Bill > HR0344

This resolution declares May 28, 2025 as Giant Axonal Neuropathy (GAN) Awareness Day in Illinois, focusing on a rare, terminal, inherited neurodegenerative disorder that primarily affects children and causes progressive muscle weakness and impaired coordination. The resolution highlights that GAN is caused by genetic mutations in the GAN gene, currently has no cure, and affects approximately 75 known individuals worldwide. By establishing this awareness day, the resolution aims to raise public understanding about the disorder, encourage research efforts, and support affected individuals and their families. The resolution calls for collaboration among public and private entities, healthcare professionals, and research institutions to advance medical research and treatment options for GAN. Additionally, the resolution seeks to recognize the challenges faced by individuals living with GAN and their caregivers, and emphasizes the importance of increasing awareness, research funding, and early diagnosis to improve outcomes for those impacted by this rare and devastating condition.

Health and Social Services

https://www.ilga.gov/legislation/BillStatus.asp?DocNum=344&GAID=18&DocTypeID=HR&SessionID=114&GA=104