Usher Syndrome Society

Usher Syndrome Society A nonprofit that uses arts, educational events, & collaboration to raise awareness for Usher syndrome

The Usher Syndrome Society is a non-profit that uses the Arts, educational events and collaboration to raise awareness and funding for Usher Syndrome (USH) to ultimately find treatments and a cure. Two of co-founder Nancy Corderman’s four children were diagnosed with usher syndrome (USH), a rare genetic disorder, and they are slowly losing both their hearing and eyesight. USH is the most common ge

netic cause of combined deafness and blindness. There are approximately 400 thousand people living in the world with Usher syndrome and about 25 thousand in the U.S.

“When I was diagnosed, I felt nothing but defeated. I couldn’t help but think how unfair it was that now I am going to l...
08/17/2026

“When I was diagnosed, I felt nothing but defeated. I couldn’t help but think how unfair it was that now I am going to lose my vision after being born deaf and having to fight those obstacles growing up. After meeting so many amazing people and my role models with usher syndrome, I learned that my story is just beginning. I have learned how to feel confident and okay with my diagnosis. My diagnosis has only pushed me to be the amazing person I am becoming. I now look forward to being a big advocate, role model and familiar face for anyone and everyone. I hope to be the reassurance people need in tough times.”

- Mia Brasseaux, Age 19
Diagnosed with Usher syndrome at age 12 (Type 1C)

📸 Photographed at the 2026 USH Connections Conference by photographer Lauren Petracca

08/13/2026

Shining a light on Usher syndrome 🌟

A few weeks ago, we attended the USH Connections Conference, where we took portraits and documented the stories of individuals living with Usher syndrome for our Shine a Light photojournalism exhibit.

These stories are authentic, powerful, and reflect the complex range of experiences and emotions that come with living with this rare disease.

As an organization, we strive to bring awareness to a disease most people have never heard of, while showing that it is possible to live a full, deeply meaningful life and still hold hope for treatments and a cure.

A sincere thank you to everyone who participated in our Shine a Light photography/videography and trusted us with your story 💙

Amazing work Chris Kim | Greenlit Productions for putting this video together and offering a small glimpse into our community and storytelling efforts.

Learn more about our work and how you can support at ushersyndromesociety.org



[Video Description: Many people of different ages and appearances are seated in the same indoor environment at the USH2026 Connections Conference. Each person talks directly to the camera in an interview style format, introducing themselves and talking about their experience being diagnosed and living with Usher syndrome. There is white text on a black background halfway through that says “Usher syndrome is the leading genetic cause of combined deafness and blindness.”]

It has been a pleasure designing the Usher Syndrome Coalition USH Connections Conference t-shirts for the last few years...
07/29/2026

It has been a pleasure designing the Usher Syndrome Coalition USH Connections Conference t-shirts for the last few years! The conference takes place every other year and takes place in a different location/state each time.

This year’s design features the outline of Minnesota with the letters “MSP” in both braille and English at the center of the state, along with a star marking Bloomington, where this year’s conference took place. MSP is the airport code for nearby Minneapolis–Saint Paul International Airport.

Swipe to see the designs from 2024 and 2022 ➡️

What an incredible weekend at the USH2026 Connections Conference hosted by Usher Syndrome Coalition in Minnesota! We are...
07/22/2026

What an incredible weekend at the USH2026 Connections Conference hosted by Usher Syndrome Coalition in Minnesota!

We are so grateful to have this opportunity to connect with the amazing USH community and a huge thank you to everybody who participated in our Shine a Light on Usher Syndrome Portrait Photography and Videography.

Thank you to our talented photographer Lauren Petracca and videographer Chris Kim | Greenlit Productions for capturing the faces and stories of USH, helping us bring awareness to this rare disease. Through these storytelling efforts, we are able to continue to fund groundbreaking Usher syndrome research.

We would also like to extend a huge shout out to our board member, Peggy and her family for their help during the conference and for sharing all of the powerful advocacy work that they have been spearheading!

07/11/2026

See you in one week! 📸

We cannot wait to take portraits for our Shine a Light on Usher Syndrome exhibit next Friday & Saturday at the Usher Syndrome Coalition 2026 Connections Conference in Minnesota.

