Zac Bartz was known for his infectious smile as well as his love of sports and the outdoors. He often attended fundraisers for his neurofibromatosis research fund, where he greeted people from his Chisago City hometown
Harv Bartz smiles when he talks about his grandson, Zac. “He had this unique way of connecting with people. He would reach out to anyone he thought needed a boost,” he says. “He was just an incredible kid.”
When he was 18 months old, Zac was diagnosed with neurofibromatosis (NF), a genetic disorder that predisposes people to tumors of the central nervous system and the peripheral nerves. He went through surgery, radiation, and numerous rounds of chemotherapy before he died in 2013 at age 11. Zac was known for his “never give up” outlook, Harv says. “That was his motto.”
The family has continued to live Zac’s words in supporting NF research. “Every Christmas, we would come up with a cause to give to, rather than exchange gifts,” says Greg Bartz, Harv’s son and Zac’s uncle. “I said if we’re going to champion a cause, let’s find one related to Zac’s condition.”
Greg sent his father on a mission to find NF researchers. Two of the names that came up: David Largaespada, Ph.D., in the U of M’s Masonic Cancer Center and Christopher Moertel, M.D., a pediatric hematologist/oncologist at M Health Fairview Masonic Children’s Hospital, who happened to be Zac’s doctor. “Some things just fall into place,” says Harv, who worked with the U of M Foundation to establish the Zachary NF Research Fund in 2010.
The family seeded the fund with proceeds from cookbook sales, spaghetti dinners, annual golf tournaments, and crowdfunding.
Harv and his wife Janet also made gifts that fit within their plans, including an IRA distribution, a charitable gift annuity, and a gift in their estate. “I felt like an annuity would provide some security,” Harv says. “It’s a way of making a donation without committing all of our assets.”
Greg and his wife, Sandy, also have made gifts to the fund and have included one in their estate plan.
Harv says his goal was to raise $1 million for Zac’s fund during his lifetime. Last year, the family’s efforts surpassed that.
Their work has allowed Largaespada’s team to analyze and catalog thousands of FDA-approved drugs and identify which combinations show promise for treating tumors. “Our funds are only a drop in the bucket for the millions that are needed, but they have used our funds to attract those millions,” Harv says.
What would Zac think of what his fund has done so far? According to his grandpa, “he would be flying high.”