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News • July 18, 2025

Expanding the Shine a Light on Usher Syndrome Exhibit at the 2026 Connections Conference

At the 2026 USH Connections Conference in Minnesota, the Usher Syndrome Society captured the portraits and stories of over 40 individuals living with Usher syndrome, helping to bring awareness to this rare disease through authentic storytelling.

Video by Chris Kim featuring footage from the 2026 USH Connections Conference

On July 17-18, 2026, the Usher Syndrome Society traveled to Minnesota for the USH 2026 Connections Conference to build upon our Shine a Light on Usher Syndrome Photojournalism Exhibit. 

Shine a Light on Usher Syndrome is one of the Usher Syndrome Society’s longest standing awareness initiatives, in which we share the faces and experiences of the Usher syndrome community. Portraits from this exhibit have been featured around the world, including on multiple Times Square billboards during our Every Second Counts Times Square Takeovers in 2024 & 2025.

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 year, we worked with photojournalist, Lauren Petracca, who photographed over 40 individuals living with Usher syndrome. We also worked with videographer, Chris Kim, who captured video footage of these same individuals talking about their experiences living with Usher syndrome.

By sharing these beautiful portraits alongside the written or recorded story, our goal is to bring greater understanding and attention to a rare disease that most people have never heard of. For those participating in the exhibit, this is also an empowering experience where you get to decide what story you want to tell and what you want to share with the world about Usher syndrome. 

Some of the portraits taken during the 2026 USH Connections Conference by Photojournalist Lauren Petracca 

A photo of a young boy with brown curly hair and glasses looking off to the side. He is half illuminated by light and half in shadow.
A photo of a young baby being held in their mothers arms. The baby wears hearing aids and is illuminated by light, with a dark black background behind them.
A young girl with brown hair pulled back in a ponytail is seated, looking off to the side with her arms crossed on her lap. She is illuminated by light, with a dark black background behind her.
A man looks straight ahead and rests his chin and both hands on his mobility cane. He has light gray hair and he is illuminated by light with shadow on one half of his face. There is a dark black background behind him.
A young girl stands in front of a black background. She is smiling and looking off to the side, while holding her miniskirt out to the side with both hands. She is illuminated by light, with half of her face in shadow.
A woman is seated at an angle looking straight ahead. She holds a cane in one hand and her face is illuminated by light. There is a dark black background behind her. She has a soft smile on her face and wears a blue short sleeve shirt.
A young man is seated in a chair with his elbows resting on his thighs as he leans forward towards the camera. He looks straight ahead with dark curly hair and wears a baseball cap. He is illuminated by light and there is a dark black background behind him.
A young woman with brown hair and bangs sits in a chair with a yellow lab on her lap. The woman looks straight ahead with half of her face illuminated by light and the other half in shadow. The background behind her is a dark black.