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.

09/04/2026

Usher syndrome can show up in a family with zero history of it. Here’s why.

The answer is in how it’s passed down.

Most Usher syndrome cases are inherited in an autosomal recessive pattern. This means a person usually needs two changed copies of the same USH gene to have Usher syndrome, one from each parent.

A person with just one changed copy is called a carrier. Carriers usually don’t have symptoms, so many people have no idea they’re carriers.

If both parents are carriers of changes in the same USH gene, each pregnancy has:
a 1-in-4 chance that the child will have Usher syndrome
a 1-in-2 chance that the child will be a carrier
a 1-in-4 chance that the child will inherit neither changed copy

Those chances start over with each pregnancy.

That’s how Usher syndrome can appear in a family even when no one else is known to have it.

Nobody did anything wrong. It’s simply how genes can be passed down. Understanding how it works can bring clarity and help families make informed choices about what comes next.

Next Friday: What actually happens when you get a genetic test?

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09/01/2026

What is Usher syndrome?
Usher syndrome is a rare genetic condition that affects both hearing and vision. It is the leading genetic cause of deafblindness.

Here are the key things to know:

Hearing: Most people with Usher syndrome are born with hearing loss or lose some of their hearing when they are young.

Vision: Over time, it also causes vision loss due to an eye condition called retinitis pigmentosa (RP), which usually starts with night blindness and loss of side vision.

Balance: Some people with Usher syndrome may also have trouble with their balance.

Because Usher syndrome changes over time, people and families adapt along the way finding new ways to communicate, navigate, and support each other.

Your diagnosis is only part of your story. While Usher syndrome is a medical diagnosis, it does not define who you are, what you can do, or how you live your life.

On September 19 for Usher Syndrome Awareness Day, we come together to celebrate our community, share our stories, and support one another!

ID: Four graphics. Slide 1 has gradient yellow background fade to white. Slide 2-4 white background. All bold navy text with USH Awareness Day logo bottom right.

08/28/2026

“We think it might be Usher syndrome” and “it’s confirmed” can be years apart.

Last week, we looked at how a diagnosis often begins. This week: what it can take to get answers.

Doctors may use hearing, vision, and balance tests to diagnose Usher syndrome. Genetic testing can help confirm the diagnosis and find the gene changes that caused it.

Genetic testing usually starts with a blood or saliva sample sent to a lab for analysis. Results may take weeks or months. Some people are first given a different diagnosis or are told to wait and see how their symptoms develop. Others get answers much sooner.

There isn’t one diagnosis timeline that fits everyone.

Waiting for answers can be hard. But the time it takes to reach a diagnosis doesn’t make what you’ve experienced any less real. Once you have more information, it can help you make choices about your care, connect with community, and explore research opportunities.

Next Friday: Why can USH show up in a family with no history of it at all?

ID: Graphic with white background, bold navy text, DNA helix images upper right and lower left. USH logo bottom right.

08/25/2026

Your diagnosis is only part of your story.
Usher syndrome is a medical condition, but it does not define who you are, what you can achieve, or how you live your life.

Usher syndrome is a rare condition passed down through families that affects hearing and vision. It is the leading genetic cause of deafblindness, affecting more than 400,000 people around the world.

Because vision and hearing can change over time, individuals and families learn to adapt, building strength, support, and community every step of the way.

On September 19, we come together to celebrate real stories, support personal choices, and speak for ourselves.

How to get involved:
Share “The Whole Story”: Finish this phrase: “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.” Share it as text with image descriptions, a voice recording with a transcript, or an ASL video with subtitles.
Request a Proclamation: Ask your local or state leaders to recognize September 19, 2026, as the official Usher Syndrome Awareness Day.
Tag Us Worldwide: On September 19, tag us using ! We’ll be sharing your local events, meetups, and stories all day long.

Link to read stories, submit your own, and count down with us: https://forms.gle/gqnGnFVK2FAUW8uJ6

ID: Six graphics. Slide 1 has gradient yellow background fade to white. Slide 2-6 white background. All bold navy text with USH Awareness Day logo bottom right.

