19 Apr A Fun Way to “Save Sebi” on Saturday, May 13

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 Afterburn Fitness in Valencia. It will feature fitness challenges, vendors, food trucks, a beer garden, music, entertainment, a kids zone and more. Local favorite Wolf Creek Brewery will be pouring beer and wine. The festival is open to the public and admission is free. However, there are fees to participate in challenges. Proceeds benefit the Foundation. For information and to register for challenges, visit www.healinghugsfestival.com. There are many ways to follow and support Sebastian during this time.

For information, visit www.curebattencln8.org. Follow the family at www.facebook.com/healinghugs4sebi, www.twitter.com/curebattencln8 and www.instagram.com/sebastianvelona.

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