USH2025 International symposium on usher syndrome
Join the Shine a Light Exhibit
What is the shine a light on usher syndrome exhibit?
The Shine a Light on Usher Syndrome Portrait Exhibit is one of the Usher Syndrome Society’s primary awareness initiatives to share the faces and stories of the Usher syndrome community. Over the last 9 years, the Usher Syndrome Society has worked with renowned photojournalist Genevieve deManio, Evan McGlinn, and Lauren Petracca to curate the largest collection of portraits documenting the individuals and families around the world living with this rare disease.
The Shine a Light exhibit is designed to travel the world and has been featured in universities, building lobbies, outdoor parks, museums, conference centers, and more. In May 2024, portraits from the Shine a Light collection were debuted across 9 Times Square billboards in New York City as part of the Usher Syndrome Society’s groundbreaking awareness campaign called Every Second Counts.
Select a time on the calendar below to sign up!
Add your portrait and story to the collection!
The Shine a Light on Usher Syndrome Exhibit is continuously growing and we are excited to share that we will be photographing at the USH2025 International Symposium on Usher Syndrome in the Netherlands.
If you or your family member has Usher syndrome or you are a researcher for Usher syndrome and would like to be photographed for the Shine a Light on Usher Syndrome Portrait Exhibit, please sign up for a time slot and complete the sign up questions.
If you are completing this form for your child, please fill out the form with your contact information and add your child’s name under “Additional Guests”.
*Please note that Walk-ins may be possible, but we cannot guarantee availability!
Portraits from the Usher Syndrome Society’s Shine A Light on Usher syndrome Exhibit featured on multiple billboards in Times Square, NYC.