Shine a Light on Usher Syndrome Photography in the Netherlands

In June 2025, the Usher Syndrome Society attended the USH2025 International Research Symposium in Nijmegen, the Netherlands. The conference was hosted by the Netherlands-based organization, Stichting Ushersyndroom, and brought together researchers from all over the world who are focused on Usher syndrome research. 

In addition to hearing many exciting research updates, we also had the opportunity to meet and photograph researchers, family members, organization leaders, and individuals living with Usher syndrome to include in our Shine a Light on Usher Syndrome Global Photojournalism Exhibit. 

Historically, the exhibit has primarily featured individuals who are living with Usher syndrome and this event marked a broadening of the exhibit to include people who may not have Usher syndrome themselves, but are deeply involved in and connected to the Usher syndrome community. 

We are thrilled with how these portraits turned out and we cannot wait to showcase them in upcoming displays of the Shine a Light Exhibit. 

A tremendous thank you to our wonderful photographer, Gigi deManio, who made every portrait session feel fun and easy,  while also capturing incredibly powerful and beautiful portraits of each and every person who participated.