Our Story

We are Jen Portnoy and Rich Romero.  In March of 2007, we were crushed when our son, Javier, was diagnosed with Duchenne Muscular Dystrophy (DMD).  DMD is a fatal muscle wasting disease that steals a young boys mobility, typically between the ages of seven to eleven.  Life expectancy is late teens to early twenties.

We took for granted that Javier would have the world laid out before him, with only the normal wackiness of youth as his personal hindrance.  We all took that for granted the first time we saw him.  The infinite possibilities we imagined have given way to an intense hope;  a hope that science will catch up, a hope that Javier is here when it does.

Javier currently has no concept of the limitations that await him.  We are committed to stopping the disease before it stops Javier.