The Sebastian Velona Foundation to cure CLN8 Thirteen-year old Sebastian Velona is a Santa Clarita resident. When he was four, he suffered his first seizure. By six, his eyesight began failing. Shortly after, his motor skills and cognitive abilities began declining. By eight, doctors diagnosed him with Batten Disease CLN8 – a degenerative and fatal neurological disorder. Without help, Sebastian will deteriorate to a vegetative state and likely die in...
Sebastian "Sebi" Velona suffers from Batten Disease CLN8, a fatal and degenerative neurological disorder characterized by seizures, blindness, cognitive decline and loss of motor function. Without a cure, he will likely die in his 20s. The Sebastian Velona Foundation was established to cure CLN8. Currently, it is funding gene replacement research that has shown promise treating genetic disorders. On May 13, the Foundation will host the #HealingHugs Festival for a Cure at...
TPC Wine Gala on April 28 to benefit young resident Thirteen-year old Sebastian Velona, affectionately known as Sebi, is a Santa Clarita resident. When he was four, he suffered his first seizure. By six, his eyesight began failing. Shortly after, his motor skills and cognitive abilities began declining. By eight, doctors diagnosed him with Batten Disease CLN8 – a degenerative and fatal neurological disorder. Without help, Sebi will deteriorate to a...
Marq Torien and the Bulletboys have donated two VIP experience packages to be auctioned on CharityBuzz.com to support the fundraising campaign for 13-year old Sebastian Velona, affectionately known as Sebi, who suffers from a fatal disease. He’s fighting for his life and needs to raise $3.5 million to fund gene replacement research and therapy. Doctors diagnosed Sebi with Batten Disease CLN8 - a degenerative and fatal neurological disorder. He suffers from...
Jason and Megan Gore raise money to save Sebastian Velona who is fighting for his life with Batten disease. Jason and Megan Gore raise money to save a child's life ...
Saving Sebi Wine Gala to be Held at TPC Valencia The Sebastian Velona Foundation is hosting the Saving Sebi Wine Gala to help raise funds for Sebastian's gene therapy treatment for Batten Disease CLN8. The event will be held at TPC Valencia on Friday, April 28 from 6pm to 11pm.The Saving Sebi Wine Gala will feature a variety of wines from a number of top wineries in the area. The...
When Sebastian was 4, he had his first seizure. At age 6, he started losing his vision. After DNA testing, we finally had a definitive answer: Batten CLN8. Receiving the news that your child has a fatal neurological disorder is devastating. We need $3.5 million to keep our child alive. We are raising money for the research, development and application of gene replacement therapy to treat Batten CLN8. Our hope...
PACIFIC PALISADES, Calif. -- Sebastian Velona didn't just meet dozens of the world's best professional golfers at Riviera Country Club this past week. He hugged them. All of 'em. The 13-year-old hugged Jordan Spieth. He hugged Bubba Watson. He hugged Dustin Johnson, right before Johnson went on to win the Genesis Open and become the No. 1-ranked player in the world. One by one, Sebastian would meet each player, hold his...
By Bob Buttitta Teri Fox has two choices, raise the $3.5 million for the gene therapy treatment her 13-year-old son Sebastian needs to save his life or watch her son die. Sebastian suffers from Batten Disease CLN8, a genetic disease that causes seizures, blindness, cognitive and physical impairment and is ultimately fatal at a young age, usually before 20. The good news is that geneticists have agreed to take on Sebastian for a...
On July 18, 2003, Sebastian Velona entered the world in Valencia, Calif. in a perfect way, as a perfect baby. His mother Teri Fox could not have hoped for anything more. In his early years, “Sebi,” as he’s affectionately known, grew up in accordance with his birth that preceded those years, perfectly. “He was a perfectly normal kid,” said his step-father Michael Fox. “He played, baseball, video games and got along with...
