Parent Project Muscular Dystrophy + CODE GIVE215

When Rasha’s three-year-old son Bavi was diagnosed with Duchenne muscular dystrophy, a multi-systemic genetic disorder that causes muscular deterioration of the heart, lung, and skeleton, she had no idea where to turn for help. Rasha says nonprofit group Parent Project Muscular Dystrophy (PPMD) was her “light at the end of the tunnel.” PPMD consists of an amazing group of passionate parents who work tirelessly to alter the anticipated outcome of Duchenne, which primarily strikes male children and typically results in much shorter lifespans than most of us hope for.

Photos care of Parent Project Muscular Dystrophy

Thanks to PPMD, families like Rasha’s are inspired to take matters into their own hands and make a difference for children like Bavi. Rasha says, “They’ve empowered us as a community of families of kids with a rare disease. They’ve given us tools to make our voices heard as we ask for the world to help save our boys.” The PPMD community helps families push through their anguish and sense of helplessness to become activists demanding greater investment in Duchenne research. “I’m learning so much from mothers who have touched me to the very core in what they've done and continue to do,” Rasha declares. “My friend Ellen lost her son this year to Duchenne. He was 19. The family - in their hardest of times - asked for donations to PPMD in lieu of flowers. Every time I remember Ellen's son’s kind eyes and sweet smile, my heart breaks once again. I will try my hardest not to let Duchenne take away any more of our warriors!"

Photos care of Parent Project Muscular Dystrophy
Rasha pushed past her discomfort in sharing her life publicly and wrote about Duchenne for her local paper. Her piece was a gift to readers who had been lost in their own despair, wondering what they could do for their sons. They reached out to Rasha to ask for guidance, and she helped them get on a path that has led one family to an accurate diagnosis for their child and another family to a therapy in development to treat the specific Duchenne mutation their child has. Rasha encourages us all to tell our pediatricians about Duchenne, since rare diseases like Duchenne often get misdiagnosed simply because well-meaning pediatricians who do not know about Duchenne are gatekeepers to correct diagnosis. Want to contribute more, even while doing something you already do? When you purchase PLAE shoes today, use checkout code GIVE215 to donate 10% of your purchase price to PPMD.