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Rare disease council in Minnesota partly inspired by Winona boy

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A Winona boy, who died of a rare illness when he was 5 years old, has been cited as an inspiration for a new study group formed in Minnesota.

Gavin Quimby was celebrated as ‘Super Gav’ in 2014, when the city of Winona gave him a day to perform as a superhero in public.

A bill to create a ‘rare disease advisory council’ for Minnesota was signed Tuesday in St. Paul by Governor Tim Walz, who said creating the council is “the right thing to do.”

State Senate president Jeremy Miller of Winona sponsored the bill.

Miller said the council should help medical experts find faster ways to diagnose rare diseases and methods of curing those illnesses.

The council itself will be named after Chloe Barnes, who died of a nervous system illness when she was 2 years old.

The National Institutes of Health define a disease as ‘rare’ if fewer than 200,000 Americans have it.

A native of Prairie du Chien, Brad graduated from UW - La Crosse and has worked in radio news for more than 30 years, mostly in the La Crosse area. He regularly covers local courts and city and county government. Brad produces the features "Yesterday in La Crosse" and "What's Buried on Brad's Desk." He also writes the website "Triviazoids," which finds odd connections between events that happen on a certain date, and he writes and performs with the local comedy group Heart of La Crosse. Brad been featured on several national TV programs because of his memory skills.

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