KAWS, Eddie Martinez, and Other Big Names Are Donating Art to Raise Money to Cure a Rare Childhood Disease
Art dealer Bridget Finn is planning a charity auction to fund research into her daughter's illness, STXBP1 Disorders.
In November 2021, art dealer Bridget Finn’s world changed forever when her daughter Florence, who will turn two on July 11, was diagnosed with a rare disease, STXBP1 Disorders. Finn, a partner at Reyes Finn gallery in Detroit, had no idea what to do—but she knew the art community would be able to help her navigate the uncertain waters.
In honor of Rare Disease Day, celebrated each year on February 28, Finn is announcing “Flourish: Art for the Future,” a charity art auction to be held in September to raise money to fund research into curing STXBP1 Disorders.
“My whole life swirls around contemporary art and the relationships that I’ve built in this field,” Finn told Artnet News. “There are so many ways in which the art world comes together to generate funds for really amazing causes. I feel there is this potential—if people are motivated, it could essentially result in a cure for this really unusual disease.”
The event has been spearheaded by husband-and-wife artists Sam Moyer and Eddie Martinez, and will include work by a still-growing list that includes KAWS, Jonas Wood, Jules de Balincourt, Hilary Pecis, Sayre Gomez, and Rashid Johnson.
“To be honest, I think everyone that they’ve asked has said yes, and kind of an unwavering yes,” Finn said.
The first inkling that something was wrong with Florence’s health came when she was nine months old and wasn’t able to sit up on her own. The eventual diagnosis, of a “catastrophic neurodevelopmental disorder,” comes with lifelong physical and intellectual disabilities—Florence may never learn to speak, or to walk.
“It’s really a failed protein in your brain,” Finn explained. “The protein that carries information and tells the rest of the body how to work, half of Florence’s don’t work.”
Finn and her husband, Sam Beaubien, are hopeful about the progress Florence has made through intensive therapy. She is almost crawling, and is babbling. She has yet to develop epilepsy, which affects 95 percents of STXBP1 patients.
“Florence has about eight therapies a week, and she works her butt off,” Finn said.
Discovered in 2008, STXBP1 still doesn’t have a proper name, instead identified only by the gene where the mutation is found. There are more than 6,000 known rare diseases, affecting 300 million people worldwide. STXBP1, which affects one in 30,000 people, is among the 95 percent of them that have no known treatments.
As Finn began researching her daughter’s illness, she soon realized that many rare diseases could prove curable if there were more resources for conducting research. She quickly got in touch with the STXBP1 Disorders Foundation, a 501(c)3 non-profit led by parents of children who carry the STXBP1 mutation.
“The foundation has made incredible advancements already—there is a repurposed drug in trial now,” Finn said. “When I was talking with the people on the board, I said, ‘What could happen with $10 million?’ The response was that $10 million… could accelerate treatment to the point of finding a cure.”
The hope is to eventually enlist 50 artists for the September auction, and to raise millions of dollars in support of the STXBP1 Disorders Foundation. Those who have already agreed to contribute work are making new pieces for the occasion.
“We can build this into something really special,” Finn said. “The art world can step up and help cure a rare disease.”
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