Editors note: The in-person event has been cancelled due to weather, and will be hosted virtually instead

The genetic conditions of neurofibromatosis (NF) and schwannomatosis (SWN) are not well known, but they affect about 4 million people worldwide, usually children.

The disease is often diagnosed during childhood. NF and SWN are a group of rare genetic conditions that cause the growth of tumors on nerve tissues. While the tumors are usually benign, they don’t always stay that way, and can cause complications like trouble with learning, heart and blood vessel conditions, vision loss, and pain.

Brighton resident Raymond Yu’s nephew was one such child, which is why he’s walking in this year’s Boston NF Walk at Castle Island from 10 a.m. to 1 p.m. on Saturday, September 26, put on by the Children’s Tumor Foundation – https://gvimes.link/bosnf

“This will be the second time I’ll be attending,” he said.

Yu said Theo is technically a “first cousin once removed,” but Yu has really been an uncle to his cousin’s child.

“Theo is turning four in a couple of months and was diagnosed in 2022 a year after he was born,” he said. “When my cousin told me about Theo’s diagnosis and when she learned about it for the first time – we both hadn’t heard about it at the time – so just hearing her story and how it’s affected her and Theo so far is how I got an awareness of NF. And last year was the first time in at least a few years they brought the walk back to Boston.”

Yu said it was a great experience and really helped the family help Theo.

“Last year they had it at Jamaica Pond,” he said. “It was really nice to see not just my direct family and friends attend, but also other families with children or adults affected by NF. It was a very well organized and lively event. They had activities for the kids, and some vendors that are researching therapies for NF, and it was nice to be able to interact with other friends and families who were attending and the vendors. And of course they had freebies and whatnot.”

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Yu said the diagnosis was not immediate.

“My cousin noticed that there were cafe-au-lait spots on his skin, so like birth marks and whatnot,” he said. “I have one myself, and I think they’re typically harmless and one doesn’t really think much of it. But my cousin did notice he had more than usual, so out of an abundance of caution, she asked Theo’s doctor about it, they did some tests and they officially diagnosed Theo with NF.”

Yu said it’s been stressful for the family, but Theo is growing up without any severe complications from the disease.

“Thankfully, knock on wood, fingers crossed, Theo doesn’t currently have those physical or viable symptoms, but there are NF people who might show signs of that,” he said. “Right now, and I hate to use this word, but Theo looks like a normal kid. But my cousin and her husband go through a lot of appointments and tests just to stay on top of how NF is developing in Theo, since it shows up very differently in different people.”

For more information on the disease and the walk, go to https://www.ctf.org