When her 6-month-old daughter, Ava, was diagnosed with neurofibromatosis 1 (NF1) in 2009, Granite Bay resident Dawn Lowell read everything she could about the genetic disorder online. She learned that one in every 3,000 children is born with NF1, which causes tumors to grow on nerves throughout the body. Other symptoms include enlargement and deformation of bones, cancer, deafness, blindness, learning disabilities and debilitating pain.
“We were thrown into a world of genetics, specialists, MRIs, tumors, NF clinics, ophthalmology, you name it,” Lowell recalls. “I was so confused in the beginning and didn’t understand what was going on.”
Tired of waiting for test results and calls from doctors, she turned to the Children’s Tumor Foundation (CTF), which came up often during her research. Founded in 1978, the non-profit medical foundation works toward the development of clinical centers and treatments for neurofibromatosis (NF), including NF2 and schwannomatosis. Its Endurance Team invites participants to run, walk, bike or swim in events worldwide to raise funds and awareness for those affected by NF. The same year Ava was diagnosed, Lowell ran her first half marathon in support of CTF and found a new family in the process.
“The emotional support I received and the knowledge I gained from a lot of different folks opened up a whole new door for me,” she shares. “It was in the midst of all of this [that] my daughter’s first tumor was found…a serious tumor wrapped around her C1 and C2 nerves in her upper spinal cord.”
In addition to hosting fund-raisers with her husband, Andrew, Lowell serves as a CTF volunteer event chair and runs alongside a team of supporters as part of the NF Endurance Team—known as “Ava’s Angels”—in races like the California International Marathon, where they raised nearly $40,000 on behalf of CTF last year.

Debby Bedwell has been a member of Ava’s Angels for more than four years and helps build awareness for CTF by coordinating and organizing many of the fund-raising events. She says she’s touched by Lowell’s “positive spirit, determination and commitment” to helping her daughter, now 6. “I totally understood Dawn’s motivation once I met little Ava,” Bedwell explains. “[She’s] spunky, active, a little ball of fire. You would never know by looking at her that she has this debilitating disease.”

“Our volunteers have done a phenomenal job raising awareness of NF,” adds CTF Endurance and Kids Program Manager, Angela Earle. “Families who are affected with NF have come together and formed a camaraderie in the community.” Much like Lowell, Earle began running and participating in triathlons to honor her daughter, Kylie, who suffers from NF1 and underwent five eye surgeries to treat congenital glaucoma before eventually having her left eye removed.

For Ava, removing the tumors on her spinal cord will mean removing the nerves they’re attached to, a serious surgery that won’t be performed until doctors deem it absolutely necessary. “I still run sometimes with tears in my eyes,” Lowell says. “My favorite memory was when Ava put a medal around my neck one day, out of the blue, and told me, ‘My mommy runs to find me a medicine to feel better.’”

---

For more information, visit ctf.org.