For healthcare professionals

carer and child using a walker
We provide research information and education to healthcare professionals, helping ensure that those living with and affected by PMD get the best treatment and care.  

Helping families navigate life with PMD & PMLD

The PMD Foundation brings together families, clinicians, and researchers to support the lives of those affected by PMD and PMLD, and move the future of care forward.

Learn more about us

Carrying hope forward through research

Progress matters for families living with PMD and PMLD. We support research that deepens our understanding of these conditions and brings new treatments closer.

Learn more about our research and progress

$550k+
$550,000+ raised in research funding and grants to support scientific research 
of PMD
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a parent and their child smiling
two members of the family support group smiling
2500+
2500+ families reached globally
a child in a wheelchair in a car smiling with two dogs
a parent smiling with their child
a child in a wheelchair and their carer both dressed in fancy dress
1 - 6
1 global community spanning 6 continents
a child in a wheelchair
a doctor smiling at another
a parent kissing their child on the cheek
PMD
Leading recognition of PMD in multiple national rare disease registries
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a man in a wheelchair smiling
a child smiling in a car with two dogs
FDA
Leading patient engagement in partnership with the FDA
a child in a wheelchair smiling
a microscope
a child in bed smiling

Stories from the PMD community

Families living with PMD show extraordinary resilience every day. These are their stories: learning, adapting, finding their way forward and sharing their insights along the way.

Read all stories
“As parents, we would gift our son our legs, our brains, our hands, our voice, everything until there is nothing else to give, if that would replace what he’s missing.”
-Carlos Labrada, Leonardo’s father 

Brant Dunham, Family Story

Hi, My name is Angi and I am mom to my son, Brant, now four years old, who is the center of my universe. He is fiercely loved by my husband and I, his older sisters, and everyone who is uniquely blessed to know him. He is a sufferer of Pelizaeus-Merzbacher Disease.

Gasperetti Brothers, Family Story

My name is Robert and I live in Franklin Square, New York with my family. My wife Kristen and I have four sons; Brian (27) Trevor (25), Andrew (22), and Dylan (20). All of them are currently living at home.

Jaden Manley, Family Story

Hello, my name is Dave and this is my son Jaden. We live in Mexico, NY. Jaden is 21 years old and we received his diagnosis of Classic Pelizaeus-Merzbacher Disease when he was only 18 months old.

Help families affected by PMD & PMLD

Your support funds research, resources, and community programs that make a real difference in the lives of families navigating PMD and PMLD.

Donate and support Families More ways to help
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