Bill > HR0382

This resolution declares June 9, 2025, as Batten Disease Awareness Day in Illinois, focusing on a rare and devastating neurodegenerative childhood disease characterized by progressive symptoms like developmental delays, vision loss, seizures, and cognitive decline. The resolution provides context about Batten disease, explaining it is a genetic disorder that prevents cells from producing essential enzymes, leading to metabolic waste accumulation and cell death, with at least 14 known variants. It highlights the significant challenges faced by patients and families, including diagnostic difficulties and limited treatment options, with only one FDA-approved therapy currently available. The resolution specifically recognizes Dr. Elizabeth Berry-Kravis from Rush University Medical Center, one of only nine Batten Disease Centers of Excellence in the United States, and her work on cutting-edge genetic treatments. It also commends Charlie Sims, an eight-year-old diagnosed with the CLN1 variant, who has undergone experimental treatments, and his family's organization, Team Charlie, which aims to raise awareness and support research for rare pediatric diseases. By designating this awareness day, the resolution seeks to draw attention to Batten disease, support ongoing research efforts, and honor the resilience of patients and their families.

https://www.ilga.gov/legislation/BillStatus.asp?DocNum=382&GAID=18&DocTypeID=HR&SessionID=114&GA=104