Bill > SR0176

This resolution designates June 20, 2025, as FSHD Awareness Day in the State of Illinois, highlighting the significant challenges faced by individuals with Facioscapulohumeral muscular dystrophy (FSHD), a rare genetic neuromuscular disease. The resolution provides context about the condition, noting that it affects approximately 40,000 Americans, can develop at any age, and causes muscle weakness in the face, shoulder girdle, and upper arms. It emphasizes the difficulties patients experience, including an average nine-year diagnosis timeline, potential wheelchair dependence for 20 percent of patients, respiratory complications, chronic pain and fatigue, and significant impacts on daily mobility. The resolution aims to raise awareness about FSHD, underscore the critical need for continued medical research and treatment development, and draw attention to the struggles of those living with this challenging genetic disorder.

Health and Social Services

https://www.ilga.gov/legislation/BillStatus.asp?DocNum=176&GAID=18&DocTypeID=SR&SessionID=114&GA=104