Diagnostic Testing Fund – Pediatric Central Nervous System: Neurodevelopmental and Neurodegenerative

This fund supports children experiencing loss of motor or cognitive function who may be facing a rare neurodevelopmental or neurodegenerative condition. It provides access to diagnostic testing — including genetic sequencing and metabolic panels — to help confirm conditions such as Batten disease, alpha-mannosidosis, or lysosomal storage disorders. Early and accurate identification is critical for guiding treatment decisions, care planning, and connecting families with long-term support services.