UNDERSTANDING NPC and other CHildhood Dementias
The Heart of the Battle against Childhood Dementia
More than 100 genetic disorders can cause childhood dementia. A terminal and progressive loss of neurologic function.
Around 700,000 children worldwide are living with these fatal progressive brain diseases.
Families often wait years for a correct diagnosis and then have to fight for basic care, equipment, and access to treatment.
We are working to change that.
What We Do
Educate
We help the public, schools, and care teams understand childhood dementia and what kids like Abby need to live their best possible lives.
Advocate
We meet with lawmakers, agencies, and insurers to fight for newborn screening, access to treatments, and ethical clinical research.
Connect
We link families, clinicians, and researchers so local stories fuel national and global change for childhood dementia.
Join Our Journey: Upcoming Events & Discussions
Community Stories
Explore personal accounts and updates from the resilient families and individuals in our community. Every story shared brings us closer to a cure and strengthens our collective spirit.
