Kicking for a cure

Leila Pozin stood along the sideline of six small soccer fields Sunday morning, watching children enjoy what began for her three years ago as a bat mitzvah project. While other girls were out volunteering at animal shelters, Leila, 15, of Corona del Mar, coordinated her own fundraiser in the form of a six-hour soccer tournament.

After learning that a neighborhood child had been diagnosed with Duchenne’s, an aggressive strand of muscular dystrophy, Leila and close friend Charolette Gadbois, 13, organized a day of 3-on-3 soccer games at Sage Hills High School. Between 9 a.m. and 3 p.m. Sunday the field filled with enthusiastic kids and parents playing soccer to raise money for CureDuchenne, a charity devoted to finding a cure for the disease.

“We wanted to make a difference,” Leila said. “We went to Paul [Miller] and asked him how.”

Miller and his wife, Debra, whose son was diagnosed with the disease in 2001, were delighted. Although the treatments are lacking, the couple has hopes for their son, who is now 10 and still in good spirits.

“We said early on he is part of the solution [to this problem] whether it saves him or not,” Miller said.

It is an emotional subject for the family, but they have chosen to approach it as logically as possible, selling it to the world as if the cure were a product. For this father, the cure is a product in the sense that he needs to sell donors on the idea that investing in the research is worth their funding.

This is an “orphan” disease, said CureDuchenne founder Paul Miller. “Pharmaceutical companies do not invest in bringing cures to market because the number of potential users does not make it profitable enough,” for that kind of risk.

Debra could not attend the event as she was searching out new research projects for the money to go toward in Boston.

Nearly 90 people attended the event Sunday, which Miller hopes will raise even more than the $10,000 accumulated last year.

That money was donated toward continuing research started by two high school students in Colorado. The results of their study are expected in June, Miller said.