Project Sebastian to celebrate Batten Disease Awareness in June

Sebastian Velona, 17, shows off his shirt for the nonprofit Project Sebastian that is working to educate the public about Batten disease to help find a cure. Courtesy
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Project Sebastian, a local nonprofit that helps promote research to cures for rare diseases, is celebrating Batten Disease Advocacy and Awareness through the month of June with a number of fundraisers. 

Batten disease is a rare and fatal genetic disease that affects 2-4 of every 100,000 live births in the U.S., causing seizures, blindness and cognitive decline, among others. 

Batten disease is terminal and claims the lives of most children and teens who are diagnosed with it — something Project Sebastian is dedicated to changing. 

Donations to the nonprofit go directly to helping children with the disease in their daily struggles, as well as funding research for a potential cure for Batten, along with other rare diseases. 

A Cup for the Cure 

First up, Project Sebastian is partnering with Blue Line Roasting to host a coffee fundraiser this weekend. 

Half of the proceeds from all sales, from coffee to mugs, during the weekend are set to benefit Project Sebastian. 

A Cup for the Cure is scheduled to run Friday through Sunday. To participate, visit bluelineroasting.com. When making a purchase, write #TeamSebi, #BattenDiseaseAwareness and #CupForTheCure in the checkout. 

Color Me Mine 

The following weekend, Project Sebastian is partnering with Color Me Mine for an in-store fundraising event. 

The store is set to donate 15% of total stores gross to Project Sebastian to support Batten disease awareness, with all donations tax-deductible.  

Raffle tickets, sponsored by Facialology & Make up by Jess, are also available for a chance to win makeup and a facial. 

The Color Me Mine fundraiser is scheduled June 11-13 at the store’s Westfield Valencia Town Center location, 24300 Town Center Drive, Suite 106. The store is open 11 a.m. to 8 p.m. Friday and Saturday and 11 a.m. to 6 p.m. Sunday.  

For more information on Project Sebastian, visit projectsebastian.org. 

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