Leukoencephalopathy
with Calcifications and Cysts (LCC/Labrune Syndrome)
Welcome to the LCC Foundation
CFC# 22895
**Pledging begins in September**
View our GuideStar/Candid Profile:
Hours of Hope
LCC’s 65 Hours of Movement Challenge
(Virtual Event)
September 1-30, 2024
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.
How You Can Help
The mission of the LCC Foundation is to support families affected by Leukoencephalopathy with Brain Calcifications and Cysts (LCC) across the United States and globally. We strive to provide resources to aid in the battle against this rare and debilitating disease. Our focus lies in advocating for funding towards research endeavors aimed at discovering novel treatments, therapies, and ultimately a cure for LCC. Additionally, we aim to raise awareness about LCC, enhancing the chances of early diagnosis and intervention.
Living with LCC
Living with Labrune Syndrome, also known as Leukoencephalopathy with Calcifications and Cysts (LCC), can be challenging and complex due to the range of symptoms and their impact on daily life. Individuals with Labrune Syndrome may experience a variety of neurological symptoms, including seizures, dystonia, movement disorders, and developmental delays. These symptoms can vary in severity and may change over time, making it difficult to predict how the condition will progress.