BENEFITING: Ullrich Congenital Muscular Dystrophy
Team Muscle Makers was founded in 2012 by Melissa Mayorgas, just your average mom of two far-from-average little boys. We want to share with you the story of how Team Muscle Makers has come to be and how YOU can make a muscle and make a difference!
In 2011, I made a resolution to train for and run a half marathon, not for anyone else's benefit but my own. In January of 2012, I completed my first half marathon. I was asked several times over the course of the race weekend which charity I was running for, and I didn’t have an answer. This really laid heavy on my heart. Knowing that I wanted to continue running, why would I not run for a charity? I knew immediately that I needed to run for the Muscular Dystrophy Association.
Some of you may know that my son, Parker, has Ullrich Congenital Muscular Dystrophy (UCMD). UCMD is an extremely rare form of Muscular Dystrophy. To date there are only a few hundred documented cases worldwide. It is considered a slowly progressive and life-limiting form of MD.
Parker was diagnosed with UCMD when he was just two years old. Our family pediatrician referred us to a muscle disease specialist after Parker's third visit to the doctor's office for unexplained falls. After a few appointments at the MDA muscle disease clinic, several blood tests and a muscle biopsy, Parker was officially diagnosed. The Muscular Dystrophy Association has been an important part of our family since Parker's diagnosis. We have been blessed to be among the recipients of MDA's support to families of children with muscular dystrophy, and have been treated by an amazing MDA-funded clinic at Rady Children’s Hospital in San Diego. The decision for me to run for the MDA was a no-brainer. The MDA helps provide treatment, durable medical equipment and support services for those affected by Muscular Dystrophy. And, while Parker's case is currently presenting itself in a very mild way, we do not know what our future holds. There are many children that have been affected by Ullrich in a much more severe way and could really use our help.
That's where Team Muscle Makers comes in - we will be participating in the 2015 Tinker Bell Half Marathon Weekend events to raise money to fight UCMD. Not only am I running, but I have a whole team of family and friends who love Parker and believe in the cause that will be running alongside me. We hope you’ll be a part of our team, or contribute by making a donation.