In July of 2008, our world was forever changed, when we learned our 4-year old was born with Muscular Dystrophy. After a brief pause that required us to find the ground under our feet, we immediately sought an expert in the field who could guide us in our pursuit for optimal care and HOPE for our son. We were directed to Cincinnati’s Children’s Hospital and the Neuromuscular clinic of Dr. Brenda Wong. Jake has been under the clinic’s care for two years and continues to thrive as a result of the recommendations and medications we are implementing.
To make right of this very wrong situation, we are determined to contribute positively to the community of professionals and families that are working tirelessly to change the outcome of Duchnenne Muscular Dystrophy.
ACT for MD is an act of love and hope for Jake and his future.
We are seeking to raise the necessary funds to allow Cincinnati’s Children’s Neuromuscular Clinic to create a comprehensive bank of the genetic samples of its patients with Duchnenne Muscular Dystrophy. ACT for MD aims to underwrite the cost of the lab work that will be administered, and the time of the professionals involved, and the cost of transporting each patient and his family member to the clinic for families who couldn’t otherwise participate.
Our goal is $60,000. While this is a lofty initial endeavor, it is an endeavor that will ultimately provide a wealth of information to DMD research - - and potentially a world of hope to our families and boys!