Zoey’s Journey

09/12/2026

Two Years of Hard Work. One Meaningful Milestone. 💙

After two years of advocacy, dedication, and tireless work to raise awareness about Usher syndrome, I am deeply honored and humbled to receive a proclamation from Governor Ron DeSantis, Governor of Florida, recognizing the importance of Usher syndrome awareness.

This moment means so much because it represents far more than a proclamation. It represents the voices of individuals and families living with Usher syndrome, the challenges they face, and the importance of creating greater understanding, support, and awareness.

For the past two years, we have worked to shine a light on a condition that is still too often misunderstood or unknown. Today, we celebrate how far we have come—and we remain committed to continuing the fight for awareness, inclusion, research, and hope.

I am incredibly grateful to everyone who has supported this mission, shared our message, and helped bring Usher syndrome awareness to the forefront.

This recognition belongs to the entire Usher syndrome community. 💙

Thank you, Governor DeSantis, for recognizing the importance of this cause.

Two years of hard work. One powerful message: Awareness matters. Every voice matters. Every person matters. 💙

09/05/2026

💙🫶🏼🦓

One of our own Sharks is responsible for the proclamation in Manatee County that brings awareness to Usher Syndrome! We are proud of you, Zoey! 🦈💚💙

08/20/2026

💙✨ COME SHOW YOUR SUPPORT FOR ZOEY! ✨💙

Something very special is happening, and we want YOU there! 💙

On Tuesday, September 1st at 9:00 AM, our community will come together for a Proclamation Meeting recognizing Usher Syndrome Awareness Day.

This moment means so much to our family and to the entire Usher Syndrome community. It’s an opportunity to raise awareness, show support, celebrate strength, and help give a voice to families living with Usher Syndrome.

💙 WEAR BLUE FOR ZOEY! 💙

Whether you know Zoey personally or simply want to stand beside her and help spread awareness, your presence matters. Every person who shows up helps remind Zoey that she is surrounded by people who believe in her, support her, and are willing to stand with her.

📅 Tuesday, September 1st, 2026
⏰ 9:00 AM
📍 1112 Manatee Ave West, Bradenton, FL 34205

💙 Come wear blue. Come stand with Zoey. Come help us make a difference.

Please share this post, invite your friends and family, and help us fill the room with BLUE! 💙✨

Hear the hope. See the vision. Stand with Zoey. 🩵

08/19/2026

📢 Make those calendars everyone!

📆 September 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!

ID: Graphic with bold navy text, gold background of large circles fading downward, and Usher Syndrome Coalition logo bottom center.

08/12/2026

Every year until it happens, we will continue to make our voices heard! 📢👏

Alone we can do so little. Together we can do so much.
-Helen Keller

💙 Usher Syndrome Awareness Day
September 19, 2026

We have submitted more requests to the Governor’s Office for the state to proclaim the third Saturday of September Usher Syndrome Awareness Day.

📢 If you would like to help spread awareness, here is the link to the page to submit a request. I will post the language that is required in the comments below. You can copy and paste it onto the request form.

✨ If not please share this post and Zoey’s Journey Page 🙏

https://www.flgov.com/eog/news/proclamations

If you need help or have any questions, please let me know.

Let’s work together to make this happen this year! ❤️

What is a proclamation?A proclamation is an official document issued by Governor Ron DeSantis to commemorate a specific time period (day, week, or month) for the purpose of raising awareness about an issue, or celebrating milestones.ProclamationsApril 15, 2026 - April Special Session ProclamationMay...

06/26/2026

🧏‍♀️🤟🏼👩🏼‍🦯‍➡️

06/20/2026

Spoiler Alert: Zoey crushed it!🚀

Heading into Summer Quest at FSDB, Zoey felt those familiar first-day nerves, but her determination won out. And in true Zoey fashion, she didn’t waste a moment. She immediately clicked with a new bestie from Tampa and turned nerves into pure unforgettable fun. To say she loved it would be an understatement—she ABSOLUTELY adored every single second!🥰✨

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.