World FSHD Day Date in the current year: June 20, 2026

Muscular dystrophies are a group of genetic diseases that cause progressive muscle weakness. There are more than 30 different types of muscular dystrophy described in medical literature. The three most common are Duchenne muscular dystrophy, which accounts for about half of cases, myotonic dystrophy, and FSHD.

FSHD is caused by a mutation in the DUX4 gene, which is not normally expressed in muscle cells. When this gene is expressed in muscle tissue, it results in muscle weakness that starts in the face and progressively “descends” to the legs. Facial muscle weakness often makes it difficult for patients to fully close their eyes, purse their lips, and raise the corners of their mouths. It may also make it harder to produce certain sounds, resulting in less distinct speech.

Facial muscle weakness is usually followed by weakness in the shoulder and upper arm muscles. This can cause the shoulder blades to protrude outward and make it difficult to lift the arms above shoulder level. As the disease progresses, it may affect the abdominal, hip, thigh, and lower leg muscles. One side is often affected earlier than the other. Other common symptoms include chronic muscle pain and fatigue.

The prognosis for FSHD is highly variable. Some people have only mild symptoms throughout life and remain fully independent, while others develop significant weakness that affects mobility and daily activities. While most individuals with FSHD do not experience life-threatening complications, some eventually require a wheelchair.

There is no cure for FSHD. Treatment focuses on managing symptoms and preserving muscle function. It usually includes physical and occupational therapy, aerobic exercise, orthotic devices, kinesiology tape, pain management, and reconstructive surgery for patients with severe shoulder weakness.

The history of World FSHD Day began in 2013 when Marco and Sandro Biviano, two brothers diagnosed with FSHD, traveled from their remote village on the small island of Lipari to Rome in order to advocate for better care for themselves and their two sisters, Palmina and Elena, who were also affected by the disease. The wheelchair-bound brothers camped out in a tent in front of Palazzo Montecitorio, the seat of the Chamber of Deputies, to demand change.

After 700 days of demonstrations, the Italian Ministry of Health announced the establishment of a telehealth system and home care that would enable the Biviano siblings and other FSHD patients to receive proper medical care. Additionally, the Italian government designated June 20 as FSHD Day. The date was chosen because it is the birthday of the Biviano siblings’ mother.

During the 2015 FSHD Champions Summit, Fabiola Bertinotti of FSHD Europe shared this story, and World FSHD Day was born. It was first celebrated on June 20, 2016. The day’s main goals are to raise global awareness of FSHD, advocate for further research into better treatments and eventually a cure, and raise funds to support affected individuals and their families.

One of the easiest ways to participate is to join the Orange Slice Selfie Campaign. People with FSHD often have difficulty smiling due to facial muscle weakness. To raise awareness of this common symptom, participants take selfies holding an orange slice over their mouths to resemble a smile. They then share the photos online using the hashtags #WorldFSHDDay, #FSHD, and #CureFSHD.