FSHD patients, their families and their supporters as well as advocacy organizations will come together to urge a cure for one of the most prevalent forms of muscular dystrophy.
FSHD Champions, the international alliance of FSHD advocacy groups are asking patients, families, friends, caregivers, physicians, researchers and allies to share the World FSHD Day logo on their social media channels.
In the United States, advocates in the Massachusetts state legislature are organizing to have June 20 be officially proclaimed World FSHD Day. Similar activities are taking place in other countries such as Australia, Canada, China, France, Italy, Japan and the United Kingdom.
FSHD is so named because of the type of progressive loss of all skeletal muscle, where weakness is usually noticeable across facial (facio), back (scapula) and upper arm (humeral) muscles. A genetic disorder, its prevalence is around one in 20,000 people, though a 2014 Dutch study reported a much higher prevalence of nearly one in 8,000.
Estimated to affect about 870,000 individuals worldwide, the actual number of individuals with FSHD could be significantly higher due to undiagnosed cases.
The FSH Society has prepared an event toolkit for anyone wishing to host their own set of activities that day.
“This is the first time that the FSHD community has come together like this – mobilizing people from across the world, with different backgrounds, languages and experiences,” Daniel Perez, co-founder, president and CEO of the FSH Society, said in a press release. “By raising awareness, we can make sure FSHD patients and families know that they are not alone, and we can help mobilize public attention and resources to ensure a better future for everyone affected by this disease.”
Those wishing to take part in this special day who cannot any events can still help by spreading the word on social media, by using the event hashtags #WorldFSHD and #CureFSHD or by sending selfies and photos to the FSH Society for dissemination through its own social media.
The campaign will also feature a compilation of videos sent by patients and supporters. Since orange is the international color of World FSHD Day, the society asked everyone to send a creative video using an orange slice to spread the word while reading a script. The video will be shared on social media on June 20.
In case of questions about the campaign, send an email to June.Kinoshita@fshsociety.org.