Run scheduled to raise funds, awareness for rare diseases

Sebastian Velona, who has a rare fatal genetic disorder called Batten disease, will lead off the 5k and 5-mile runs to raise funds and awareness for rare diseases on May 7 at Valencia Heritage Park on Newhall Ranch Road. Photo courtesy of Christopher Velona
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A fun run is scheduled May 7 to raise funds and awareness for rare diseases. 

Valencia dad Christopher Velona founded and operates Project Sebastian. The foundation was his response to his son, Sebastian, being diagnosed at age 5 with a rare fatal genetic disorder called Batten disease after several years of doctors misdiagnosing him. Sebastian, now 18, is on a slow decline, Velona said, with no treatment and no cure in sight. 

“We set out to raise awareness and find a cure for Batten disease,” Velona told The Signal, “and we’ve been pretty successful raising awareness here, and we just thought that we could do more for the whole rare-disease community as a whole.” 

And so, Project Sebastian aims to be a hub for information, psychotherapy, support groups and resources for families suffering from any kind of rare disease. Velona said there are 7,000-plus rare diseases recorded in the world, which the National Institutes of Health says affect between 25 and 30 million Americans. Families, Velona added, are often scared, frustrated and upset with the fact that their doctors might not know anything about what their loved ones are going through. 

Project Sebastian is one way to help those suffering perhaps manage all those emotions. 

“And you give information out,” Velona said, “and you give your tips and tricks out, maybe a referral for a different specialist. It’s more like a support group that takes care of itself.” 

The May 7 run starts 8 a.m. at Valencia Heritage Park on Newhall Ranch Road and is the first for the foundation, according to Velona, but hopefully not the last. The cost to register for either a 5k race or 5-mile race is $45. Neither will be timed, and participants can run or walk. Velona added that anyone can come by and support and cheer on friends and family. 

“There’s going to be some vendors there,” Velona said, “we’re going to have coffee and bagels. (Rep.) Mike Garcia is going to come out and have a few words, because he and Sebastian are friends, and then Sebastian is going to start the race.” 

For more information about Project Sebastian and its services, go to Find run details, register to participate or even volunteer by clicking the “events” tab on the site and searching for “Rare Warrior 5×5.” 

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