In 2009, when Lili Rachel Smith died unexpectedly at age 15 from complications of Apert syndrome  — a rare, cranial-facial condition she had lived with since birth — her parents, friends and classmates were understandably devastated. But her mother, Laura Talmus, hadn’t realized how many people Lili touched until they started reaching out to her.

“Her friends just kept coming to me and saying, ‘What can I do?’ ” recalled Talmus, a Kentfield resident and the Western regional director for American Jewish World Service.

Despite her physical disabilities, Lili had a huge spirit — and many friends, including President Bill Clinton, who befriended the teen when her father, Averell “Ace” Smith, ran Hillary Rodham Clinton’s 2008 presidential campaign in California.

But despite her outgoing personality, as she got older, Lili struggled with social isolation because of the toll the syndrome took on her appearance.

Laura Talmus

Beyond Differences, a 2-year-old Greenbrae-based nonprofit created in Lily’s memory, seeks to educate kids and teens about the realities of social isolation, and what can be done to overcome it. The organization’s annual fundraiser and barbecue will take place from 10:30 a.m. to 2 p.m. Saturday, April 21 at the Mill Valley Community Center.

One of the most important aspects of the organization is that it’s led by youth, said Talmus. “Kids listen to other kids,” she explained.

A teen board of 16 kids, from seventh grade through high school, are responsible for the bulk of the organization’s programming, including assemblies on social isolation they design and lead at area middle schools. About half of the teen board members are Jewish.

“I knew Lili, and once I really heard her story, I think there were so many of us that wanted to do something in her honor,” said Jenna Zimmerman, a 17-year-old junior at the Jewish Community High School of the Bay in San Francisco.

Zimmerman has been involved in Beyond Differences from its beginnings in spring 2010. She was recently nominated for a Diller Teen Tikkun Olam award by an educator at her school, in part because of her work with the group.

“The idea with the assemblies is that we’re hopefully planting a seed with some students,” Zimmerman said. “If the next day, a student walks down the hall with the intention to say ‘Hi’ to some new people, or to sit with someone different at lunch, or to smile at someone who looks down … some percentage of those kids are going to have a great outcome that lasts past the next day.”

Talmus said she sees the “student-led social movement” growing every year, and she hopes to make the topic of social isolation a national conversation.

“We know that my daughter suffered because she had facial differences … but this issue is really universal,” Talmus said. “There are kids who maybe have learning differences, or who are questioning their gender identity. And sometimes it’s the kids who you think would be popular. You can never imagine what someone else is going through.”

For more information on Beyond Differences, visit www.beyonddifferences.org or call (415) 256-9095.