By Michael Abeyta


ARVADA, Colo. (CBS4) – As far as galas go, one held on Saturday in Arvada was pretty typical. There was mingling, drinks and a silent auction, but the reason for the event is pretty extraordinary.

A gala held to raise funds for a cure to CLN3 Batten Disease and research. (credit: CBS)

Beth and Jon Fries are parents to five girls. The two oldest have CLN3 Batten disease. Because of the disease, the girls are losing their sight. They also have seizures, learning difficulties, and behavioral issues.

Fries family (credit: CBS)

Eventually they will no longer be able to walk or talk, and they will need a feeding tube.

CBS4 introduced you to the Fries family in April.

(credit: Fries family)

It was a hard diagnosis for any parent, but especially hard when Beth and Jon learned Batten is deadly because there is no treatment or cure.

“Their disease is fatal by the late teens to early 20s,” Beth said.

They threw the soirée Saturday night to raise money to search for a cure.

Beth and Jon Fries (credit: CBS)

“It’s very similar to if you think about cancer funding 20 or 30 years ago,” said Beth. “There wasn’t a whole lot, and families started getting together like this hosting fundraisers to throw money at cancer research and now cancer is very treatable.”

Approximately 300 people bought tickets to the event and bid on auction items. The Fries were hoping to raise $100,000, but suspect they may raise even more. They can definitely feel the love of their community.

“It’s absolutely incredible. I feel so supported and so loved,” Jon said.

LINKS: Rare Sisters | Beyond Batten Disease Foundation

Michael Abeyta

Comments