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Rare disease council in Minnesota partly inspired by Winona boy

Brad Williams

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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.

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