Usher Syndrome Coalition

USH2A Clinical Trial Webinar May 20th. Usher Syndrome Coalition and Sepul Bio. Join the USH Trust for invite. Bold navy font on gold background with logos of organizations in center in white box. USH logo bottom center.

Learn more about the LUNA clinical trial for USH2A: Join the USH Trust to get an invite to our webinar with Sepul Bio! u3655239.ct.sendgrid...

"International Guide Dog Day" in bold white font on navy background. Circle of guide dog graphics around a circle in gold. USH logo in white above text.

On International Guide Dog Day, we celebrate the four-legged heroes who help people with vision loss reclaim independence. From navigating streets to mastering daily routes, these incredible dogs - and the teams who train them - make the world more accessible and full of possibility.

Clinical Trial Update: jCyte Now Recruiting Patients with RP for jCell Therapy Trial, JC02-88

JC02-88 Study Overview: Enrollment goal: Up to 60 people with RP Treatment: A single shot of jCell or a sham (a shot without therapy) Duration: 6 months Location: Southern California A graphic of a clipboard and people representing a trial is in the bottom right-hand corner.

JC02-88 Study - Next Steps: Learn more at 1) the jCyte Study Page and 2) the Clinical Trial Page. To the right of the text is a graphic of a webpage with an arrow hovering over it. Interested in joining? Talk with your retinal specialist. They can help determine if you qualify and explain the next steps. To the left of the text, a graphic of a person with a hand raised is displayed.

What is jCell?: jCell is 1) a potential treatment for RP. 2) A cell therapy made from living cells. 3) Designed to help protect and possibly improve vision. 4) Gene-independent so that it may help all patients with RP. A graphic of a syringe delivering a treatment into the eye is shown in the top-right corner.

Hope for RP! jCyte, a California biotech company, is testing jCell, a new gene-independent cell therapy for all RP types. On April 22, 2025, jCyte announced they are recruiting adults with RP in Southern California for their JC02-88 trial. Learn more at www.jcyte.com/JC02-8....

Your story matters. Rare Genes. Usher Syndrome Coalition.

You’re in the doctor’s office: one diagnosis and your world shifts. Questions swirl: genetic testing, tech, white canes. It’s overwhelming! That’s why we launched Rare Genes - to remind you that others share this path. You are not alone. Your story matters. #UsherSyndrome #RareGenes

How can you confirm you have Usher syndrome? Genetic testing. Rare Genes, Usher Syndrome Coalition

When you get genetic testing, you're not just learning more about your health—you're also helping scientists work toward future treatments for everyone with Usher syndrome. Genetic testing is one of the key ways we can provide the information and data researchers need. www.usher-syndrome.o...

By signing up, you become part of a strong global network that supports research, connects the community, and helps speed up progress toward new treatments.
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That’s why genetic research and access to rare genes are more important than ever.

You can help scientists unlock the mysteries of our rare genes. Join the USH Trust—the largest international database of people with Usher syndrome.
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Since these changes don’t happen often, scientists need more research to understand them. The more we learn, the closer we get to new treatments and a better quality of life.

Studying rare genes can lead to important medical discoveries for the Usher syndrome community.
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Not all rare genes cause problems. Some changes can be helpful, like making a person resistant to certain diseases. But others, like those linked to Usher syndrome, can bring serious challenges.

Why do rare genes matter? Because they are hard to study, diagnose, and treat.
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These changes create diversity, but they can also cause health conditions.

For people with Usher syndrome, specific gene changes lead to combined hearing and vision loss, and even balance issues. These rare genetic changes affect how the body works and can have a big impact on daily life.
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Many people might say, "genes that are rare." That’s true, but there’s more to it. Are the genes themselves rare, or do the changes in these genes make them rare?

The second answer is correct. All humans share the same genes, but small genetic changes, called mutations, make each of us unique.
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What are rare genes? Many would say, "genes that are rare." That's true, but it is more than that! A graphic of DNA is centered below the text.

Rare genes = Rare genetic changes: All humans share the same genes, but small genetic changes, called mutations, make each of us unique. These changes create diversity, but they can also cause health conditions. A graphic of people in different shades representing genetic diversity is centered between the two sentences.

Do all rate genes cause problems?: No. Some rare genes can be helpful, like providing resistance to certain diseases. Other rare genes, like those linked to Usher syndrome, can bring serious challenges. A graphic of a person with DNA inside is centered on the banner.

Unlock the mysteries of our rare genes: Help scientists unlock the mysteries of our rare genes. Join the USH Trust, the largest global database of people with Usher syndrome. The USHTrust logo is displayed below the text.

Rare Genes: The Powerful Foundation of the Usher Syndrome Community

Two simple words—rare genes—bring the Usher syndrome community together. But what do they really mean, and why are they so important?

When you hear the phrase "rare genes," what do you think of?
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Rare Genes Usher Syndrome Coalition

You are not alone. Your Rare Genes are part of a global USH community. Rare Genes Usher Syndrome Coalition

Usher syndrome is more than a diagnosis. It's Rare Genes. Rare Genes Usher Syndrome Coalition

Your Rare Genes connect you to a global network - a powerful community bound together by shared experiences.

Rare Genes transforms a medical diagnosis into a movement, redefining what it means to be rare.
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A diagnosis can lead to more questions, difficult emotions, and uncertainty - but you are not alone. There is an entire community ready to support you. The Usher Syndrome Coalition is here to help you navigate the next steps.
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At its core, the genes related to Usher syndrome are Rare Genes.

