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1
HOUSE RESOLUTION

 
2    WHEREAS, Facioscapulohumeral muscular dystrophy, or FSHD, 
3is a genetic neuromuscular disease that leads to the weakening 
4of skeletal muscles; and
 
5    WHEREAS, FSHD gets its name from the muscles affected in 
6the face (facio), shoulder girdle (scapulo), and upper arms 
7(humeral); and
 
8    WHEREAS, Individuals with FSHD, like those with other rare 
9disorders, often experience challenges in obtaining a timely 
10diagnosis, which takes an average of nine years for this 
11condition; and
 
12    WHEREAS, An estimated 1 in 8,000 individuals, or 40,000 
13Americans, are living with FSHD; and
 
14    WHEREAS, FSHD symptoms can develop at any age, from 
15infancy through adulthood, and can differ in the pattern and 
16severity of muscle weakness; and
 
17    WHEREAS, Approximately 20 percent of individuals with FSHD 
18will become dependent on a wheelchair or scooter; and
 
19    WHEREAS, Patients with FSHD can develop respiratory 
 
 
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1insufficiency, which can be fatal, especially in surgical or 
2trauma settings; and
 
3    WHEREAS, The majority of individuals with FSHD experience 
4chronic pain and fatigue, which may severely limit daily 
5activities; and
 
6    WHEREAS, The loss of upper body mobility is a debilitating 
7symptom of the disease that can significantly impact the 
8ability to perform daily tasks; and
 
9    WHEREAS, There is a critical need for continued research 
10and development of new treatments for FSHD; therefore, be it
 
11    RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE 
12HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that 
13we declare June 20, 2025 as FSHD Awareness Day in the State of 
14Illinois.