BENEFITING: CURE CMD
EVENT DATE: Oct 19, 2013
Our daughter Olivia was diagnosed with a rare form of congenital muscular dystrophy called CMD LAMA2, or merosin-deficient CMD. There is currently no cure or treatment for this disease. Most of the children with this condition will never walk and are faced with tremendous health challenges, as even a simple cough or runny nose can turn into a serious lung infection requiring hospitalization. The lifespan of children with this disease is greatly shortened due to respiratory distress and most children do not live past young adulthood.
Olivia will never run, jump, or dance like we all did as children. These kids struggle to lift their heads, bear weight on their arms and legs and most must navigate their lives from the confines of a wheelchair. All of that said, there is significant hope in the medical community that treatments are within reach. Sara and I have been working with a not-for-profit called Cure CMD and a biotechnology company focused on a treatment for CMD to help fund and advance the initiatives for the treatments of Olivia’s condition.
So on October 19th, 2013 we will be Olivia's legs and she will fill our hearts. As part of the Kansas City Marathon, we are creating a team to run in the race as an effort to find a cure for Olivia. 100% of the contributions raised for Cure CMD will be used to fund research. The race is comprised of a 5k, a half-marathon and a full marathon, which means anyone can realistically participate if they would like! Thank you for reading our story and supporting our cause, every thought, prayer, and dollar takes us one step closer to a cure.