Usher Syndrome Coalition

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Usher Syndrome Coalition

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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.

11/04/2026

Meet the Guide Dogs of USH! 🐾 Our 2027 calendar winners are here, and all 12 featured pups are in the collage above.

Thank you to everyone who sent in photos and cast a vote. The calendar came together because of you.

Nov 17: Calendar launch
Dec 9: Last day to order for holiday delivery

A portion of every calendar sale supports the Usher Syndrome Coalition.

ID: The winners' photos above are arranged in four rows of three. Reading left to right, the first row is Finn, Olaf, and Elroy. The second row is Lo**ta, Kayden, and Nadine. The third row is Comet, Finnegan, and Nemo. The fourth row is Danson, Nico, and Zazu.

10/30/2026

Your story can help change the future of Usher syndrome treatments!

On April 8, 2027, our community has a rare chance to speak directly to the FDA.

Whether you want to apply to be a panelist or share your thoughts through comments, your voice matters.

Swipe through to learn what a PFDD meeting is, why it matters, and how you can get involved!

Apply to be a panelist by Nov 20, 2026 at fightingblindness.org/usher-pfdd or email [email protected] with any questions.

ID: Series of five graphics with black background, bold gold title text, white body text, and USH logo bottom center.

10/28/2026

Light the way for an inclusive Halloween!

For kids with Usher syndrome, night blindness (RP) and visual field loss can make Halloween trick-or-treating difficult to navigate. With a few thoughtful adjustments - like bright, even lighting, ground-level stations, and sensory-friendly treat options - you can create an environment where every child feels welcome.

Swipe through for simple ways to bring deafblind accessibility to your door this year.

ID: Six graphics with black backgrounds, bold lime green title text, and white body text. Slide 1 has an image of four cartoon ghosts trick or treating on the bottom left with USH logo bottom right. Slide 2-6 has the USH logo bottom center.

10/27/2026

Congratulations to HapWare! Their device ALEYE was named one of TIME’s Best Inventions of 2026 in the Accessibility category. ALEYE works with smart glasses to pick up facial expressions, gestures, and body language, then turns them into vibration patterns you feel on your wrist. Members of the Usher syndrome community helped test it and gave feedback along the way. Learn more at hapware.com

10/23/2026

What is Night blindness?

Progressive vision loss in Usher syndrome is caused by retinitis pigmentosa, or RP. RP causes photoreceptors, the light-sensing cells in the retina, to gradually deteriorate.

The first sign of RP is nyctalopia, also known as night blindness, which means difficulty seeing in dim lighting. This can make it hard to move around safely, like in restaurants, movie theaters, or at bedtime.

At first, vision is only affected in dim lighting, so this symptom is often overlooked or undetected for years. The retina has two kinds of photoreceptors.

Rods help us see in low light, and cones help us see color and fine detail in bright light. Next week, we will look at why this happens.

ID: Graphic with black background. 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.

10/16/2026

Voting for the first-ever Guide Dogs of USH Calendar is officially OPEN!

Our hardworking guide dogs have stepped into the spotlight, and now it’s time for the USH community to choose who will star in the 2027 calendar!

How to Vote:

Cast your vote for your favorite furry heroes between today and October 23 at 11:45 p.m. ET.

The top 12 dogs with the most votes will be featured in our printed 2027 calendar, and each winner gets a free copy!

Show your support for these incredible working, retired, and in-training guide dogs who do so much for our community every single day.

Link in bio and here: https://form.jotform.com/262884153856166

ID: Spiral bound calendar cover with photo of a yellow lab and grass in background. Navy banner at bottom with gold and white text "2027 Guide Dogs of USH" and Usher Syndrome Coalition logo bottom right.

10/15/2026

Today is White Cane Day! 🦯

For the and the broader blind, DeafBlind, and low vision community, a white cane is more than just a tool. It is a symbol of freedom, confidence, and independence.

A white cane helps you learn about the world around you when you cannot see it. As the cane tip brushes the ground, vibrations move up the cane into your hand. Your brain reads these signals to tell you what is ahead.

Using a white cane helps people travel safely, make their own choices, and explore the world on their own terms.

Swipe through to learn how white canes work and how they help people navigate safely and independently.

ID: Series of eight graphics with black background, bold gold header text, white body text, and USH logo bottom left. Slide 1 has two graphics, a folded white cane and a straight cane. Slide 6 has an image of two people walking, one with a white cane. Slide 8 has a white cane user crossing a crosswalk.

10/14/2026

Reminder: Submissions close tomorrow night! 🐾

Calling all USH Guide Dog Handlers! Your guide dogs work hard every day. Now it's their turn in the spotlight. We’re creating the first Guide Dogs of USH Calendar, and we want your dogs to be the stars!

How to Enter: Send us one horizontal photo per dog along with your dog's name. Working, retired, and in-training guide dogs are all welcome!

Deadline: Submissions close tomorrow, October 15, at 11:59 p.m. Eastern Time.

Photo Requirements:
Orientation: Horizontal (landscape) photos only, wider than they are tall.
Dog only: No people in the photo.
Quality: Please send the original photo, not a screenshot, so it prints clearly.

What Happens Next? Community Vote: From October 16 to 23, the USH community will vote for their favorites.

The Prize: The top 12 dogs will be featured in the 2027 calendar, and each winner will receive a free printed calendar!

Show off your faithful companions and help us celebrate our guide dog heroes!

Submit your photo via the link in our bio, at forms.gle/r9CAC4JhWs6i6dSU6, or email your photo to [email protected].

ID: Graphic with white background and navy text about and below two photos in center. Left photo: black and white King Charles Spaniel. Title at top. Right photo: yellow lab with Nemo fish toy. Title at bottom. USH logo bottom right.

10/08/2026

World Sight Day reminds us all to make eye care a priority through regular check-ups, vision tests, and eye exams.

For people living with Usher syndrome, a genetic condition that causes hearing and progressive vision loss from retinitis pigmentosa, protecting and maintaining eye health is important.

Around the world, members of the USH Community face unique barriers to eye care. These challenges include:
Getting affordable prescriptions and medications
Accessing genetic testing and clinical trials
Finding accessible transportation to and from doctor appointments
Obtaining assistive technology and accessible resources

No matter where you are on your journey, the Usher Syndrome Coalition is here for you. You are not alone.

Reach out to us for helpful resources, support, and connections to our global community.

Phone: +1 (800) 946-9203
Email: [email protected]

ID: Graphic with black background, bold white text curved around center image of an eye with USH logo in the middle.

10/07/2026

We were deeply moved by every single submission to our "Share the Whole Story" campaign. Each response was a powerful reminder that a clinical diagnosis is only where information begins - it is not the whole story.

Our community is made up of artists, advocates, parents, scientists, athletes, friends, and so much more.

The responses and community stories are now live on our website!

Visit the link in our bio to read these empowering statements and explore how members of our global community are living fully beyond clinical labels.

Thank you for helping us build connections, celebrate our lived experiences, and amplify the whole story.

Link: https://www.usher-syndrome.org/resources/usher-syndrome-is-part-of-my-story-i-am-also-____.html

ID: Graphic with gradient gold to white background, bold navy yest, and Usher Syndrome Coalition logo bottom center.

Address

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

Telephone

+18009469203

Website

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

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