We will also be offering video interviews this year, giving you the chance to tell your story in a new way!



[Reel Description: Video footage from the 2024 USH Connections Conference showing photographer Lauren Petracca taking flash photos of individuals who are posing in front of a black backdrop. Each video clip is followed by the final portrait photo of that person/people.]

06/26/2026

We are raising awareness and funds for Usher syndrome with our latest fundraiser: USH X Swim Alcatraz 2026

Ways YOU can participate:

1. Sign up now for our virtual swim fundraiser and swim 1.25 miles in any location/time of your choice

2. Donate to support our swimmers and help fund critical research for Usher syndrome

3. Attend the live event on Saturday, October 17th in San Francisco to cheer on our incredible swimmers as they make their way from Alcatraz to Shore

Send us a DM with any questions or go to the link in our bio to learn more!

[Reel description: Blue water glistens and a man swims across the screen doing the crawl stroke. An icon of a person swimming moves across the screen to join with the Usher Syndrome Society USH X Swim Alcatraz logo]

06/23/2026

This is USH featuring Jon Schultz

Jon was diagnosed in his early 20s with Usher syndrome type 3A, a rare disease that causes progressive hearing and vision loss. Jon lives in Chicago with his wife, Lizzie, their two children, and two adorable doodles.

We are so excited to share Jon’s story, which is filled with so much love and support. Today also happens to be Jon’s birthday, which makes sharing this film extra special🎉.

This short film is part of the Usher Syndrome Society’s ongoing series called “This is USH”, designed to bring awareness and greater understanding to Usher syndrome through personal storytelling.

A huge thank you Chris Kim | Greenlit Productions for all your hard work with filming and production.

[Video Description: A morning at home in Chicago with the Schultz family showing Jon and his wife, Lizzie, with their two going about their morning routine. During the film, there is white text on a black background that says “Jon has Usher syndrome type 3A” and “Usher syndrome is the leading genetic cause of combined deafness and blindness. There are currently no treatments or cure”. The film features Jon telling us about living with Usher syndrome in an interview style format, with additional footage of him with his family.]

06/08/2026

For over a decade, we have been taking portraits of the Usher syndrome community to bring awareness and greater understanding to Usher syndrome, a rare disease that causes progressive deafness and blindness.

All of these portraits were taken by during the 2024 USH Connections conference hosted by the Usher Syndrome Coalition ( )in Rochester, NY.

We are thrilled to share that we will be back taking photos (and optional videos!) at this year’s USH Connections Conference in Bloomington, MN on Friday July 17th-Saturday July 18th. You can sign up now on our website (LINK IN BIO).

In addition to having your portrait taken, we will be offering the chance to share your story on video! More details can be found on our website.

We hope to see you there!

[Video Description: A series of portraits showing many different people of all ages who are living with Usher syndrome who were photographed by photojournalist Lauren Petracca at the USH 2024 Connections Conference in Rochester, NY. Each person is photographed in dramatic, high contrast lighting, with their faces partially illuminated by light and partially in shadow. There is a dark black background behind them and white text overlaid in the beginning of the video that says “Raising awareness for a rare disease through photography and storytelling….]

06/03/2026

On Saturday October 17, 2026, the Usher Syndrome Society will host the USH X Alcatraz 2026 swim from Alcatraz to shore in honor of the crossing that Rebecca Alexander ( ) completed more than a decade ago.

Rebecca will swim as part of a group of 20 swimmers: 10 individuals living with Usher syndrome and 10 support swimmers.

Learn more about the swim and how you can support on our website (link in bio) 🏊‍♂️

[Video Description: Rebecca Alexander stands on a beach wearing a black wetsuit. She communicates using sign language while speaking. Her hair is pulled back, black sunglasses rest on her head, and a medal hangs around her neck. In the background, the water and shoreline are visible.]

for our Shine A Light on Usher Syndrome Exhibit Photographed by at the 2024 USH Connections Conference in Rochester, N...
06/01/2026

for our Shine A Light on Usher Syndrome Exhibit

Photographed by at the 2024 USH Connections Conference in Rochester, NY, where Jasmine was the keynote speaker.

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