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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!

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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.

LCC Awareness Day declaration

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.

Patient Registry

REDCap stands as a fortified online platform designed to construct and oversee databases and surveys securely. Its efficient workflow facilitates swift project creation and customization through an extensive toolkit adaptable to diverse data collection needs.

Donate

LCC represents a rare genetic disorder without a known cure. Through our collaboration with clinicians, researchers, and patients, we strive to discover improved therapeutic approaches and, ultimately, a cure. Your contributions will significantly advance these endeavors, making a profound impact!

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Shop for official Labrune Gear!

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.