Bo Bigelow

Chairman of the Foundation for USP7 Related Diseases

Bo Bigelow is the chairman of the Foundation for USP7 Related Diseases ( He and his wife are the parents of two children, one of whom, Tess, has an ultra-rare genetic disorder. Bo has blazed new trails in advocating for people with undiagnosed diseases. Upon learning that Tess had a mutation in her USP7 gene, Bo and his wife believed that she was the only one of her kind in the world. But he wrote a blog post about Tess, took to social media, and within 24 hours discovered a team of researchers who were working on the USP7 gene and the disorder that Tess has. Tess was the eighth known patient in the world. Through his podcast and blog Stronger Every Day, since 2015 Bo has helped build their patient group to seventy cases worldwide. To find more patients, he made a short film called "Tess Is Not Alone: A USP7 Story." He and his wife started their foundation in 2017. Their mission is to cure USP7 related diseases. Bo is also a co-director of DISORDER: The Rare Disease Film Festival and is of counsel to Murray, Plumb and Murray in Portland, Maine. 

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