12 Apr Supporting Sebastian
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 vegetative state and likely die in his twenties.
In April 2016, Sebi’s family learned about promising results in trials using gene replacement therapy to treat genetic disorders. The therapy replaces mutated genes with new genes delivered to the brain. In one trial, scientists used gene therapy to treat Batten CLN6 – a disorder similar to CLN8.
Upon learning this news, Sebi’s family approached the scientists and asked if gene therapy could be used to treat CLN8. Fortunately, the scientists said it could be done. Unfortunately, they said it would cost $3.5 million for research, development and approvals.
Without hesitation, Sebi’s family established the Sebastian Velona Foundation to cure CLN8. Currently, it is raising money to fund gene replacement research and therapy. And, in just a few short months, the Foundation has garnered media coverage from local publications to ESPN, the PGA Tour and NBC’s The Golf Channel.
For some children, the hope of CLN8 gene therapy comes too late. In Sebi’s case, he’s in a race against time. If he doesn’t receive the therapy in a year, his condition will deteriorate too far, and he won’t be a candidate for the therapy. This urgency is driving the Foundation to raise the money necessary to give Sebi, and others like him, a fighting chance at beating CLN8. Teri Fox is determined to do whatever it takes: “I don’t how we’ll raise the money, but failure is not an option. I can’t lose my son.”
The Foundation needs your help. It is hosting a Wine Gala at the Tournament Player’s Club in Valencia on April 28, 2017, from 6 to 11 p.m. The gala will feature wine tasting, hors d’ouevres, a taco bar, live music, dancing, auctions and local businesses offering a variety of products and services. Proceeds will benefit the Foundation and support gene therapy research.
The Foundation is a project of The Gi ving Back Fund, a 501(c)(3) charity. To learn more, visit www.CureBattenCLN8.org. For gala tickets, visit www.SavingSebi.org. And, you can follow the Foundation on Facebook.com/HealingHugs4Sebi, Twitter.com/ CureBattenCLN8 and Instagram.com/SebastianVelona.
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