A few months back my sister-in-law emailed me to tell me about a conversation she had with her childhood friend, Valerie. who was starting a foundation. In 2011, Valerie received some extremely sad news that her then, seemingly healthy 5-year-old son was in fact, not healthy and was diagnosed with Duchenne Muscular Dystrophy.  What began with sore leg muscles was in fact a disease that is the most common fatal, genetic childhood disorder, which affects approximately one out of 3500 boys each year and has no cure.

Valerie and her husband Jorge were told that most Duchenne boys are diagnosed between the ages of 3 and 5 and are in a wheelchair between 10-12 years old. The disease is associated with respiratory failure, heart failure, and debilitating orthopedic complications. Up until just few years ago – upon a diagnosis of Duchenne, neurologists offered no hope for the families and told them just go home and love their boys as long as possible. Most Duchenne boys die in their late teens and twenties. The worst of all there has never been a survivor.

However, after grieving and processing this incredible news  The Llauro Family decided to get to work in search of a cure. After learning about some breakthrough treatment drugs that are being developed which may be available soon, they decided to create the WalkingStrong Foundation to dramatically increase Duchenne awareness and support scientists in funding their research.

They said, “We are determined and hopeful that our son, Alexander, continues WALKING STRONG.  We founded Walking Strong to solidify our determination and commitment in making our son and other Duchenne boys – the first ever survivors. Duchenne parents are living on a time clock. As most parents make plans and look forward to their children’s future, Duchenne parents, fear the future. We fear what lies ahead for our boys. The time is now, for breakthrough treatments for these boys