Zoey’s Journey

04/11/2026

The 3 types of Usher Syndrome. Zoey has 2C. We’ve been praying everyday for more funding, more research, know knowledge towards a cure! 🫶🏼

Science Education Friday: The genes for each USH type

Usher syndrome is caused by changes in different genes, grouped into three types, with at least 10 subtypes. Your specific gene can shape your experience with Usher syndrome, your eligibility for clinical trials, and what treatments researchers are working toward.

Here are the genes currently associated with each subtype:
Type 1: USH1B (MYO7A), USH1C, USH1D (CDH23), USH1F (PCDH15), USH1G
Type 2: USH2A, USH2C (ADGRV1), USH2D (WHRN)
Type 3: USH3A (CLRN1), USH3B (HARS)

Each type affects hearing, vision, and balance in different ways, which is why symptoms can vary from person to person.

A note on the naming: subtype names and gene names don't always match. USH1B, for example, is caused by changes in the MYO7A gene. If you know your subtype but not your gene, or vice versa, the list above can help you connect the two.

Don't know your subtype or gene yet? Genetic testing can help, and we can help you figure out where to start.

ID: Graphic with black background. Faded white DNA helix in both the upper right and bottom left corners. Usher Syndrome Coalition logo bottom left. Series title "Science Education" in bold white in upper left corner. Bold title text in gold. Bold white body text.

04/09/2026

Florida School for the Deaf and the Blind
Zoey absolutely loved to watch this! 🕺🧏‍♂️ Lighthouse Vision Loss Center

04/09/2026

Florida School for the Deaf and the Blind 💃🫶🏼
Lighthouse Vision Loss Center

04/04/2026

Zoey's commitment to the Lighthouse Vision Loss Center is making a difference - catch up on their latest events! 🫶🏼🐴🪂🐣🧏‍♀️👀

04/03/2026

When you learn that Usher syndrome has a genetic cause, the next question is usually: which gene? The answer matters more than you might expect.

At least 10 genes are linked to Usher syndrome, and each one plays a specific role in how the body develops and functions. Changes in these genes can affect:

-How inner ear hair cells transmit sound
-How photoreceptors in the retina stay healthy
-How balance-sensitive hair cells function

This is why two people with Usher syndrome can have very different experiences. And it's why identifying your specific gene is such an important step in understanding your diagnosis. A genetic confirmation of your type of USH will also help connect you with the right clinical trials, while helping researchers build toward treatments that target the underlying cause.

Don't know your gene yet? Talk to your care team about genetic testing, or reach out to us. We can help point you in the right direction.

ID: Graphic with black back round. Two faded white DNA helixes in upper right and bottom left corner. Usher Syndrome Coalition logo bottom left. Series title "Science Education" in bold white in upper left corner. Bold title text in gold. Bold white body text.

03/30/2026

Science Education Friday: How Genes Work

When two carriers have a child, there is a 25% chance the child will have Usher syndrome. This pattern is called autosomal recessive inheritance. Learning how genes are passed down can help families better understand a diagnosis and what it may mean for future generations.

ID: Graphic with black back round. Two faded white DNA helixes in upper right and bottom left corner. Usher Syndrome Coalition logo bottom left. Series title "Science Education" in bold white in upper left corner. Bold title text in gold. Bold white body text.

03/20/2026

🧏‍♀️💙👩‍🦯‍➡️

Science Education Friday is back! Each Friday we'll cover a different topic about USH by starting at the beginning.

USH is the leading genetic cause of deafblindness that affects between 4 to 17 people out of 100,000.

Come back next week for our next Science Education topic!

ID: Graphic with black back round. Two faded white DNA helixes in upper right and bottom left corner. Usher Syndrome Coalition logo bottom left. Series title "Science Education" in bold white in upper left corner. Bold title text in gold. Bold white body text.

02/28/2026

02/27/2026

Behind every rare warrior is a tribe who loves them fiercely.

Today we show our stripes and our support. 🦓💙
Because rare deserves to be seen, heard, and understood.

In honor of rare disease awareness day (2/28) the kids are showing their support 🫶🏼

02/04/2026

🙏💜

This statistic stops people in their tracks every time.

The Sjögren’s Foundation reports that people with Sjögren’s may be up to 44x more likely to develop lymphoma.

Let that sink in.

This isn’t just dry eyes.
It isn’t just dry mouth.
It isn’t “being tired.”

But here’s the part that matters just as much:

Knowledge changes outcomes.
Monitoring works.
Early detection saves lives.

Many people with Sjögren’s never develop lymphoma — and when risks are recognized early, doctors can watch closely, run the right labs, and act quickly if something changes.

That’s why awareness matters.
That’s why being taken seriously matters.
That’s why sharing this matters.

Not to scare — but to protect.

Save this. Share it. Send it to someone who still thinks Sjögren’s is “just dryness.”

01/05/2026

STORY TIME ⏰👇

Christmas didn’t go the way we expected this year.

Zoey fainted and had seizures, and in that moment everything else disappeared. The fear, the confusion, the waiting—those are things I’ll never forget. We rushed her to the ER, hoping for answers, hoping for reassurance… and she was sent home.

Since then, it’s been a blur of watching closely, worrying quietly, and trying to stay calm while your mind runs through every possible scenario.

Today we finally followed up with a neurologist. We’re still waiting on results, but right now they’re leaning more toward cardiology and possibly POTS. So while we don’t have clear answers yet, we’re taking the next steps and advocating hard for her.

This journey for her has been exhausting and emotional in ways I wasn’t prepared for. There’s something incredibly helpless about not knowing what’s happening inside your child’s body—and still having to be strong for them, when all you want to do is breakdown.

If you’ve ever walked through unexplained medical episodes, especially with your child, you know how heavy the waiting can be. We’re hopeful, cautious, and taking it one appointment at a time.

Please keep Zoey in your thoughts as we wait for answers 🤍 And thank you to everyone who has checked in, prayed, and shown support—it means more than you will ever know.