Meet Jake - A typical 12-year-old whose infectious smile and boisterous laugh can light up the room. Like many kids his age, Jake loves hanging out with friends, building with Legos and can create an impressive mansion in Minecraft.
However, unlike most his age, Jake’s challenges extend well beyond deciding what sport to play next season or getting good grades in school. Jake is fighting a battle no child should have to face – Duchenne muscular dystrophy, the most severe and devastating form of muscular dystrophy.
Duchenne results from an absence of dystrophin, a protein critical to muscle function and well-being. Because the Duchenne gene is found on the X-chromosome, it primarily affects males. However, Duchenne crosses all races and cultures, occurring in about one in 3,500 live male births throughout the world.
As a genetic disorder, Duchenne can be passed down from parent to child, but approximately 35% of cases are caused by spontaneous genetic mutation. As the Pritchards, who lack any family history of the disease, have learned, Duchenne can affect anyone.
Although no cure or effective treatment exists for Duchenne, scientists are closer than ever to developing real treatments that could significantly lessen the devastating effects of this disease.
All proceeds of the Brookhaven Family Run benefit Parent Project Muscular Dystrophy (tax ID: 31-1405490) and go towards researching a treatment for Duchenne in honor of Jake.
Founded by parents of children with Duchenne, PPMD is the leading nonprofit in the fight to end Duchenne.