Special Hope Foundation Grantee Profile
Once a month, the Special Hope Foundation highlights the work of one of our grantees, and the ways in which they promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.
This past September, we awarded a grant to a very special organization, Positive Exposure. We first learned about Positive Exposure when we met it’s founder, Rick Guidotti, at the AADMD Conference in Princeton last year, where he was a keynote speaker.
About Positive Exposure
Positive Exposure was founded in 1998 by award winning fashion photographer, Rick Guidotti, who worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people.
But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.
So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure.
Positive Exposure’s Mission
Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism. Their educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated. Positive Exposure’s Frame program is an extension of their work, and provides education for the medical community.
FRAME is a web-based educational library and resource created by Positive Exposure that changes how medical information is presented to health care professionals in training, clinicians, families and communities.
FRAME utilizes brief educational films hosted on the Positive Exposure and partner websites. What started as a pilot in collaboration with students in the Joan H Marks Graduate Program in Human Genetics Sarah Lawrence College with five genetic conditions – and formerly entitled The New Face of Genetics – FRAME is growing into an important compendium of genetic conditions that will change the way students in health care field see and experience individuals living with genetic differences.
Each brief film will give future genetic counselors, nurses and physicians a more robust understanding of rare genetic conditions, while modeling an attitude of respect for the humanity of patients. Viewers will get to see participants talk, move, and smile, a departure from the “patient-as-a-specimen” model that most educational medical literature utilizes. FRAME presents individuals living with specific genetic conditions in a manner, which captures their humanity and beauty.
In each film, participants connect differently with the audience as they introduce themselves to viewers and then demonstrate hallmark characteristics of their condition, not in a clinical, but in a “ natural, real life” manner. This provides each visitor to the site, the opportunity to study and fully understand a genetic condition on a real, dynamic person, bringing a new perspective to medical education and the learning process. The script for each segment of the film will reflect the most current information on each condition as well as input from our team of well-regarded geneticists, specialists, families and support groups.
The goal is that, once completed, each segment will be used by health care providers in training and professionals as a tool to learn, understand and experience the distinct characteristics of the specific genetic condition. It will be an important teaching and learning tool that highlights humanity alongside key medical information. Additionally, FRAME can be utilized by families, therapists, educators, communities as well as a tool for transition medicine as an increasing number of young adults living with genetic conditions now enter into the adult health care system.