Seventeen-year-old Megan Knofsky keeps alive her sibling's memory by sustaining a teen support group that raises money for research to find a cure for cystic fibrosis, the genetic disorder that affects 30,000 people and claimed her sister, Sarah, in 1997.
Two years ago, Knofsky of Irvine proved the Cystic Fibrosis Foundation's top fundraiser nationally. By writing to everyone she knew about her plan to compete in a Kona benefit marathon, Knofsky received pledges of $33,000.
"All in memory of my sister. It was an awesome thing," said Knofsky, whose parents, Carol and Myron, accompanied her to Hawaii for the event.
"She could have started high school and pushed this aside," said Helen M. Johnson, the foundation's California field management director in Anaheim. Instead, at virtually every foundation charity event in the area, Knofsky assembles a team of ready helpers drawn from Shooting Stars, the group she started in 1997 with her friends and those who knew her sister. "They're an amazing group of young people," Johnson said.
On March 21, Knofsky will share a bit of her passion and startup know-how in mitzvah making at the fourth annual Mitzvah Mania fair at Irvine's Tarbut V' Torah Community Day School. The Bureau of Jewish Education's free, communitywide event provides helpful advice for parents and their sixth-grade children, who plan a bar or bat mitzvah. Most rabbis expect a self-directed mitzvah project.
Last year, 150 families, most from 15 local synagogues, participated. Activities include a Mitzvot R Us exhibit of poster-board illustrated mitzvah projects. Some of the mitzvah makers will be on hand to personally describe their charitable projects and explain their displays.
Participants also will visit four, 20-minute workshops, where speakers such as Knofsky will give students a firsthand look at suggested charitable work. These include animal therapy and assisting disabled children in sports.
Knofsky did a food drive for her own project as a bat mitzvah at Santa Ana's Temple Beth Sholom. But she is more enthusiastic about Shooting Stars, so-named to "shoot for the cure." The group now has about 90 members that she contacts through an e-mail list.
"I'm lucky that my friends participate," said the Northwood High School senior and class president, who encourages participation in Cystic Fibrosis Foundation events by handing out brochures in class and at school clubs. She expects 20 to 30 Shooting Stars will collect pledges and walk as a team for Great Strides, a May 15 10-K walk in Huntington Beach.
"I'm very dedicated to the CF Foundation," Knofsky said, noting that life expectancy for those with the genetic disorder has increased from five to 33 years during her sister's brief, 12-year lifetime.
"We could have planted a tree, but that's not continuing," said Knofsky, born 22 months after her sibling. "I wanted her to still be a part of me."