Zoey’s Journey

04/24/2026

👁️🌎🩶🫶🏼

Science Education Friday: The Retina is Your Light-Sensing Layer

Science Education Friday: The retina plays a key role in vision. Think of your retina as the "film" in a camera. It’s essential for capturing the world around us and turning light into the images we see via signals for the brain to understand. When the retina is affected, it changes how we see the world around us.

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.

04/18/2026

Now Accepting Applications for Summer Quest 2026!

Ready for an adventure in the oldest city with new friends! Summer Quest is an overnight camp offering Expanded Core Curriculum (ECC) activities during the day and various recreational and social experiences in the evening.

Dates
• June 7-12, 2026 (ages 8-12)
• June 14-19, 2026 (ages 13-17)

Who Can Attend?
• Blind/Visually Impaired
• Deaf/Hard of Hearing
• Deafblind (dual-sensory)
• 8-17 year olds
• Florida resident

Visit our Summer Quest webpage to learn more and apply!

https://www.fsdbk12.org/page/summer-quest

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