In 2007, at age 3, Javier was diagnosed with Duchenne muscular dystrophy, an aggressive muscle wasting disease. The doctors said there was nothing that could be done.

We chose to fight.

We started out with hope and a few hundred dollars - the personal check that was our first official donation used to open the charity’s bank account.  We knew the work we were setting out to do, if successful, could help an entire community of children.  But to be honest, when writing that check, our intent and belief was that we could change the course of Javier’s life.  As it turns out, Javier’s journey hasn’t changed in the way we expected but he set us on a path, he inspired us and continues to inspire our work, and he’s been the catalyst for farther reaching results than we ever imagined possible.  

Over the past 15+ years, we promoted advocacy efforts and shined a light on the cumbersome, outdated regulatory process that hasn’t kept pace with incredible advancements in medicine. We have helped fund groundbreaking medical research. We’ve knocked down hurdles that get between patients and cutting edge care in the way of developing a pediatric neuromuscular center, the first in the tri-state area, right here in Stony Brook.

We started out with hope.