Usher Syndrome Awareness Day September 19, 2026

Your Diagnosis Is Only Part of Your Story

Join the Global Movement. Usher syndrome is a medical diagnosis, but it does not define who you are, what you build, or how you live. On September 19, we come together to celebrate real stories, support personal choices, and speak for ourselves.

 

Celebrate & Connect: Global Activation Day

On September 19, we are spotlighting events, stories, and gatherings happening across the globe. Whether you are hosting a local meetup, sharing your journey online, or organizing an awareness event, we want to help amplify your voice.

  • Share Your Local Impact: Show how your community is bringing awareness to Usher syndrome—from state proclamations to grassroots gatherings. 
  • Tag Us Worldwide: Post your updates, photos, and event coverage on Instagram, Facebook, LinkedIn

  • Get Featured: Throughout the day, our team will be resharing, reposting, and highlighting global community events and individual stories across all our official social channels.

     

Official Proclamations: Elevate Local Awareness

Governments around the world recognize September 19 as Usher Syndrome Awareness Day through official proclamations. Securing a proclamation in your area helps shine a light on Usher syndrome, educate public officials, and build momentum toward research and support.

  • Request a Proclamation: Ask your mayor, governor, town council, or regional government to officially declare September 19 as Usher Syndrome Awareness Day.
  • Log Your Proclamation: Have you already submitted a request or secured an approved proclamation? Let us know so we can highlight your state or region on our global map! Email Us to Submit Your Approved Proclamation or Activity to info@usher-syndrome.org 
  • Explore Past Proclamations: See how advocates and Coalition Ambassadors have secured official recognition across states, provinces, and countries over the years.

 

Ways to Get Involved On September 19

  • Participate in "The Whole Story": Complete the prompt: "Usher syndrome is part of my story. I am also ____."
    • For example: “Usher syndrome is part of my story. I am also a grandfather, a woodworker, and the best pancake maker in my house.”
    • Submissions are welcome as text with image descriptions, voice recordings with transcripts, or ASL videos with English subtitles.
  • Explore Lived Experiences: Read and watch powerful reflections from community members, advocates, and Coalition Ambassadors who are reclaiming their narratives beyond clinical terms.
  • Read Current USH Community Stories 
  • Host or Attend an Event: Gather with local community members, allies, and families to foster connection and peer support.

 

Sustain the Momentum: Support the Usher Syndrome Coalition

Our work does not end on September 19. Your support fuels year-round programs, self-advocacy initiatives, research pathways, and community connections.

  • Power Community Programs: Help us maintain accessible resources, foster peer support networks, and host educational initiatives.
  • Drive Research & Clinical Trial Access: Support the ongoing work of the USH Trust and educational breakdowns that connect the community with safe, accessible research opportunities.
  • Champion Self-Advocacy: Ensure that individuals with Usher syndrome have the tools and platforms to lead their own narratives and drive policy awareness.