CHARLOTTE, N.C. — Joey Chimento, 9, was diagnosed with neurofibromatosis when he was 1. There is no cure for the disease, which causes tumors to grow on nerves throughout the body, but he and his family are doing what they can to raise awareness.

What You Need To Know

  •  Neurofibromatosis is a group of genetic disorders that cause tumors to grow on nerves in the body 

  • Neurofibromatosis is one of the most common genetic conditions

  • There is no cure for neurofibromatosis 

  • Team Joey has raised more than $100,000 for neurofibromatosis research over eight years 

“It's not something that my husband or I had ever heard of. And to be completely honest, we were absolutely crushed because we knew that upon researching it, there was no cure and we knew that treatment was very limited,” said Erin Chimento, Joey’s mom.

Joey has a tumor in his brain and several inoperable tumors in his body. He has gone through several rounds of chemotherapy in the past, but despite his condition, Joey loves to stay active.

“I like to play baseball and play catch with the football with my dad,” Joey said.

Since his diagnosis, Joey’s family has been able to find comfort in their Waxhaw community, navigating challenges the condition brings.

“For our family, it's great to know that we're not alone and there are other people out there who are fighting to find a cure and better treatments to help the NF community for the future,” Erin Chimento said.

Joey and his family joined a walk Saturday hosted by the Children’s Tumor Foundation to raise money for a cure and to provide care for those with the disease. 

“This is the one thing we can control with this awful disorder is raising money so that we can have a better future for our son and all of those affected,” Erin Chimento said.

In the past eight years, the family has raised over $100,000. She hopes they can help get one step closer to a cure.

“We did not know what NF was and I understand that most people don't. But once people find out and spread the word, it's just more people accepting and more people understanding and it gets us closer to a cure,” she said. “It really does have a big impact on your family's mental health when you know that there's people in your corner.”

To learn more about the Children’s Tumor Foundation, visit the group's website.

To donate to Team Joey, visit here.