Long Beach event raises awareness for neurofibromatosis
The Children's Tumor Foundation hoped to educate and unite the community in the fight against what organizers call 'the most common rare disease you've never heard of.'
Families, friends, and businesses filled Shoreline Aquatic Park this weekend for the Southern California "Shine a Light Walk." The event, hosted by the Children's Tumor Foundation, was held in hopes of educating and uniting the community in the fight against what organizers call “the most common rare disease you've never heard of.” Their mission is to raise awareness and funds for neurofibromatosis, also known as NF.
NF is a group of genetic conditions that cause tumors to grow on nerves throughout the body. Saturday’s event, hosted by the Children’s Tumor Foundation, was part of a nationwide effort held in 24 cities across the United States.
Development manager Lauren Johnston said that while there is no cure, the nonprofit has made significant strides in funding research and improving the lives of those living with the disease.
“We got our second drug approved in February of this year, and it’s the first one ever for adults. All the other drugs have been for children,” Johnston said. “A mom was like, ‘My kid is turning 18, and now I have hope.’”
For parents like Denise Torres, that hope means the possibility of a bright future for her daughter. When her daughter was just four months old, a pediatrician noticed unusual birthmarks and ordered tests.
“I was absolutely shocked," Torres said. "I’d never heard of it. There wasn’t a lot of information. I got a pamphlet at that first appointment from the first neurologist. It felt very overwhelming.”
Torres credits Dr. Tena Rosser and organizations like the Children’s Tumor Foundation for giving her both hope and community. Her daughter, who turns 13 in October, has endured seizures, learning disabilities, migraines and regular MRIs. Despite the challenges, Torres said her daughter’s spirit inspires her every day.
“She is my complete hero,” Torres said. “She deals with pain and tough days with a smile. She doesn’t have to — but she does.”
Rosser, a pediatric neurologist at Children’s Hospital Los Angeles, runs the NF clinic and has received the Children’s Humanitarian Award for her work. She said symptoms of NF can range from subtle skin spots to severe complications, sometimes going unnoticed until adulthood.
“A lot of people, because they’re very healthy, they have some spots on their skin, and they’ve never really thought about it. Or their providers didn’t bring it to their attention," Rosser says. Because the disease doesn’t present any obvious symptoms to parents, it is often not diagnosed until their child tests positive.
Rosser added that while about half of patients with NF lead healthy lives, more severe cases can result in spinal curvature, bone deformities and tumors affecting vital organs.
Although a cure remains out of reach, advocates point to growing momentum. With new treatments available for children and the FDA’s first adult drug approval in February, the Children’s Tumor Foundation says progress is accelerating.
Families living with NF say events like the “Shine a Light Walk” create community and offer hope for the future.
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