Patrick and Rebecca May wrote -
A little more than seven years ago, our beautiful daughter, Aubrey came into this world with a dimple and a cry. We were overjoyed, but soon learned she had been born with a rare form of muscular dystrophy. Imagine what it is like to have dreams and plans for your family and for your daughter; only to realize that she has a life-limiting illness that will prevent her from ever having a normal life, that she will never walk, and she will face an uphill battle of health issues as her body slowly deteriorates. We were devastated, but quickly realized we couldn’t just sit back and do nothing. We made a promise to Aubrey, and to ourselves, that we would do everything in our power to help her.
Five years ago, along with two other families, we created the non-profit organization, Cure CMD. Cure CMD’s mission is to bring research, treatments and in the future, a cure for Congenital Muscular Dystrophies. Cure CMD will achieve this mission by working globally together with dedicated parent, government and research advocates. By focusing on this mission, Cure CMD will find and fund high potential research and clinical trials. There is currently no treatment or cure for congenital muscular dystrophy, but there are promising drug treatments on the horizon. Over the past 5 years, Cure CMD has grown to an internationally recognized non-profit organization and directly funded more than $1,000,000 in research grants. One of the main routes of raising funds for Cure CMD has been grass roots fundraising projects, including raising money through marathons run by family members of those with congenital muscular dystrophy. This year, we have decided to organize a group of friends and family to participate in the Kansas City Marathon, and raise funds for Cure CMD.
Although Aubrey can’t run, walk, or even sit herself up in bed when she wakes up in the morning, she is an amazingly happy and smart little girl that brightens the life of anyone that gets to know her. We have hope that Cure CMD will help fund research that will one day improve her quality of life, and the lives of all of the children that suffer from her disease.
Thank you so much for helping us keep that hope alive,
Pat and Becky May