2024 connections conference portrait sign up

It’s time to share your story

What is the shine a light on usher syndrome exhibit?

Shine a Light on Usher Syndrome is one of the Usher Syndrome Society’s primary awareness initiatives designed to share the faces and stories of the Usher syndrome community. Over the last 8 years, the Usher Syndrome Society has worked with renowned photographers 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.

Add your portrait and story to the collection!

The Usher Syndrome Society will be photographing new portraits for the Shine a Light Exhibit at the 2024 USH Connections Conference happening July 19th-20th in Rochester, NY.

If you have Usher syndrome and would like to have your portrait taken for the Shine a Light on Usher Syndrome Portrait Exhibit, please sign up for a time slot and complete the registration questions.

If you are a parent of a child with Usher syndrome, please complete the registration questions with your child’s information (name, age, etc).

*Please note that Walk-ins may be possible, but we cannot guarantee availability!

Select a time on the calendar below to sign up!

Still need to register for the 2024 connections conference?

The USH Connections Conference is hosted by The Usher Syndrome Coalition and will be held on July 19th-20th in Rochester, NY. In addition to having your portrait taken for the Shine a Light on Usher Syndrome Exhibit, the USH Connections Conference is a great opportunity to hear the latest updates on developing treatments from leading USH researchers and meet the USH community.