In 2013, our oldest son, Joshua, was diagnosed with Duchenne muscular dystrophy. He was 5 years old at the time and we were devastated with the diagnosis. After doing some research, we found that this disease is the most common form of muscular dystrophy and also the most aggressive. Boys are usually diagnosed around 5 years of age, lose the ability to walk by their mid-teens and most boys with Duchenne don’t survive past their mid-20’s. It was hard to comprehend why our loving, caring and big-hearted son would be thrust onto this fatal path. It was a very difficult time for us as we dealt with accepting that our son would not be like other children. He wouldn’t be able to jump, run, skip or play tag. But most of all, we feared he would lose his life to this disease. As we went through emotional swings on how to move forward with the diagnosis, we quickly realized that we had to do something to try and change the course of this disease. While we do not have the background in medicine or science, we knew that there were other avenues for us to make a difference for Joshua and all those battling Duchenne. With our faith and the support of our family and friends, we set out on a new journey. We dedicated ourselves to learning more about the Duchenne community and the progress that had already been made. In our search, we found CureDuchenne, a national nonprofit that has been leading the effort in finding a cure for Duchenne. CureDuchenne has been working on accelerating potential life-saving therapies for those with Duchenne for more than 16 years. Today, we are focused on funding research, advocacy and the development of therapies to increase accessibility for all those affected by Duchenne. We are committed to doing all we can to change the life trajectory of this generation of boys and young men.
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REGENXBIO Announces Completion of Enrollment in Cohort 2 and Additional Positive Interim Data in AFFINITY DUCHENNE® Trial
Sarepta Therapeutics Announces Positive Data for Duchenne Muscular Dystrophy Amenable to Skipping Exon 51
CureDuchenne Welcomes Patricia Brown as Senior Director of Community Engagement
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