Leukoencephalopathy
with Calcifications and Cysts (LCC/Labrune Syndrome)
Welcome to the LCC Foundation
Have you or someone you love been diagnosed with Leukoencephalopathy with calcifications and cysts (LCC or Labrune Syndrome)? You are in the right place! You are not alone and there is hope!
CFC# 22895
**Pledging begins in September**
Connect. Share. Support.
Living with or caring for someone with Labrune syndrome can be overwhelming—but you’re not alone. The LCC Foundation is proud to offer a new chat feature that helps you connect directly with others in the Labrune syndrome community.
View our GuideStar/Candid Profile:
Introducing the Official LCC/Labrune Syndrome Awareness Day: March 24th!
We are proud to announce the establishment of LCC/Labrune Syndrome Awareness Day, a dedicated day to raise awareness, share stories, and support those affected by Leukoencephalopathy with Brain Calcifications and Cysts (LCC).
Why It Matters
LCC/Labrune Syndrome is a rare, neurodegenerative disorder that profoundly impacts the lives of patients and their families. With limited research and no current cure, awareness is a crucial step toward advancing scientific understanding, improving diagnosis, and fostering hope for treatments.
Join Us in Making a Difference
On this special day, we invite you to stand with us. Whether you share your story, participate in an event, or spread the word on social media, every action brings us closer to a future with answers and hope for those living with LCC.
How to Get Involved
Together, we can shine a light on LCC/Labrune Syndrome and build a community of support and understanding.
Thank you for being a part of this important movement!
Share Your Story
Amplify the voices of those impacted by LCC.
Spread Awareness
Share our social media posts, wear our LCC/Labrune Syndrome Gear or Blue, Pink & Purple Combo.
Support Research
Contribute to ongoing research efforts through donations or community fundraising.
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.
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.
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.