See Us Hear Us: An Immersive Gallery Fundraiser

Pam Aasen talks with Hannah Corderman during the See Us, Hear Us Fundraising Event in New York City.

Their events, and the “See Us Hear Us” evening was no exception, are always unique. They are deeply impactful and give visibility and a voice to those living with Usher syndrome. The evening provided those who attended with a profoundly moving experience as the venue was transformed into an immersive setting that surrounded us all with powerful visuals and sound. When I first stepped into the event, I was immediately overcome with emotion as I saw the ‘Shine a Light on Usher Syndrome’ portraits, clips from Sense Stories and documentary footage that shared personal experiences with the disorder, and Corderman family historical footage.

 To be surrounded by all the faces of the Usher syndrome community was profoundly moving, but the greatest impact on me personally was seeing the larger-than-life portraits of my sons, Ethan and Gavin, and hearing their voices and stories echoed across the whole venue. I did not anticipate how deeply emotional and overwhelming the experience would be; it immediately brought rushing back memories of getting the diagnosis, all their successes and struggles over the years, and the entirety of our family’s life since the diagnosis in 2009.

My only regret that evening was that I didn’t have enough time to speak with more of the people who were gathered. Everyone I spoke with agreed the event was amazing, and I even had the immense pride of pointing out to a couple I had just met that it was my children they were hearing and seeing on the display at that very moment. Since the event, I have spoken to several friends and people in the Usher community who wish they could have attended and who expressed hope that the Usher Syndrome Society will host another event like this soon.

While my intense emotional reaction as a mother seeing my children was unique, the profound nature of the experience was clearly felt by others I spoke with. This included the guest I brought with me, who became quite emotional despite never having met anyone with Usher Syndrome or attended an event about the condition before. She shared how the immersive design of the exhibit, with images displayed across the walls, floor, and ceiling of the dark gallery, was both highly educational and profoundly moving. She noted that the experience made the disability less abstract by detailing the different subtypes and the human impact of the progression. Most importantly, she remarked on the genuinely welcoming atmosphere, feeling an immediate sense of strong, supportive community among all the attendees, even as an outsider.

I also had an insightful conversation with a young woman who lives with Usher Syndrome. She shared that the dark venue was challenging even for her sighted family in attendance, and ultimately highlighted her own resilience. She explained that she came to a powerful realization about herself in that she was completely used to the type of exhaustion the environment caused, and instinctively knew how to cope by fully tuning her attention into the exhibit’s visuals and every person she spoke to. She observed that in a world where true attention is often a lost art, the ‘USHfam’ excels at tuning in to each other, a quality that everyone present seemed to rediscover that night. She saw the event as a huge achievement, successfully stirring deep emotion in all attendees, regardless of their connection to the condition, and effectively sharing the true lived experience of Usher Syndrome with the world.

A gathering of attendees in the immersive gallery at See Us, Hear Us

We have seen how effectively the Usher Syndrome Society uses storytelling in their fundraising to drive change. These events are not merely fundraisers; they are powerful moments for the community and crucial opportunities for awareness. I highly encourage you to attend one of their events if it comes to your area or even consider traveling to one. Based on my experience and that of others in the community, it is a truly worthwhile journey you will not regret. By experiencing this work firsthand, you will feel the urgency of the mission and gain a deeper, personal connection to the community. Most importantly, the ability of the Usher Syndrome Society to fund cutting-edge science relies entirely on community support. So far those of us who can, we can use our voices and resources to empower the ongoing efforts of the Usher Syndrome Society. Every dollar directly accelerates research, bringing us closer to a cure and securing the future for everyone with Usher syndrome, including my children Ethan and Gavin.