EVENT DATE: Jun 04, 2016
This June, our family will be hosting a very special event- Bradley’s Race 5K & Silent Auction to Cure Duchenne at Cobden Community Park. Our mission is to find a life-saving treatment for Duchenne muscular dystrophy (DMD). Our family first heard about Duchenne when our son, Bradley, was diagnosed in November of 2000. We learned that Duchenne prevents a child’s muscles from absorbing the protein necessary to recover from strain caused during movement. That means every hug, breath and smile from Bradley slowly deteriorates his body. Duchenne Muscular Dystrophy is a fatal genetic disease. Patients with Duchenne typically are diagnosed around age 5 and lose their ability to walk around age 12. Most kids with Duchenne require ventilators during their teenage years and by the time they reach their 20s their hearts are no longer strong enough to beat. There are no survivors. We are grateful that Bradley is still walking and receiving excellent care. We give God all of the glory for what He is doing for Bradley. Bradley's life is far from easy, but he bravely faces each day with determination to go on and overcome the physical hardships that DMD brings. Bradley deals with muscle weakness, fatigue, heart issues, and sleep apnea, and even pain. Yet, he is one of the strongest individuals I have ever known. Drugs that can help Bradley live a longer, stronger life are being developed but families cannot access them without funding for clinical trials. We need to support the scientists and trials that will get these treatments into the bodies of our boys. Below are two research projects that can help Bradley live a longer, stronger life: • Flanigan Duplication Therapy Research Project- Dr. Flanigan’s lab at Nationwide Children’s Hospital is interested in the ability to skip exon duplications. Bradley lives with a duplication of exon 2. Dr. Flanigan’s lab created a new Duchenne mouse model that contains a duplication of exon 2. Pre-clinical data with the mouse has shown that they can restore the skeletal muscle function. Data like this is necessary to approach the FDA to bring this into clinical studies. • Capricor Therapeutics Cardiac Therapy Clinical Trial- CAP-1002 has been formulated to address heart failure, the leading cause of death for those with Duchenne. Capricor has been granted orphan drug designation by the FDA for CAP-1002 for the treatment of cardiomyopathy associated with DMD. This research is particularly exciting because it could potentially help all patients with Duchene regardless of mutation. We invite you to participate in Bradley’s Race 5K & Silent Auction to Cure Duchenne by running or walking the 5K, donating a silent auction item, becoming a sponsor, or simply making a donation of any amount. 100% of the proceeds from this event will fund research to find a cure for Duchenne. Bradley’s Race will be held Saturday, June 4, 2016 from 8am-1pm.