The American Society of Human Genetics (ASHG) has named Rick Guidotti as the 2019 recipient of the Advocacy Award. Mr. Guidotti is the founder and director of POSITIVE EXPOSURE, described as "an innovative arts, advocacy, and education organization which utilizes the visual arts to celebrate human diversity, inclusivity of ethnicity, religion, gender, sexual orientation, age and ability."
This award honors individuals or groups who have exhibited excellence and achievement in applications of human genetics for the common good, in areas such as facilitating public awareness of genetics issues, promoting funding for biomedical research, and integrating genetics into health systems. ASHG will present the award, which will include a plaque and $10,000 prize, on Friday, October 18, during the organization's 69th Annual Meeting in Houston, Texas.
Mr. Guidotti started his career as a fashion photographer, and he shared his career transition story, which started in New York City. "One day in NYC, on a break from a photo shoot, I saw a stunning girl at a bus stop - a girl with pale skin and white hair, a girl with albinism. Upon returning home I began a process of discovery - about albinism, about people with genetic differences. What I found was startling and upsetting. The images that I saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people. So, I stopped working in the fashion industry and created the not-for-profit organization POSITIVE EXPOSURE." POSITIVE EXPOSURE uses visual arts to present the humanity and dignity of individuals living with genetic, physical, behavioral, and intellectual differences. The nonprofit celebrates the beauty and richness of human diversity.
"Mr. Guidotti's work has helped to demonstrate to the world that what we do as human geneticists is caring for and helping people; making lives better for all people - beautiful people," said Jannine Cody, PhD, Director of the Chromosome 18 Clinical Research Center, Department of Pediatrics, UT Health San Antonio, in her nomination letter.
Works of art by Mr. Guidotti have been exhibited in museums, galleries, educational institutions, hospitals and pubic spaces around the world. POSITIVE EXPOSURE was the focus of the 2014 award-winning documentary, On Beauty, by Kartemquin Films, which highlights the stories of several young people, their families, and communities as they learn to appreciate their differences. This film has been presented at conferences and encourages lively discussion on the intersection of genetics and disability.
Mr. Guidotti has presented at the ASHG High School Workshop for 11 years and through this engages students across the United States. One workshop attendee said, "I loved Mr. Guidotti's presentation because it gave me faith in humanity, and showed another way to see people with genetic disease, who are normal and part of our world."
Dr. Cody concludes her nomination letter by noting "Rick has spent his career promoting the science of human genetics by giving everyone new eyes with which to view our shared humanity."
Among his many honors, Mr. Guidotti was awarded the American Cleft Palette and Craniofacial Association & Craniofacial Foundation Leadership Award (2017), the Sturge-Weber Foundation Champion Award (2017), and the Eurordis Media Award, Rare Diseases Europe American Association on Intellectual and Developmental Disabilities (2014).