22 Mar The Saving Sebi Wine Gala is Friday, April 28
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 evening includes live music, hors d’oeuvres and an auction that promises to impress. For an unforgettable evening, a VIP table is available for $5,000. This VIP experience accommodates 10 people and includes full table service of premium wine paired with a four-course meal.Individual tickets to the gala can be purchased at www.savingsebi.org in advance for $100. Tickets may be purchased at the door for $125, however, space is limited and the event is expected to sell out. Per the TPC Valencia dress code, cocktail attire is required.
Sebastian Velona suffers from Batten CLN8, a rare neurological disorder that is expected to take his life before he reaches adulthood. At only 13 years old, Sebastian has already lost most of his vision and his ability to walk and speak is declining. Without successful treatment, within the next 24 months Sebastian will become unable to eat, talk or move on his own and he faces a future with increasingly severe seizures and health complications.
Sebastian Velona’s team of leading doctors and scientists from across the US have worked together and developed a gene therapy to hopefully stop the progression of Batten CLN8 and save Sebi’s life, but as any rare disease with a new treatment, it is not yet covered by insurance and the costs are astronomical. Sebi’s time is running out and he needs your help. Please join us for the Saving Sebi Wine Gala and help save Sebi’s life.
Ready to Do your Part?
Please donate now; this sweet SCV kiddo doesn’t have a moment to lose. Learn more and give your gift at the link. www.curebattencln8.org