08/21/2026

Ask five people with Usher syndrome how they found out, and you’ll hear five different stories.

That’s because Usher syndrome doesn’t follow one script.
With type 1, babies are typically born with severe to profound hearing loss. They may also have balance differences that can delay sitting or walking. Vision changes often begin during childhood or the teen years. These changes are caused by retinitis pigmentosa (RP), an eye condition that leads to progressive vision loss.

In type 2, hearing loss is also present at birth, but balance is usually unaffected. Vision changes from RP tend to begin later, often during the teen years or early adulthood.

Type 3 can look different again. Hearing and vision loss usually begin later and get worse over time. Some people may also develop balance problems.
Usher syndrome can look different from person to person, even among people with the same type. That’s why hearing, vision, and genetics specialists may all play a role in connecting the dots.

However your diagnosis unfolded, it’s real. It’s valid. And it’s only the beginning of your story.

This kicks off a five-week series on the science behind USH. Next Friday: What does it take to turn a suspected diagnosis into a confirmed one?

ID: Graphic with white background, bold navy text, DNA helix images upper right and lower left. USH Awareness Day logo bottom right.

08/19/2026

Usher Syndrome Awareness Day is ONE MONTH away!

Mark your calendars for September 19, 2026.

On this day, we come together worldwide to celebrate real stories, support personal choices, and speak for ourselves.

More details to come soon!

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08/18/2026

USH2026 is over, but its impact is just beginning!

We just wrapped up the largest gathering of the Usher syndrome community EVER! 575 people connected in person and online across 28 countries, with full accessibility at the heart of it all.

Behind the scenes, our small team works every day to keep this momentum going - connecting families to clinical trials, providing 1-on-1 support, and expanding the USH Trust across 85 countries.

Bringing our global community together changes lives, but we can't do it alone. Help us keep the connection strong:

Link to Donate: https://www.usher-syndrome.org/make-an-impact/donate.html

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08/12/2026

Looking to connect with others in the Usher syndrome community?
Join the USH Blue Book Online Forum!

The USH Blue Book is a private email group created for individuals with Usher syndrome (ages 18 and older) and their families to communicate, share experiences, and support one another on topics related to Usher syndrome.

Every post is saved for future reference, creating a growing wealth of knowledge built directly by YOU — The Experts!

Tip: Using a Gmail account works best when joining this forum.

Ready to join the conversation? Fill out the form on our Connect with Others page to subscribe!

https://www.usher-syndrome.org/resources/connect-with-others.html

08/07/2026

We don’t usually ask for support outside of our year-end campaign
, but this summer is different!

Sepul Bio’s Phase 2b LUNA trial is fully enrolled across 10 countries. Rare disease trials are tough to fill, but through the USH Trust, our community helped make it happen.

We don’t run trials or fund the science—we build the bridge to ensure researchers can find our community, and our community can find research. Plus, we've already supported nearly 400 families seeking guidance this year.

This work doesn't pause for the summer, and neither do the costs.

If you’ve been waiting for the right moment to give to the Usher Syndrome Coalition, this is it. Keep our community connected to research.

https://www.usher-syndrome.org/make-an-impact/donate.html

08/06/2026

We are deeply saddened to learn of the passing of former House Appropriations Chairwoman Kay Granger, a true friend and early champion of the Usher syndrome community.

Chairwoman Emeritus Kay Granger was one of the first leaders in Congress to recognize the dire need for increased research funding for Usher syndrome.

Beyond her formidable leadership, she was a remarkably kind, warm, and caring person who offered her unwavering support when we needed an ally most.

We will always cherish her bold encouragement—especially the unforgettable moment she reminded us that we should be asking for more than $50 million!
Her willingness to stand alongside our community paved the way for vital progress. We extend our deepest condolences to her family and loved ones.

Thank you, Chairwoman Granger, for believing in our mission.

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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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