But this name is also about reclaiming this diagnosis. Over the years, we've heard countless stories from the #USHCommunity about receiving the USH diagnosis - whether for themselves or a loved one - and what followed.
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We know the power of stories — they inform, connect, and support us. That's why we're sharing the story behind Rare Genes.

Part of the inspiration for Rare Genes came from our DNA itself. Usher syndrome is inherited through a rare genetic condition.
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This week, we're debuting the Rare Genes science education series, exploring genetics and Usher syndrome.

This is just the beginning - there's so much more in the works, and we can't wait to share it with you in the months ahead. Stay tuned!

#USHRareGenes is here!!

We are announcing the launch of Rare Genes, a campaign that reintroduces the Usher Syndrome Coalition, our initiatives, and our global community to those we have yet to meet.

Over the past month, we’ve shared teasers across our channels, and now it's time to dive in!

USH Talks: An Update on the Genetics, Genetic Counseling & Therapies. Dr. Govindasamy Kumaramanickavel, MD Director of Research Narayana Nethralaya Bangalore, India

Usher syndrome, the leading genetic cause of combined deafblindness, affects ~400,000 people worldwide. In this USH Talks episode, Dr. Kumaramanickavel discusses genetic counseling in India as well as advances in genetics and therapy. youtu.be/WmcQPOCBzAk...

10 questions today. A future of connections. Join the USH Trust. The USH logo is displayed at the bottom.

The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of individuals with Usher syndrome, and our most powerful tool to connect, inform, and support individuals in the USH community. Join the USH Trust and be the first to learn about the latest research and trials.

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Make sure you're on our mailing list to get our monthly "Grounded In Science" newsletter March 10! www.usher-syndrome.o...

The text "WORLD HEARING DAY" is displayed in bold, uppercase yellow letters at the center. Surrounding the text are curved yellow and white lines, symbolizing sound waves. At the bottom, there is a white circular USH logo in the center.

World Hearing Day 2025 highlights the importance of hearing and ear care. Hearing loss is one of three sensory impacts of Usher syndrome, and its progression varies across its three types. Up to 10% of individuals with congenital bilateral sensorineural hearing loss may have Usher syndrome.

Rare Disease Day, held on the last day of February, raises awareness of rare diseases like Usher syndrome, a genetic disorder affecting vision, hearing, and balance. With over 25,000 U.S. cases and 400,000 worldwide, this day highlights the importance of scientific research to the USH community.

Weekly USH Tip. Be My Eyes is a free app for the low vision and blind community that connects users with sighted assistance." White background with navy text. Header in all caps navy font on white and gold background. Photo of hands holding a phone on left with text on right. USH navy and gold circle logo bottom center.

The Be My Eyes app connects the blind/low-vision community with sighted volunteers via live video and AI to assist with directions, text reading, and more. Ray-Ban Meta glasses connect with the app, offering a hands-free experience through their camera and speakers. Explore: www.bemyeyes.com/

Graphic with yellow gold background. "Cochlear Implant Awareness Day" in navy blue text across the top. Three navy blue fine-line images of different cochlear implants in the middle. USH logo at bottom center.

Cochlear implants help people who are deaf hear sound by stimulating the cochlea to send sound signals to the brain through a behind-the-ear (BTE) device. Leading providers include Advanced Bionics, Cochlear, and MED-EL. For those with Usher syndrome, implants are a personal choice.

USH Ambassadors help grow the global Usher syndrome community by educating on Usher syndrome, the USH Trust, and working with local agencies. Many have a personal connection to USH. Dr. Jasmine Simmons, an audiologist and USH Ambassador, shares her inspiring story here: tinyurl.com/USHjs.

USH circle logo next to “MERCH. Rep the global USH Community.” Image of five different t-shirt design styles and colors. Yellow box at bottom with “USH Coalition Merch on Bonfire.”

Be the Change. Raise awareness for Usher syndrome and support the Coalition in connecting researchers with the USH community. Our store has a range of styles and designs, with a portion of each purchase going to the Coalition. Let’s amplify the USH community’s voice. tinyurl.com/USHbonfire

By promoting inclusion and advocating for Deaf and DeafBlind individuals, I strive to create a more understanding and accessible world where everyone, regardless of ability, can achieve their fullest potential. - Dr. Jasmine Simmons In the bottom left corner is a picture of Dr. Simmons, an African-American woman with braids and a big smile. The USH logo and a custom-colored cane shaped into the letter "J" are in the bottom right corner.

February is Low Vision Awareness Month. Today, we feature Dr. Jasmine Simmons, an advocate, author, audiologist, traveler, and accessibility consultant passionate about raising awareness for Usher syndrome. Learn of Jasmine's advocacy work and her children's book: www.drjasminesimmons...

Usher Syndrome Coalition: Balancing Life with Usher Syndrome Discover the journey of living with Usher Syndrome and how to find balance in life. Join Usher Syndrome Coalition for support and resources.

Big news for RP treatment! N-acetylcysteine amide (NACA) is a stronger, better-absorbed form of NAC that may help protect vision. Nacuity’s NPI-001, a special NACA formula, received FDA Fast Track & Orphan Drug status after promising early trial results! tinyurl.com/nacuity2...

"Weekly USH Tip. Flashlights are a multi-purpose tool. For walking in dim/dark places, looking for dropped objects, and more.” White background with navy text. Header in all caps navy font on white and gold background. Photo of a flashlight and beam on the left with text on the right. USH navy and gold circle logo bottom center.

Flashlights are affordable and versatile. They help navigate dark areas, find dropped items, and spot reflective signs. While phone flashlights work, they can quickly drain battery life. Flashlight features now include waterproofing, 180-degree wide beams, and adjustable color and brightness.