Team Trendsetter has been working closely with local charity JAR of Hope and the Raffone family, whose world was completely rocked by Duchenne Muscular Dystrophy (DMD), on September 13th 2014, when their son Jamesy was 5 years old. Duchenne Muscular Dystrophy (DMD) is a rare mutation of the dystrophin gene that results in severe muscle degeneration.
Between the ages of 9 and 13 boys lose the ability to walk and be confined to a wheelchair. Around 15, they will lose their ability to move their arms, and around 18, they will lose their ability to breathe on their own and require a ventilator, eventually affecting their heart muscle. Without a cure, they will live with Duchenne for less than 25 years. It’s a race against time.
We are working hard to give Jamesy Raffone and thousands of boys just like him the chance to beat a disease that currently has no cure. Upon the diagnosis, Jim Raffone, James’ dad, has dedicated his life to finding a cure. When he was first diagnosed, the doctor told him, “Go home, love your son, there is nothing we can do for him”. But the Raffone family couldn’t do just that, they needed to fight. Over the past 3 years, they have dedicated their lives to raising money in the hopes of finding a cure for Duchenne.