Usher Syndrome Coalition

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Usher Syndrome Coalition

Usher Syndrome Coalition: Connecting the global Usher community.

Usher Syndrome Coalition: Working to find a cure for the most common genetic cause of combined deafness and blindness.

06/18/2026

Join the USH Connections Conference from Anywhere!

One month from today, the Usher syndrome community is coming together and you can be in the room from wherever you are in the world!

If you can’t make it to Minnesota in person, you don't have to miss out on the largest global gathering of USH families, researchers, and professionals.

Secure your Virtual-ONLY ticket today for just $100.

What your Virtual Access via the Whova event app includes:
Saturday, July 18: Front-row seat to live-streamed General Session presentations on the latest medical breakthroughs and community resources.

Community Connection: Full networking, chat, and engagement opportunities with global families and experts via the Whova event app.

Don't miss this life-changing event. Register today and join our global community online!

Click the link to register for Virtual Access now! https://www.usher-syndrome.org/ush2026.html

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06/12/2026

Science Education Friday: Higher Chances of Cataracts with USH

Cataracts can cause blurry or cloudy vision, but they are often treatable. For people with Usher syndrome, cataracts can be common. Treating cataracts can improve vision, even though it does not stop other retinal changes.

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06/11/2026

Motherhood is already one of the most challenging and rewarding journeys a person can take. Add Usher syndrome, and the road looks a little different. The progressive loss of vision and hearing that comes with USH can make everyday moments of parenting feel more complicated, more isolating, and harder to navigate without someone who truly understands.

That is exactly why Awesome Moms with USH exists.

Five years ago, a group of mothers living with Usher syndrome found each other and built something extraordinary. This private community connects through a Facebook group, WhatsApp, and regular Zoom meetings, creating a space built around honesty, shared experience, and the kind of understanding that only comes from someone who is living it too.

Every stage of motherhood with USH is represented here - from newly diagnosed moms with young children to experienced moms who now show up to guide others earlier in the journey.

Women from across the United States, Canada, and Australia have described this group as a lifeline, a safe place to ask hard questions, celebrate the wins, and simply be understood.

If you are a mother living with Usher syndrome, you are not alone. Visit the link to read the full blog post, hear from members in their own words, watch the video, and find out how to join.

https://www.usher-syndrome.org/resources/all-ush-news.html/article/2026/06/10/awesome-moms-with-ush

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1: Eight people smile at the camera white and red orientation canes posing on a Sedona trail with red rocks behind them.
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06/09/2026

The USH Trust was built for YOU.

It's free. It's confidential. It takes just minutes to join, but the impact lasts a lifetime.

Here's what that looks like in action: When Sepul Bio needed to find participants for the LUNA clinical trial, a gene-specific study for individuals with USH2A caused by changes on exon 13, they turned to the Usher Syndrome Coalition. We went to the USH Trust. The result? More than 95 direct referrals to clinical sites from our community alone.

That's not a small number. For a rare disease like Usher syndrome, that's everything. Clinical trials can't move forward without participants, and participants can't be found without a connected, informed community. That's what the USH Trust makes possible.

When you join, you're the first to hear about research opportunities and clinical trials. You help researchers find the right people at the right time. And you become part of the most powerful tool we have to accelerate treatments for Usher syndrome.

The research is moving. Be part of it.

Join the USH Trust today - link in bio.

Want to learn more? Join us at the USH Connections Conference, July 17–19 in Minnesota, meet the researchers, explore the latest science, and see firsthand how your participation is making a difference.

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06/05/2026

Science Education Friday: What is Cystoid Macular Edema?

CME affects the macula, the part of the retina used for central vision. With the right care and medication, this condition can often be managed to help protect vision.

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06/04/2026

Meet the team behind the Usher Syndrome Coalition! We are a small but passionate group of people who are deeply committed to this community and we wanted to take a moment to introduce ourselves and share a little bit about our work.

And we have to say, we are SO excited for what is just around the corner. USH2026 is just over a month away, July 17-19 in Bloomington, MN and online, and the energy on our team right now is everything!

This is the largest global gathering of the Usher community, and bringing everyone together, in person and virtually, is what we have been working on behind the scenes. We can't wait to share this experience with our USH Community.

If you haven't registered yet, there is still time! We would love to see you there. Link in bio.

Video description: Six members of the Usher syndrome community each introduce themselves and their job tole. Speakers appear one at a time in this order: Krista, Julia, Nancy, Lawreen, Clare, and Yael.
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05/29/2026

Science Education Friday: USH Affects Hearing In Addition to Sight

Hearing loss in Usher syndrome can vary by type. USH affects "hair cells" in the inner ear that help process sound. With tools like hearing aids, cochlear implants, Sign Languages, and other communication strategies, many people find ways to stay connected and engaged.

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05/27/2026

USH on the Hill 2026: Your Voice Is Making a Difference

Building on last year's momentum, where 16 USH Champions held 35+ congressional meetings, this year, 21 USH Champions and their families (plus one new guide dog!) advocated in person on Capitol Hill, conducting 25 face-to-face meetings with lawmakers and their staff.

Community members also submitted written testimony to both chambers' Labor, Health and Human Services, Education, and Related Agencies (LHHS) Appropriations Subcommittees - 38 on the Senate side and 25 on the House side. This community keeps showing up.

A Growing Network of Champions
Our advocacy network has now expanded to 168 USH Champions representing 40 states and 125 congressional districts! That kind of geographic reach means lawmakers across the country are hearing directly from the people Usher syndrome affects most — and that number continues to grow.

What We're Fighting For: This year's USH on the Hill was our fifth official advocacy visit to Capitol Hill for our community. Our priorities are clear:
Increase federal research funding: Our goal is to accelerate a cure for Usher syndrome by securing $50,000,000 in vision loss research funding for an Usher Syndrome Healthy Eyes Restoration (U.S.H.E.R) Research Program.
Build the road to clinical trials: Advocacy doesn't stop at policy. By pairing our Capitol Hill efforts with enrollment in the USH Trust and the Data Collection Program (DCP), we're ensuring that when treatments are ready, our community is ready too.

Thank You! None of this happens without you. Every USH Champion who made a call, submitted testimony, sent an email, or walked the halls of Congress this year is part of something bigger than any one of us. We'll keep you updated as this work moves forward.

05/22/2026

Science Education Friday: Rods help us see in dim light and notice movement, while cones help us see color and fine detail. Because rods are often affected first in Usher syndrome, early signs usually include trouble seeing at night.

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05/21/2026

Thursday, May 21, 2026, is Global Accessibility Awareness Day (GAAD).

As we look ahead to USH2026, accessibility isn’t just a goal, it’s a commitment. We’re dedicated to creating an event experience where everyone in our community can fully participate, connect, and belong.

For our , accessibility means designing with intention - both online and in person. This includes:

Digital access:
•Captions and live transcription
•Large font and high-contrast visuals
•Alt text and image descriptions

In-person access at USH2026:
•ASL interpreters, tactile and Protactile interpreters
•CART/live captioning on-site
•Assistive listening devices
•Clear wayfinding and trained guides
•Accessible seating and sightline considerations
•Quiet/rest spaces for sensory breaks
•Staff and volunteers trained in accessibility support

At USH2026, these principles guide everything we build from digital materials to on-site experiences because accessibility is essential to independence, connection, and inclusion.

Learn more about GAAD and why accessibility matters:
https://accessibility.day/

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Address

9 Cornerstone Square, Suite 400/224
Westford, MA
01886

Telephone

+18009469203

Website

https://www.usher-syndrome.org/

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