Batten disease CLN8
Read more about the article A race for everyone: Project Sebastian hosts second annual Rare Warrior 5 x 5
Sebastian Velona crosses the finish line with the help of his personal trainer Andrew Basile and “Spiderman” after finishing the All Abilities Half K race during the Project Sebastian Rare Warrior 5 X 5 Challenge at Valencia Heritage Park on Saturday, May 20, 2023. Chris Torres/The Signal

A race for everyone: Project Sebastian hosts second annual Rare Warrior 5 x 5

Christopher Velona, founder of Project Sebastian, said his son Sebastian was diagnosed with epilepsy as a child, but then started losing his vision, along with his cognitive and physical abilities.…

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Read more about the article L.A. County recognizes June as Batten Disease Awareness Month
Los Angeles County Supervisor Kathryn Barger stands with Christopher Velona and his son Sebastian Velona as she recognizes Project Sebastian for its work battling Batten Disease Monday morning. June 07, 2021. Bobby Block / The Signal.

L.A. County recognizes June as Batten Disease Awareness Month

Los Angeles County Supervisor Kathryn Barger recognized June as Batten Disease Awareness Month, presenting Project Sebastian, a local nonprofit that helps promote research to find cures for rare diseases like…

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Read more about the article Local nonprofit Project Sebastian aims to eradicate Battens Disease
Sebastian Velona, 14, holds up a banner for the nonprofit Project Sebastian that is working to educate the public about Batten Disease and to help find a cure. Courtesy Photo

Local nonprofit Project Sebastian aims to eradicate Battens Disease

Fourteen-year-old Sebastian Velona is a positive high school student who loves to play the drums and practice karate.  He faces adversity head-on and tries to stay strong as fights his…

Continue ReadingLocal nonprofit Project Sebastian aims to eradicate Battens Disease
Read more about the article The healing power of hugs: Santa Clarita family begins foundation to treat son’s fatal disorder
Teri Hughes Fox, Michael Fox, Sebastian Velona (13) and Gage Velona (11). Courtesy Photo

The healing power of hugs: Santa Clarita family begins foundation to treat son’s fatal disorder

Thirteen year old Sebastian, or Sebi, Velona believes in the power of hugs.  The eighth grader at Rio Norte Junior High School believes that a big, strong hug can heal…

Continue ReadingThe healing power of hugs: Santa Clarita family begins foundation to treat son’s fatal disorder