The Project Sebastian nonprofit organization dedicated to finding a cure for Batten Disease will hold a wine gala and silent auction fundraiser at Salt Creek Grille on Wednesday, Sept. 5 starting at 6:30 p.m.

During the event, doctors will speak about the debilitating neurological disease that targets children and is usually fatal before a victim reaches adulthood.

There is no cure for Batten Disease. However, recent developments in gene replacement therapy have shown promise.

“Project Sebastian was created to help my son Sebastian and other children have a chance at a full life,” said Chris Velona, whose son is now 15 and rapidly losing his ability to talk and walk as Batten Disease CLN8 degenerates his nervous system.

“Batten Disease destroys the body from the inside,” Velona said. “First, it masks itself as another disease, causing a misdiagnosis and loss of valuable time. This disease takes the eyesight, speech, cognitive abilities, causes seizures, the inability to walk, eat then puts you into a wheelchair with a feeding tube only to die a painful death. All before you can drive a car.

“In some cases like Sebastian’s, late-onset, data show us he will not live past 20 years of age,” Velona said. “So as you can read, the issue is time. This genetic illness waits for no one or any cure. It is relentless and will not stop until the child dies.”

Funds raised at the Salt Creek Grille event will help pay for a clinical trial of gene replacement therapy — replacing genes affected by Batten Disease with healthy genes.

“We hope that this current trial will change all this and gene therapy will eradicate this disease in the future,” Velona said. “My son and two other boys are involved in the trial but the cost is a staggering $3.5 million. With no insurance to cover it, we are fundraising as many times as possible.”

Salt Creek Grille Valencia has generously offered the patio for our event,” Velona said. “I have 120 tickets to sell at $100 apiece and hope to sell it out. Any and all monies go to continue funding this trial.”

Sponsorship Opportunities
Velona is seeking additional event sponsors.

All-In Sponsorship – $2,500 (1 available)
• Company name/logo on all event material
• Company name/logo on event website
• 4 free entries into the wine gala

Food or Beverage Sponsorship – $1,000 (2 Available)
• Company name/logo posted at all food/beverage tables.
• Company name/logo on event website
• 2 free entries into the event

Dessert Sponsorship- $750
• Company name at dessert table
• 1 free entry into the event

Gift Bag Sponsorship – $500 (1 available)
• 1 free entry into the event

“We are asking local business owners to donate any item that may generate high interest from our bidders to help make our event a success,” Velona said. “Your contribution will not only benefit Sebastian, but also many other children in this trial. They will have the opportunity for a full life.”

Potential sponsors and/or donors may call Velona directly at 661-414-4856.

Check out the Facebook event page for updates.

For more information, visit the Project Sebastian website.