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.

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.

A beautiful poem by Romee Vink - de Jong, who is living with Usher syndrome Type 2A, photographed in Nijmegen, Netherlan...
05/18/2026

A beautiful poem by Romee Vink - de Jong, who is living with Usher syndrome Type 2A, photographed in Nijmegen, Netherlands in 2025 by

“Each time when vou see me
I see you a little less
That is the speed
At which my eyesight regresses
I stand close to you and look
At your lips
To follow the story you are telling me
I look at your eves
It’s what I love the most
But I can no longer do both at once
Your story takes my eyes
To your hands
Which are speaking vividly
Back to your eves
And your mouth
The repetition tires me out
Sending my eyes back and forth
it makes me restless
I take a step back
It is as if I am trying to capture
a view with a camera
but I cannot get the whole building in sight
Because I am standing too close to you
Distance allows me the space
To see more of vou
And understand
Your story
Better”
– Romee

05/05/2026

A short recap of our Cocktails & Conversations with USH event in Chicago that took place on April 16th at the

What an incredible evening of support, laughter, and candid conversation between , and

PLUS, we raised over $146,000 for Usher syndrome research!!

Chicago you really turned up for this one and we hope to be back soon!

Check out the full interview conversation and event photos on the event webpage (link in bio)

Shout out to for this great video!

[Reel description: Recap video showing moments during our Cocktails & Conversations with USH event in Chicago that shows guests arriving, Jon Schultz sitting with his wife, Lizzie, talking with Rebecca Alexander holding microphones. There is a big crowd seated listening to them. There are a variety of shots that show people mingling, hugging, and chatting.]

04/14/2026

Living with Usher syndrome is a constant balance between living in the now and holding onto the hope for treatments.

This Thursday, we are hosting our next Conversations with USH event in Chicago featuring Jon Schultz and Rebecca Alexander, where they will have a candid discussion about their experiences living with Usher syndrome, a rare disease that causes progressive deafness and blindness.

The outpouring of support we have seen for this event has been unbelievable and tickets for this event are officially SOLD OUT.

If you were not able to get a ticket to attend, we will be sharing footage from this conversation and you can still make a donation to support research for Usher syndrome using the link on the event page!

The link to this page can be found in our bio and at https://www.ushersyndromesociety.org/event/cocktails-and-conversations-with-ush-chicago/

Thank you to everyone who has purchased tickets for the event and a huge thank you to our sponsors and The Wright-Patty Family



[Video description: A man is seated at a table and appears to be in an interview. He has short brown hair, light colored eyes, and wears a brown long sleeved shirt. The camera zooms in closer to his face as he speaks. At the end of the video, the screen fades to black and the Usher Syndrome Society logo appears.]

“It was hard at first accepting my condition with very little information that was available about Usher syndrome. Over ...
04/13/2026

“It was hard at first accepting my condition with very little information that was available about Usher syndrome. Over the years I have had to make adjustments to live everyday life and I have a great support system with my family and friends. My message to people who learn they have this condition is that there are resources available. Don’t be afraid to use them and don’t let USH hold you back from accomplishing your goals.”

William Laramie, living with USH2A
Photographed by in Philly in 2019 for our Shine a Light on Usher Syndrome Exhibit

“When I was diagnosed with Usher 1D, my heart was broken and I felt lost. It was overwhelming for me and I felt alone. I...
04/06/2026

“When I was diagnosed with Usher 1D, my heart was broken and I felt lost. It was overwhelming for me and I felt alone. I also had to stop driving when I was in high school. After graduating with a bachelor’s degree and working for approximately eight years, I became a stay at home mother to raise my two children. The more I learn, grow, become confident, and accept myself as a human being, the more I become like myself. It makes me feel good to know what is best and safe for me and always find ways to modify what I can do in life. Travel, hiking, and outdoor activities with friends and family are my favorite ways to earn memories. I don’t think of myself as usher syndrome, but as a human being. We all know that there is a hope for a cure.”

Heather Clark ( ), Diagnosed with Usher syndrome Type 1D at 17 years old
Photographed for our Shine a Light on Usher Syndrome Exhibit in Rochester, NY by in 2024

03/30/2026

Rick Brouwer and his guide dog, Rose, being photographed for our Shine a Light on Usher Syndrome Exhibit

Photos taken by in Nijmegen, Netherlands, 2025

[Video Description: A man wearing denim jeans and a light blue button down shirt kneels next to a black and white dog, petting the dog’s face. The dog wears a green harness and rests her head onto the man’s knee. They are seated in front of a gray photography backdrop.]

“I was diagnosed with Usher syndrome at the age of 11. I wasn’t too surprised at that point as I had already struggled t...
03/23/2026

“I was diagnosed with Usher syndrome at the age of 11. I wasn’t too surprised at that point as I had already struggled to play football and in low lighting situations. Over the years I didn’t let Usher stop me from achieving great things. I graduated University, became a Dad, currently work two separate jobs and secured a place in the London Marathon!”

- Jeff Robinson ( )
Photographed at age 30 in Rochester, NY in 2024 by and in the Netherlands in 2025 by for our Shine A Light on Usher Syndrome Portrait Exhibit

03/12/2026

Join us in Chicago on Thursday April 16th for our next Conversations with USH featuring and

Both Jon and Rebecca are living with Usher syndrome, a rare genetic condition that causes progressive deafness and blindness. Together, they will explore how this disease has affected their lives and the way they navigate their worlds.

The conversation will take place at from 5:30pm-8pm where light bites and drinks will be served, in addition to an opportunity to wear tunnel vision glasses and earplugs which simulate the hearing and vision loss of Usher syndrome.

Tickets are available in the link in our bio and on the Usher Syndrome Society Website. All proceeds go directly to Usher syndrome research

We hope to see you there!

Video footage taken by

[Video Description: A man with short brown hair and wearing a brown long sleeve shirt sits at a table next to a woman who has medium length blonde hair and is wearing a black blouse with white buttons. At some points in the video, the camera focuses on just the man or just the woman as they tell us about the man’s diagnosis. At the end of the video, there is text that says “ Learn more about Jon’s story at our upcoming event: Cocktails and Conversations with USH in Chicago, Thursday April 16th Chicago, IL”. Additional text reads “Tickets available now on the Usher Syndrome Society website” along with the Usher Syndrome Society logo.”]

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