On Saturday, you can help raise money for the Children’s Tumor Foundation.
The ‘Shine a Light NF Walk’ helps to end a group of genetic conditions that impact millions worldwide and cause tumors to grow on their nerves throughout the body.
The event takes place on September 13 from 10 a.m. to 1 p.m. at Point Defiance Park’s Owen Beach Pavilion in Tacoma.
KIRO 7 spoke with the event organizer, Elizabeth Nilsson, about NF, which stands for neurofibromatosis.
“It’s a really big word that most people don’t know and have never heard. I was one of those until almost eight years ago,” she shared.
Her firstborn, Oskar, was diagnosed at two weeks old.
“At the time, we had no clue what it was, what it could mean, and I started Googling and I found CTF, the Children’s Tumor Foundation, and then it just so happened that about three months later, there was a Shine the Light Walk here in Washington.”
She went—and it changed everything for her.
“It gave us hope, and it gave me a place to not be quite so scared,” she told KIRO 7.
She now works with the organization to spread awareness.
There is currently no cure, but treatments focus on managing symptoms, including surgery, and research continues to develop new therapies.
NF can cause blindness, deafness, learning disabilities, bone abnormalities, and a 60% greater risk of cancer. It affects one in 2000 people.
“We found his first tumor at four, a hypothalamus brain tumor, and he spent two years on oral chemo, which was horrible. I mean, it’s not something you would wish on your worst enemy,” Nilsson shared with KIRO 7.
The Food and Drug Administration (FDA) approved the first treatment for NF two years before the tumor was discovered.
When given the option between this treatment and traditional chemo, she said it was an easy decision.
“I already knew all about Cellumentanib. I had already been raising awareness and helping gain funds because CTF was the leader in the funding behind the research study to get it through the FDA.”
She was amazed by the results.
“By six months, it had reduced almost 50%. And by the end of his two years on it, it had reduced 87%,” she told KIRO 7.
The medication is possible thanks to the hard work that she and others with CTF do—and the funding generated from events like the ‘Shine a Light NF Walk.’
If you’re interested in attending the event or donating to the cause, click here.
There will be music, crafts, games, snacks, face painting, balloon animals, a raffle/silent auction, and so much more.
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