Dr. Matt Holder, the Global Medical Advisor for Special Olympics International and President of the American Academy of Developmental Medicine and Dentistry has written that adults living with neurodevelopmental disorders and intellectual disability are the most underserved community he has ever encountered. In fact, for those living with Down syndrome, there are only about 30 states that have clinics that specialize in their care, and most are pediatric clinics concentrated in the eastern half of the United States. There are few resources for adults.
While pediatric care has come a long way over the last several years, most medical students still have little or no exposure to the needs of individuals living with genetic intellectual disabilities. When they do, the clinical features of their disability are discussed with little or no consideration for the humanity of those living with the disability.
Rick Guidotti, an award-winning former New York fashion photographer had his life changed by this awareness. When he saw a young woman with albinism waiting at a bus stop in New York he was struck by how beautiful she was and went home to learn more about her genetic condition. Looking online what he found was startling and upsetting, and the images sad and dehumanizing. The photographs he saw showed the disease or diagnosis at the expense of the person's humanity.
Rick stopped working for the fashion industry and founded an organization called Positive Exposure to empower people living with genetic differences, and to educate the world around them. Rick has used his incredible artistry to create a world of beauty to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism.
The Jerome Lejeune Foundation is proud to have partnered with Rick and Positive Exposure to fund the production of a video on Down syndrome as part of their "Faces Redefining the Art of Medical Education," or FRAME project. FRAME videos are intended to "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."
The goal is that each video in the series will be used by health care providers in training and by professionals as a tool to learn, understand and experience the distinct characteristics of, in our case, Down syndrome. It will also be a valuable resource to share with families who have received a prenatal diagnosis of Down syndrome. Rick Guidotti and Positive Exposure's work is known for highlighting the humanity of indivdiuals while at the same time providing key medical information.
Our hope is that this video will be utilized by families, therapists, educators, and communities 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.
Positive Exposure has released the finished version of this beautiful video, so we invite you to enjoy it, and share it as broadly as possible.