June 20, 2026
WHEREAS, Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic neuromuscular disease (NMD) that leads to the weakening of skeletal muscles;
WHEREAS, FSHD’s name comes from the typical pattern of weakness at onset: the face (facio), shoulder girdle (scapulo), and upper arms (humeral);
WHEREAS, individuals with FSHD, like many other rare disorders, experience challenges with obtaining a diagnosis with the average time to receive an accurate FSHD diagnosis being 9 years;
WHEREAS, an estimated 1 in 8,000 individuals, or over 40,000 Americans are living with FSHD;
WHEREAS, FSHD symptoms can develop at any age, from infancy through advanced age and can differ in the typical initial pattern of muscle weakness;
WHEREAS, about 20 percent of FSHD patients overall will become dependent on a wheelchair or scooter;
WHEREAS, patients with FSHD may become respiratory insufficient if they have progressive weakness of respiratory muscles and/or a scoliosis, which can be fatal;
WHEREAS, over 70 percent of FSHD patients experience debilitating pain and fatigue, which can severely limit daily activities;
WHEREAS, the loss of upper body mobility is a debilitating symptom of the disease that significantly impacts patients’ ability to perform daily tasks necessary to take care of themselves;
WHEREAS, there is a critical need for research and development to advance treatments for FSHD;
NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim June 20, 2026 as FSHD Awareness Day in Michigan.
