What states are recognizing tomorrow, September 17th, as the inaugural CTX Awareness Day?

Cerebrotendinous xanthomatosis (CTX) is a rare genetic disorder caused by a deficiency in the enzyme sterol 27-hydroxylase. This enzyme is essential for converting cholesterol into bile acids, which help the body absorb fats and vitamins. Without it, harmful substances build up in the body and lead to serious health challenges such as cataracts, chronic diarrhea, xanthomas, learning difficulties, movement disorders, and progressive neurological decline.

Why Awareness Matters 

One of the greatest challenges in CTX is diagnosis. On average, people wait over 16 years before receiving the correct diagnosis—often after years of unexplained health struggles. While CTX is progressive, there is good news: an FDA-approved treatment exists. Early diagnosis and treatment can change lives.

Your Impact

By declaring CTX Awareness Day, these proclamations are helping families shorten the diagnostic journey and gain access to life-changing treatment. This recognition raises visibility, educates communities, and gives hope to those affected by this rare disease.

Thank you Colorado, Illinois, Indiana, Massachusetts, and Michigan for standing with the CTX community and helping us ensure that no family walks this journey alone.