2026 connections conference portrait sign up
Join the Shine a Light on Usher syndrome Portrait Exhibit
The Shine a Light on Usher Syndrome Exhibit is the largest collection of photographs and stories from people around the world living with Usher syndrome, designed to bring public awareness and greater understanding to this rare disease.
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 to share the faces and stories of the Usher syndrome community. Over the last decade, the USH Society has worked with renowned photojournalists, Evan McGlinn, Genevieve deManio, and Lauren Petracca to curate the largest collection of portraits documenting the individuals and families around the world living with this rare disease.
This exhibit is designed to travel the world and has been featured in universities, building lobbies, outdoor parks, museums, conference centers, and more. For the past two years, we have also displayed this exhibit across multiple Times Square billboards in NYC as part of our groundbreaking awareness campaign, Every Second Counts.
We are excited to share that we will be taking portraits at the Usher Syndrome Coalition 2026 Usher Syndrome Connections Conference in Bloomington, MN on Friday July 17th and Saturday July 18th!
This year, we are also offering the opportunity to share your story on video! Following your portrait photography session, you can decide whether you would like to work with our videographer, who will be collecting footage of individuals who want to share their stories on camera. These video and audio clips will be featured on the Usher Syndrome Society social media accounts.
Add your portrait and story to the EXHIBIT!
The Usher Syndrome Society will be photographing new portraits for the Shine a Light Exhibit at the 2026 USH Connections Conference in Bloomington, MN on Friday July 17th and Saturday July 18th!
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 2026 connections conference?
The USH Connections Conference is hosted by The Usher Syndrome Coalition and will be held on July 17th-19th in Bloomington, MN. 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.