Usher Syndrome Society

10/14/2026

Thank you to the Hammonton Football team for supporting Usher Syndrome during Friday night's football game last week! Their "Light up the night" game was hosted in honor of Autumn and Mike Poalise's 2-year old son Joey, who is living with Usher syndrome type 2C.

You can learn more about Joey's story and donate to support Joey here: https://www.ushersyndromesociety.org/fundraisers/joey-poalise/

10/14/2026

3 more days until USH X Swim Alcatraz!

Learn more about our upcoming awareness event and fundraiser happening in San Francisco this Saturday October 17th. All proceeds from this event go directly to Usher syndrome research, bringing us closer to finding treatments and a cure for this disease.

Ten people living with Usher syndrome will swim from Alcatraz to San Francisco to raise awareness and funds for research toward treatments.

10/01/2026

Today marks the start of World Blindness Awareness Month 💙

Pictured above are twin sisters, Zahra and Safia Valika, who are both living with Usher syndrome, the leading genetic cause of combined deafness and blindness.

This portrait was taken by Lauren Petracca for our Shine A Light on Usher Syndrome Exhibit.

Swipe for a powerful quote from each of them ➡️



“Most importantly though, the main thing my diagnosis has taught me is that when you trip over a curb, it’s okay, because you can always get back up. I’ve tripped over many curbs, and here I am. In my future, I want to teach people that.”

– Zahra Valika, 19 years old
Diagnosed with Usher syndrome type 1B at 9 years old with her twin sister, Safia

“Usher syndrome is a struggle, but not a burden and support is one thing everyone needs! We should all work together to make things more accessible and inclusive to everyone in this world!”

– Safia Valika, 19 years old
Diagnosed with Usher syndrome type 1B at 9 years old with her twin sister, Zahra

09/30/2026

Tickets and Sponsorships are officially available for USH X Urban Wild 2026!

You are invited to join the Usher Syndrome Society as we return to Urban Wild Boston for our Annual Sight, Sound, & Strength Fundraiser on Tuesday, December 1st (Giving Tuesday)! Last year’s event was such a tremendous success that we simply had to return to this wonderful venue for another year, and we hope you will join us again.

Please enjoy this wonderful video captured by Chris Kim | Greenlit Productions at USH X Urban Wild 2025!

In addition to plenty of delicious food, drinks, bowling, games, and conversation, this year we will have a new musical guest and will debut one of our most recent short films.

All proceeds will go directly towards PUSH - the pipeline for Usher syndrome research, which is the Usher Syndrome Society’s collaborative research initiative focused on accelerating the development of treatments for multiple types of Usher syndrome. 

More information + tickets & sponsorship at the link in bio!

[Reel Description: Footage from our USH X Urban Wild event in 2025 featuring a variety of speakers from the Usher Syndrome Society, some of the scientists that our donations are funding, as well as excerpts from a conversation between Rebecca Alexander and Mark Erelli. Visuals include an indoor venue with string lights and festive decor, people bowling, having conversations, eating and drinking, and portraits from the Shine a Light on Usher Syndrome Exhibit featured around the room.]

09/19/2026

For over a decade, we have been Shining a Light on the people and stories of the Usher syndrome community as part of our mission to raise awareness and research funds for this rare disease.

Today, we are excited for you to hear some of these stories told directly by the individuals depicted in these powerful photographs, taken by Lauren Petracca at the USH 2026 connections conference.

Thank you Chris Kim | Greenlit Productions for these audio recordings and to everybody who has participated in this initiative over the years.



[video description: each slide depicts a portrait from our Shine a Light on Usher Syndrome exhibit which shows a person illuminated by light and partially in shadow. Some are featured, holding their cane or with their guide dog. Alongside their portrait, there is an audio component with written subtitles in which each person shares a little bit more about themselves and their experience living with Usher syndrome.]

09/18/2026

USH X Swim Alcatraz is just under 1 month away!

In honor of this exciting event, please check out our latest blog post written by Pamela Aasen, whose two sons, Ethan and Gavin, will be participating in the swim on October 17th!

09/09/2026

Meet the USH X Swim Alcatraz swimmers!

On October 17th, these impressive individuals will be making their way across the San Francisco Bay for our USH X Swim Alcatraz Fundraiser.

This iconic swim is approximately 1.5 miles across the unpredictable open waters of the Bay, from Alcatraz to shore.

For our swimmers living with Usher syndrome, the challenge is even greater. Many will enter the water with limited vision and without the hearing devices they rely on every day. Each will swim alongside a support swimmer who will help guide them through the currents toward shore.

Together, they are taking on this extraordinary challenge to raise awareness and critical funding for Usher syndrome research, bringing us closer to a future where we can stop this rare disease.

USH Swimmers: Rebecca Alexander, Meredith Tyree, Bella Dunning, Gavin Morrobel, Ethan Morrobel, William Laramie, Carter Von Hassel, Nathan Stockton and Olivia Castillo.

Support Swimmers: Alex Wood, Alec Mullarkey, Sophia Hegarty, Kerianne Brownlie, Lauren Alexander, Ania Burlinska, LeeAnn B. Harvey, Sara Fauquher, Calvin Gooley, & Caroline Brown.

Learn more about this event on our website (link in bio) and please consider making a donation to support critical Usher syndrome research!



Rebecca Alexander, LCSW-R, MPH is an author, psychotherapist, disability rights advocate, extreme athlete and a board director for the Usher Syndrome Society. She came to national prominence with the release of her book Not Fade Away: A Memoir of Senses Lost and Found in which she shares her journey with vision and hearing loss due to Usher syndrome. Her powerful philosophy of positive thinking, physical and emotional well-being, and perseverance have made her a coveted speaker for corporate, health care, and nonprofit organizations.

Rebecca holds two master’s degrees from Columbia University in Public Health and Clinical Social Work. She received post-graduate training at the Institute for Contemporary Psychotherapy at the Center for the Study of Anorexia and Bulimia and went on to complete her psychodynamic psychotherapy training from the American Institute for Psychoana

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.”]

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.]