World FSHD Day backstory

Italian brothers’ ordeal sparks a global movement

As we approach our third annual World FSHD Day this June 20th, and the international FSHD community plans to flood their social channels with messages and images to bring attention to the day, we’d like to share the backstory of how June 20 came to be World FSHD Day.

The suggestion came from our colleague Fabiola Bertinotti of FSHD Europe. Fabi, who lives in Rome, first told us about Marco and Sandro Biviano, two young brothers with FSHD from a family living on Lipari, a 14.9-square-mile island north of Sicily. Their two sisters also are affected.

Unable to obtain proper care for their FSHD, in 2013 the wheelchair-bound brothers traveled to Rome and camped out in a tent in Piazza Montecitorio in front of the Italian Chamber of Deputies to demand change. After 700 days of demonstrations, the Italian Ministry of Health agreed to establish a telemedicine system and home care to enable the Biviano siblings to receive medical care in their remote village. The system is being offered to all FSHD patients in Italy who are “machine dependent.”

The government also established June 20, 2015, as the first FSHD Day in Italy in honor of the birthday of the mother of the Biviano siblings.

In a statement to the press, Minister of Health Beatrice Lorenzin announced: “The project makes available for the Biviano family the most advanced technology, which is personalized for the various and unpredictable dysfunctions of the nervous system. The system will be controlled by an operations center that will manage 24-hour monitoring of the vital signs and will maintain appropriate levels of medical therapies in the form of medicines and physical therapy. This system represents the most innovative operation supporting people suffering from progressive and slowly disabling illnesses.

“The tent they had assembled in Montecitorio for almost 700 days, which is the symbol of a fight encouraged by unrealistic hopes―this tent is now taken apart; Sandro and Marco can finally go home where, together with their sisters Palmina and Elena, they can receive all the possible therapies, the same therapies that their territory had denied. This is the kind of answer that patients look for.”

We salute the Biviano brothers for their incredible perseverance and courage. The idea for World FSHD Day crystallized at the 2015 FSHD Champions annual meeting organized by the FSH Society. We thank Natalie Moss of FSHD Global Research Foundation and Fabiola Bertinotti of FSHD Europe, who worked with the FSH Society and SHIFT Communications on the design of the World FSHD Day campaign.

PHOTO CAPTION: The Biviano brothers in Rome, Italy, protesting the lack of adequate medical care for people in remote areas with FSH muscular dystrophy.