Who We Are
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!
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.
Our MISSION
Leukoencephalopathy with calcifications and cysts (or Labrune Syndrome) is a leukodystrophy, a disorder that affects the white matter in the brain. White matter helps transmit information in the brain and when the white matter is abnormal, the information in the brain gets lost or is only partially processed. This condition is the result of an autosomal mutation of the SNORD-118 gene and can cause calcifications and cysts in the brain. Radiologic and genetic testing is key to diagnosis. Symptoms often include, but are not limited to, seizures, dystonia, movement disorder, global development delay.