Attendees at the first Mito Walk and Roll 5K in 2013. Photo by Peggy Andrews/Plá Photography.
When Brayden Burge was 15 months old, his parents noticed a significant drop in his skills and a sudden increase in illness. Brayden was taken to the University of California, San Diego Health System and diagnosed with mitochondrial disease. With daily therapy, he regained his skills and for a few years, lived life to its fullest. Then in 2011, Brayden’s health took a dramatic downturn: he spent most of the next two years in the hospital. In 2013, shortly after his ninth birthday, Brayden passed away. To honor Brayden’s memory, the 2nd annual Mito Walk and Roll 5K will bring together the San Diego community on Saturday, May 17 at Liberty Station in Point Loma to support research for mitochondrial disease.
A genetic disorder, mitochondrial disease (MD) results from failures of the mitochondria, the cellular organelles responsible for more than 90 percent of all energy needed to sustain life and support growth. Children born with MD currently have a 50 percent chance of living past age 10 and only 20 percent of making it to age 20. Proceeds from the Mito Walk and Roll 5Kwill support research at the UC San Diego Mitochondrial and Metabolic Disease Center, one of the world’s leading institutions for the diagnosis and treatment of childhood metabolic disease.
“Mitochondrial medicine is a fast-growing field of study—not only because it affects children with the genetic disease, but because mitochondrial dysfunction lies at the heart of some of the most prevalent chronic diseases known to medicine, including diabetes, cancer, Alzheimer’s and Parkinson’s diseases,” said Robert K. Naviaux, M.D., Ph.D., co-director of the UC San Diego Mitochondrial and Metabolic Disease Center. “Support from the Mito Walk will provide our world-class scientists with resources to further our understanding of these diseases, with the goal of finding better diagnostics and treatments for patients.”
Currently, MD can be difficult to diagnose and complex to manage. For Christina Whaley, the lead organizer of the Mito Walk and Roll 5K, it took two-and-a-half years of tests and medical specialists for her and her husband to learn that their 3-year-old daughter has NARP (Neuropathy, Ataxia and Retinitis Pigmentosa), a mitochondrial disease that impacts balance, vision and other movement. They later learned that their younger daughter also has the disease. Naviaux and his team at the UC San Diego Mitochondrial and Metabolic Disease Center made the diagnosis of NARP and helped evaluate other family members for the DNA mutation that causes this disesae.
“We cherish our girls every day. We strive to make every precious moment with them count,” said Whaley. “Our goal is to enable leading scientists to continue to search for treatment, and ultimately a cure, for children and young adults suffering from mitochondrial disease, as well as raise awareness of the link between MD and many other common adult diseases.”
Support for the Mito Walk and Roll 5K comes from community members and Sycuan Youth Council and Sycuan Casino, platinum sponsor of the 2014 event. The Mito Walk will include live music, interactive games, face painting, a classic car show, food vendors and other activities. Registration is $30 for youth (ages 6-17) and $35 for adults (ages 18 and up). Register online or contact UC San Diego Health Sciences Development at (858) 246-1567 or firstname.lastname@example.org.
For more information about the Mito Walk and Roll 5K, visit mitoresearchfund.org.