Local couple give boost to autism research

By: JEFF FRANK - Staff Writer | Thursday, March 23, 2006 11:01 PM PST ∞

SABRE SPRINGS ---- When their 2-year-old son, Michael, was diagnosed as autistic 10 years ago, Juan and Sharon Leon found few resources available to families in their situation.

After years of struggling with the challenges of finding services to help them deal with day-to-day life, the Sabre Springs residents decided to do something to help. They created the National Foundation For Autism Research in December 2003, which provides grants to nonprofit groups doing research or providing treatment programs for children with autism.

They organized a Race for Autism last year in Balboa Park that raised $80,000, allowing them to give grants to six agencies, along with creating a fund to provide materials that teachers can use to improve autistic students' ability to learn.

The NFAR's second Race for Autism is Saturday. The event includes a competitive 5-kilometer run, a 5K walk and a mile Fun Walk. The run begins at 8:30 a.m. at Balboa Park, with the walks starting shortly afterward. A resource fair with 23 agencies serving families dealing with autism follows.

The Leons squeeze their foundation work around their regular schedules, which includes Juan's full-time job as a quality manager at Hewlett Packard and Sharon's time spent taking care of Michael, now 12, and their other son, Marco, 10. Michael attends a school for children with special needs in Scripps Ranch.

"With autism, there really are no answers, just a lot of questions," Juan Leon said. "Parents have to navigate options and experimental treatments at their own risk and their own cost. The dollars being raised and put into autism research are low compared to different conditions (such as) cancer, cystic fibrosis and Down syndrome."

More than 5,000 children with autism or related disorders live in San Diego, and as many as 1.77 million Americans are affected, according to figures provided by the Leons, who noted that the Centers for Disease Control and Prevention said autism is the fastest growing developmental disability in the United States.

"Only $35 million is raised for research for autism a year," Leon said. "That compares to muscular dystrophy raising $60 million in one weekend in their telethon and $100 million in a year. That's the reason for going out and starting a foundation. We just need to raise more money. Ideally, I'd like to see $50 to $100 million raised a year."

With the money raised last year, the foundation presented separate $10,000 grants to the Exceptional Family Resource Center, Kids Included Together, a San Diego State research study and the university's department of special education and autism program, TERI Inc. and the Vista Hills-Stein Education Center.

"The main thing for Juan and I is that it's really about the kids," Sharon Leon said. "We looked at ways we would be able to provide a benefit for children with autism. ... We want to get (material) out to train physicians to recognize warning signs so kids can get into treatment early."

Entry fee for the run costs $25 for adults and $12.50 for children 12 and under. The resource fair and a children's carnival afterward are free and open to the public. Call (858) 679-8800 or visit www.nfar.org.

Contact staff writer Jeff Frank at (760) 740-5419 or jfrank@nctimes.com.