Rare to Remarkable

Every family who hears the words "LCC" or "Labrune Syndrome" for the first time starts in the same place: rare, isolating, and uncertain. LCC/Labrune Syndrome is caused by mutations in the SNORD118 gene, affecting the brain's white matter and leading to progressive neurological symptoms. Only a small number of families worldwide are living with it — which means research is scarce, specialists are few, and answers are hard to find.

That's where our community steps in. What starts rare doesn't have to stay isolating — with the right support behind it, it becomes remarkable.

The LCC Foundation funds medical research toward clinical trial readiness, helps families cover the travel costs of reaching the specialists who understand this disease, and builds a network so no LCC Warrior or their family has to navigate this alone. Every dollar raised moves us closer to treatments, and every connection made reminds a family that they're seen.

This is where you come in. Rather than just giving once, you can start your own fundraising page and rally the people in your life — your neighbors, your coworkers, your book club — around this cause. Fundraise in honor of a Warrior you know, in memory of someone this disease has touched, or simply because you believe rare diseases deserve remarkable attention. Every page, every share, and every gift adds up to real progress on research and real relief for families in the middle of the hardest chapter of their lives.

You are not alone, and there is hope — and it grows every time someone new joins us.

Start your own fundraising page today and help take LCC from rare to remarkable.

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