Lobby-ing for ush

An Awareness Campaign for Usher Syndrome in Lobbies Around Boston

Lobby-ing for USH is an opportunity to showcase our powerful Shine A Light on Usher Syndrome Photojournalism Exhibit in prominent building lobbies around the city of Boston (and beyond!). The exhibit is comprised of portraits and stories of people and families around the world living with the rare disease, Usher syndrome.

What is USH?

Usher syndrome is the leading genetic cause of combined progressive deafness and blindness. It is a rare disease that is estimated to affect 400,000 people worldwide, yet only 1% (4,000) have been identified. This means that there are likely many more people living with Usher syndrome, who have not yet been diagnosed.

There are currently no treatments and no cure for Usher syndrome

What is the Usher Syndrome Society?

The Usher Syndrome Society is a non-profit that uses storytelling through the arts, educational events, and collaboration to raise public awareness and funds for research to find treatments and a cure for Usher syndrome (USH). The USH Society gives a face and a voice to those living with USH, making this invisible disease visible.

In addition to awareness campaigns like “Lobbying for USH”, the Usher Syndrome Society is committed to funding critical Usher syndrome research and currently funds 3 separate research grants.

Do you have the next space to host the shine a light exhibit?

We would love to hear from you! This campaign is an exciting opportunity to bring the faces and stories of Usher syndrome to as many people and locations as possible. The portraits that make up the Shine a Light exhibit are easy to transport and set up in any space, and offer a meaningful interactive experience for the public, while simultaneously bringing much needed awareness to a rare disease.

How can you Help?

Currently there are no treatments or cure for Usher syndrome, but the Usher Syndrome Society is working hard to change that. Every donation made to the Usher Syndrome Society goes directly towards funding groundbreaking hearing and vision research in labs around the world.