September 20, 2025

Global Usher Syndrome Awareness Day 2025

Graphic with the text "Usher Syndrome Awareness Day, Sept 20th 2025" and images of an eye and an ear in gold an navy. A navy circle with the letters "USH" in gold is at the bottom center.

On Saturday, September 20th, we joined together for Usher Syndrome Awareness Day, honoring our global community that educates, advocates, and supports one another. It’s a day to celebrate connection, raise awareness, and fuel hope for treatments.

Usher syndrome is the most common genetic cause of deafblindness, affecting over 400,000 people worldwide. There are no treatments yet, but our community is growing, united, and determined to change that.

Since 2015, the third Saturday of September has been dedicated to spreading awareness in families, communities, and countries around the world. However you take part - by wearing blue and gold, sharing your story, hosting an event, or securing a proclamation - you’re helping shine a light on Usher syndrome. 

Usher Syndrome Awareness Day Events and Proclamations Around the World

CANADA

  • Prime Minister Mark Carney issued a statement conveying his warmest greetings to everyone marking Usher Syndrome Awareness Day in Canada.
  • Toronto, Ontario - On September 20, the Canadian USH Ambassador team will again create magic by having the CN Tower in Toronto light up in blue and gold, the colors of the Usher Syndrome Coalition community. There will be a local meet-up to view the lights; others can watch live on the CN Tower website.
  • Prince Edward Island - Through the efforts of Awais Nisar on behalf of the Canadian USH Ambassadors, Minister of Health and Wellness, Mark McLane, recognized Usher Syndrome Awareness Day with a proclamation.
  • Saint John, New Brunswick - Mayor Donna Noade Reardon recognized Usher Syndrome Awareness Day with a proclamation.

COLOMBIA

  • Bogotá - On September 16, USH Ambassadors Jairo and Diva hosted an event in honor of the global Usher Syndrome Awareness Day. They shared information about Usher syndrome and the work of the Usher Syndrome Coalition.

EGYPT and KUWAIT

  • USH Ambassador-in-training Dr. Suhair Eid Al-Hafiz Omar of Egypt wrote this article, including a photo of Fawaz Alenezi from Kuwait with two of his sons who have Usher syndrome.

GREECE

  • The Greek USH Ambassador team has organized activities for Usher Syndrome Awareness Day. They will participate in the DEAFestival, with a prepared speech by USH Ambassador Lemonia. 

IRAQ

  • “My daughter Deem is 6 years old and living with Usher syndrome. She loves swimming and gym activities. On Usher Syndrome Awareness Day, our family in Iraq will share her story to raise awareness and encourage others in our community to learn more about Usher syndrome.” - Message from USH Parent, Munther Abdulmonim

MEXICO

  • USH Ambassador Diana Velarde and the team in Mexico organized two events: 1) Usher Spanish Speaking Community Online Gathering and 2) Webinar on "Updates in the Care and Treatment of Usher Syndrome." 

SYRIA

  • The USH Ambassador team from Syria applied for and received final approval for funding an initiative called “Usher” in Damascus. The initiative will last for four months and will be officially launched on Usher Syndrome Awareness Day: “We will gather individuals with Usher, organize recreational activities, run competitions, and give them gifts: a bag designed with sign language letters spelling 'You are not alone,' also printed in braille. We will have fun activities, competitions, and giveaways.” 

UNITED STATES

Arizona

  • Thanks to a request by USH Coalition Board Director Tara Bowman, Governor Katie Hobbs issued a proclamation recognizing Usher Syndrome Awareness Day.

Connecticut

  • Governor Ned Lamont issued a proclamation recognizing Usher Syndrome Awareness Day, thanks to a request from Mikaela Zito

Florida 

  • Manatee County - Through the efforts of Brittany Morgan and USH Ambassador Lynne Gilpatrick, Usher Syndrome Awareness Day was recognized through this proclamation.
  • Miami - On September 18, Samantha Murphy launched her new website, Blindish in Miami: “In honor of Usher syndrome Awareness Day, we're proud to announce the launch of Blindish in Miami, a platform dedicated to sharing lived experiences and shining a light on life with Usher syndrome. Through stories, advocacy, and resources, Blindish in Miami seeks to build understanding, foster community, and drive support for research toward a cure.”
  • Palmetto - Brittany Morgan also secured a proclamation from Mayor Daniel West for Usher Syndrome Awareness Day.

Hawaii 

  • Following advocacy by Autumn Schaefer, Governor Josh Green proclaimed Usher Syndrome Awareness Day.

Illinois

Kentucky

Louisiana

Michigan

  • Through the efforts of Gina and Scott Thomas, Alicia and Ryan Smith, and USH Coalition Board Director Sarah Turner, Governor Gretchen Whitmer recognized Usher Syndrome Awareness Day with a proclamation.

Maine

Mississippi 

  • Jackson - On September 19, USH Ambassador and Board Director Danay Trest gave a speech at the 2025 Mississippi AER Conference.
  • Danay Trest also secured a proclamation from Governor Tate Reeves for Usher Syndrome Awareness Day.
  • Raymond - On September 24, in honor of Deaf Awareness Week at Hinds Community College, there will be a presentation on "Living with Usher Syndrome," along with a Deaf/Blind simulation.  

New York

  • Usher Syndrome Society is again “Taking Over Times Square,” starting at 11:00 am EST on September 20, with a rotating display of portraits featuring individuals with Usher syndrome on multiple electronic billboards. 
  • There will be a gathering of the USH Community in Central Park from 10:00 am-4:00 pm EST.  
  • Thanks to a request by the family of Mallory Jordan-Wysocki, Governor Kathy Hochul issued a proclamation recognizing Usher Syndrome Awareness Day. 

North Carolina

  • Pittsboro - The Zalewski family is participating in the Exceptional Strides for Exceptional Students 5K on Usher Syndrome Awareness Day. Their hope is to highlight the Usher syndrome community and the importance of awareness, understanding, and advocacy.
  • Through the efforts of the Obermeier family, Governor Josh Stein acknowledged Usher Syndrome Awareness Day with a letter of recognition.

Texas

Every year, many of our USH Ambassadors, USH Partners, and other interested individuals request a proclamation from their state government recognizing this day. Check out the proclamations received over the years, including the latest 2025 proclamations here.

Join the Vision - Just $9.20/month

Become an USH Visionary and help build a world where people with Usher syndrome are seen, supported, and connected - driving progress toward treatments.

Why $9.20? Because Usher Syndrome Awareness Day falls on September 20th this year (9/20). Your monthly gift of $9.20 is more than symbolic - it’s transformational. Even the smallest gifts can add up to something life-changing.

Every month, your gift fuels connection, accessibility, education, and hope for the USH community - strengthening the foundation for research and treatments by elevating the voices of those living with Usher syndrome.

Join us today and make a lasting impact.