Who We Are
What is LCC?
Leukoencephalopathy with calcifications and cysts (also known as Labrune Syndrome) is categorized as a leukodystrophy, a condition impacting the brain’s white matter. White matter plays a crucial role in transmitting information within the brain, and when it’s affected, information processing can be disrupted or incomplete. This disorder stems from an autosomal mutation of the SNORD-118 gene, leading to the formation of calcifications and cysts in the brain. Diagnosis typically relies on radiologic and genetic testing. Symptoms commonly include seizures, dystonia, movement disorders, and global developmental delays, among others.
Our Story
The LCC Foundation was created in April 2022 by myself, Ashley Dike, a year following my son’s diagnosis of Leukoencephalopathy with Brain Calcifications & Cysts (LCC/Labrune Syndrome). With this devastating diagnosis, I became determined to stay positive and do all I can to save Ben’s life. After meeting other affected families in July 2023, I have become even more determined to advocate and fund research efforts, to treat and save others!
Our Mission
The LCC Foundation’s MISSION is to help families across the United States and beyond diagnosed with Leukoencephalopathy with Brain Calcifications and Cysts (LCC) by giving them the resources they need to fight this rare and devastating disease. We advocate funding research efforts that will identify new treatments, therapies, and ultimately a cure for LCC. We seek to raise awareness of LCC thus increasing the probability of earlier diagnosis and treatment.