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1
SENATE 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 SENATE OF THE ONE HUNDRED FOURTH GENERAL 
12ASSEMBLY OF THE STATE OF ILLINOIS, that we declare June 20, 
132025 as FSHD Awareness Day in the State of Illinois.