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HR0922 • 2026
FSHD AWARENESS DAY
This bill passed both chambers and reached final enrollment, even if later executive action is not shown here.
Using official source text because the generated explanation was unavailable or could not be confirmed against the official bill text.
FSHD AWARENESS DAY
Resolution Adopted
Recommends Be Adopted Public Health Committee ; 009-000-000
Placed on Calendar Order of Resolutions
Assigned to Public Health Committee
Moved to Suspend Rule 21 Rep. Elizabeth "Lisa" Hernandez
Suspend Rule 21 - Prevailed 066-029-000
Referred to Rules Committee
Filed with the Clerk by Rep. Martin McLaughlin
FSHD AWARENESS DAY
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Full Text of HR0922 Home Legislation Full Text HR0922 - 104th General Assembly Bill Status Full Text Votes Witness Slips Select Menu Bill Status Full Text Votes Witness Slips Printer Friendly Version Introduced Printer Friendly Version Introduced Open PDF HR0922 LRB104 22030 MST 38091 r 1 HOUSE RESOLUTION 2 WHEREAS, Facioscapulohumeral muscular dystrophy, or FSHD, 3 is a genetic neuromuscular disease that leads to the weakening 4 of skeletal muscles; and 5 WHEREAS, FSHD gets its name from the muscles affected in 6 the face (facio), shoulder girdle (scapulo), and upper arms 7 (humeral); and 8 WHEREAS, Individuals with FSHD, like those with other rare 9 disorders, often experience challenges in obtaining a timely 10 diagnosis, which takes an average of nine years for this 11 condition; and 12 WHEREAS, An estimated 1 in 8,000 individuals, or 40,000 13 Americans, are living with FSHD; and 14 WHEREAS, FSHD symptoms can develop at any age, from 15 infancy through adulthood, and can differ in the pattern and 16 severity of muscle weakness; and 17 WHEREAS, Approximately 20 percent of individuals with FSHD 18 will become dependent on a wheelchair or scooter; and 19 WHEREAS, Patients with FSHD can develop respiratory HR0922 - 2 - LRB104 22030 MST 38091 r 1 insufficiency, which can be fatal, especially in surgical or 2 trauma settings; and 3 WHEREAS, The majority of individuals with FSHD experience 4 chronic pain and fatigue, which may severely limit daily 5 activities; and 6 WHEREAS, The loss of upper body mobility is a debilitating 7 symptom of the disease that can significantly impact the 8 ability to perform daily tasks; and 9 WHEREAS, There is a critical need for continued research 10 and development of new treatments for FSHD; therefore, be it 11 RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE 12 HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that 13 we declare June 20, 2026 as FSHD Awareness Day in the State of 14 Illinois. 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