Illinois General Assembly - Full Text of HR0217

HR0217 LRB104 12915 MST 24451 r

HOUSE RESOLUTION

WHEREAS, Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic neuromuscular disease that leads to the weakening of skeletal muscles; and

WHEREAS, FSHD gets its name from the muscles affected in the face (facio), shoulder girdle (scapulo), and upper arms (humeral); and

WHEREAS, Individuals with FSHD, like those with other rare disorders, often experience challenges in obtaining a timely diagnosis, which takes an average of nine years for this condition; and

WHEREAS, An estimated 1 in 8,000 individuals, or 40,000 Americans, are living with FSHD; and

WHEREAS, FSHD symptoms can develop at any age, from infancy through adulthood, and can differ in the pattern and severity of muscle weakness; and

WHEREAS, Approximately 20 percent of individuals with FSHD will become dependent on a wheelchair or scooter; and

WHEREAS, Patients with FSHD can develop respiratory insufficiency, which can be fatal, especially in surgical or trauma settings; and

WHEREAS, The majority of individuals with FSHD experience chronic pain and fatigue, which may severely limit daily activities; and

WHEREAS, The loss of upper body mobility is a debilitating symptom of the disease that can significantly impact the ability to perform daily tasks; and

WHEREAS, There is a critical need for continued research and development of new treatments for FSHD; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare June 20, 2025 as FSHD Awareness Day in the State of Illinois.