The Clayco Foundation is committed to bringing about change and making a positive impact, and one of the key ways we want to make a difference is by raising awareness of rare diseases and the many challenges faced by the people and families they directly affect. We’re doing this by supporting Illumination, an organization that has a deep connection to my family. Founded by my son Shawn in the wake of our family’s loss of my late wife, Ellen, Illumination sets out to raise awareness of rare disease and also help find potential cures.
Leading the cure with a vision
Illumination’s mission is focused on raising funds to find a cure for Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL), a rare and fatal genetic condition that affected Ellen. One of the great ways Illumination achieves this is by organizing its famous light spectacular that invites emerging artists and performers to create powerful works of art and installations that focus on the use of light. In addition to showcasing local artists, this event raises funds that go directly to research efforts at The John Atkinson Research Lab at Washington University.
Illumination is also supporting the arts community by discovering, attracting, mentoring, and directing individuals committed to the Art of Light. These creative minds make this yearly event possible. Due to the pandemic, Illumination canceled their regularly planned event and named 2020 “The Year Without Light.” This didn’t mean passing an opportunity to commit to the cause; in place of the original event, artists, designers, and performers created an original short film to bring a little magic and color to the viewer’s screen.
Optimism for the future
One of the things I have learned is that we cannot change past circumstances and events in our lives that we have little control over. What we do have the power to change is the present as well as the future. I’m hopeful that this initiative will continue to make a large impact and find a cure for RVCL while also uplifting future patients and their loved ones whose lives have been forever changed by this rare disease.