An extended family bands together to support the U’s neurofibromatosis research
By Robyn White
Nine-year-old Zachary “Zak” Bartz isn’t your typical second-grader — to many, he’s an inspiration.
Zak has a disorder called neurofibromatosis type 1 (NF1), which has caused tumors to grow in his brain and for which there is no known cure. Zak has endured multiple surgeries, countless rounds of chemotherapy, and 30 radiation treatments — all conducted at clinics associated with the Masonic Cancer Center, University of Minnesota.
Although the treatments are difficult, Zak doesn’t let NF1 get him down, says his grandpa Harvey Bartz. Zak still finds the time and energy to “coach” his 13-year-old brother’s hockey team. “He goes into the locker room and gives them a pep talk,” says Bartz. “He gets them all psyched up.”
Seeking a cure and grateful for Zak’s care at the University, Bartz in 2009 contacted the Minnesota Medical Foundation to find out how he could speed up NF1 research. After talking with MMF, he decided to create the Zachary Neurofibromatosis Research Fund at the University.
“What I really wanted was to find someplace where every dollar I raised would go to research,” says Bartz.
Bartz and his wife, Janet, along with Zak’s other grandparents, Dave and Darlene Rudolph, contributed initial gifts to establish the fund. Both sets of grandparents and other family members — Zak’s parents, Carol Ann and Nathan Bartz, Zak’s aunt Sandy Bartz, and many others — have contributed to the fund through various marketing efforts, fundraisers, and direct donations. To date, the fund has raised nearly $82,000.
Advancing NF research
The University is home to a clinic for NF1 patients and to two nationally known experts in NF — pediatric hematologist-oncologist Christopher Moertel, M.D., and cancer geneticist David Largaespada, Ph.D. Together Moertel and Largaespada lead the Minnesota Neurofibromatosis Clinic Without Walls, which provides care to NF patients from infancy through adulthood and maintains strong ties to research in the field.
Currently, they are working on three research projects studying NF1-related cancer. NF1 is one of two types of NF. The disorder is not a type of cancer, but it can cause cancer.
“The patient experience and laboratory experiments merge at the University of Minnesota so that we can learn more about NF1 and how to improve treatment in patients like Zachary,” says Moertel, who is Zak’s doctor.
Largaespada is identifying gene pathways related to NF1 cancers and testing new drug combinations in mouse models of these cancers. He hopes to soon move into a clinical trial with patients, working with Moertel.
Zak and Harvey Bartz recently visited Largaespada’s lab to see how the research was taking shape. “It was very illuminating for us to know that we were making a direct difference,” says Bartz.
Zak’s visit made an impression on the researchers, too, says Largaespada. “It really drove home that what we’re doing could have an impact on people’s lives.”
To support the University’s NF research, contact Kathy Beenen at 612-625-6495 or give to the Zachary Neurofibromatosis Research Fund at www.mmf.umn.edu/giveto/zachary.
To become part of our Partners in Care program, contact Jen Foss at 612-626-5276 or firstname.lastname@example.org.