By Chris Torres
Signal Staff Writer
Christopher Velona, the director of Project Sebastian, said his son, Sebastian, was mis-diagnosed several times before he was officially told his son has CLN8, a rare form of Batten’s Disease.
According to the National Institute of Neurological Disorders and Stroke, Batten’s Disease in youth is fatal and has no known cure.
In an effort to look for answers and support for his son, Velona started Project Sebastian, a nonprofit organization designed to provide support and raise awareness for people suffering from rare diseases.
“I created [Project Sebastian] to save my son’s life,” Velona said.
Now, nearly a decade later and rallying with community support, Velona was able to host Project Sebastian’s first Rare Warrior 5 X 5 Fun Run event, in which around 100 people gathered at Valencia Heritage Park Saturday morning to race for the cause.
The Rare Warrior 5×5 consisted of two races. One was a 5k in which runners were guided through the San Francisquito Canyon trails, and the 5-mile run started at the park and led the participants up Copper Hill Drive, down the trail at the back side of the Paseo Club, and back up to Newhall Ranch Road to finish back at Valencia Heritage Park.
Velona said it was encouraging to see the amount of community support he received despite this being the first time he planned the event.
“I’m shocked as a first timer to hear so much support and happiness from everyone,” Velona said. “It just brought people together and I wanted that for Project Sebastian. I’m overwhelmed with joy.”
The run kicked off with guest speakers Rep. Mike Garcia, R-Santa Clarita, and Mayor Pro Tem Jason Gibbs, who both spoke about their support for the event and the foundation.
“All too often, folks with rare diseases don’t know where to turn to find the path forward,” said Garcia in a press release following the event. “I’m proud of the work Project Sebastian is doing to bring community support to those who are struggling. It is crucial that we support the people suffering from rare diseases, raise awareness for these conditions, and continue to fight for cures.”
The run was scheduled to happen two years ago, but the COVID-19 pandemic forced Velona to cancel the event. Although it was canceled, Velona said he was determined to follow through with the planning once they were allowed to do so.
“We had a 5k race planned two years ago, but it was canceled,” Velona said. “But I said I had to do it and I had to finish the idea because the goal was to continue to spread awareness for rare diseases.”
Runners who participated in the race were given race medals and complimentary shirts once they crossed the finish line.
Chad Mitchell, a Trinity Classical Academy high school student and volunteer for the race, said it felt fulfilling for him to volunteer at an event for a foundation such as Project Sebastian and take part in supporting the cause with the Santa Clarita Valley community.
“It feels wonderful to see the community involvement,” Mitchell said. “We should get everyone in the community to know about it so we can help to hopefully find a cure for Batten’s Disease.”