From the Community

Stories

Updates on Charlie, research, and the people fighting for hope.

Charlie with his mom and dad at the Walk with Charlie, all wearing Team Charlie teal shirts, with teal and orange balloons in the background.

EventsJune 7, 2025

2nd Annual Walk With Charlie

See highlights from the 2nd Annual Walk With Charlie, which raised more than $30,000 for rare pediatric disease research at Rush.

Charlie with his family, Sharon King of Taylor's Tale, Dr. Elizabeth Berry-Kravis, and Dr. Steven Gray at the 2024 NCL International Research Conference in Chicago.

Charlie's StoryNovember 24, 2024

At the Frontier: Team Charlie at the 2024 Batten Disease Research Conference

Team Charlie attended the 2024 Batten Disease Research Conference and met the researchers behind Charlie's CLN1 gene therapy.