Hamilton-based organization, Ryan’s Quest, helped the Duchenne Alliance declare June Duchenne Awareness Month.
Duchenne is a type of muscular dystrophy, which causes muscular degeneration is males. The gene for the disease is carried in the X chromosome.
Ryan’s Quest is a member of the Duchenne Alliance, which is an international consortium of organizations committed to funding research to treat or cure Duchenne muscular dystrophy.
Scientific Advisor to the Duchenne Alliance, Carlo Rago, said Duchenne is the number one genetic killer of children.
“It destroys children and often families, the average life expectancy of a child diagnosed with Duchenne is 20 years. Much of that brief life is spent losing mobility, confined to a wheelchair, with a respirator, until, ultimately, the disease attacks the heart and lungs,” Rago said in a statement.
Much of the global Duchenne community has adopted an hourglass logo with the tagline, “Give Them More Time.”
For the month of June, the Duchenne Alliance is calling on the global community to show its support for finding a treatment or cure for Duchenne.
The alliance is asking anyone with a connection to muscular dystrophy, as well as the general public, to “like” the Duchenne Alliance page on Facebook and change their profile pictures to the hourglass logo.
Additionally, they are asking supporters to tweet about the Duchenne Alliance using @DuchenneAll or #DuchenneAlliance.
More information is online at duchennealliance.org.
