Matt Bloomfield wrote -
As many of you may know, our daughter Olivia was diagnosed with a rare form of congenital muscular dystrophy called MDC1A, 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.
While Olivia and other children with this disease battle each day to lift their heads, bear weight on their arms and legs or attempt to navigate their lives from the confines of a wheelchair, 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 CureCMD and a biotechnology company focused on a treatment for MDC1A to help fund and advance the initiatives for the treatments of Olivia’s condition. However, the prevalence of this disease is quite small, and the major pharmaceutical companies have been much more focused on drugs and treatments that will produce higher profits than a rare disease such as MDC1A.
This is where all of us have the ability to help Olivia and other children with muscle disease. As part of the Kansas City Marathon on October 19, 2013, we are creating a team to run in the race and to raise money for CureCMD and the research they sponsor. The proceeds raised for CureCMD go to funding research for congenital muscular dystrophy. The race is comprised of a 5k, a half-marathon and a full marathon, which means anyone can realistically participate if they would like! For those not able to run or walk, volunteers would always be welcome to help encourage runners and support their efforts. And for those not able to make it to Kansas City, any runner would welcome a donation.