Usher Syndrome Coalition
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Usher Syndrome Coalition
@ushercoalition.bsky.social
56 followers 14 following 42 posts
A non-profit organization whose mission is to bridge the gap between researchers and the global Usher Syndrome community.

www.usher-syndrome.org
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ushercoalition.bsky.social
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...
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.
May 1, 2025 at 12:00 PM
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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.
"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.
April 30, 2025 at 12:00 PM
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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....
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.
April 29, 2025 at 12:00 PM
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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
Your story matters. Rare Genes. Usher Syndrome Coalition.
April 21, 2025 at 12:00 PM
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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...
How can you confirm you have Usher syndrome? Genetic testing. Rare Genes, Usher Syndrome Coalition
April 9, 2025 at 12:00 PM
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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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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.
April 4, 2025 at 8:07 PM
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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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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
April 3, 2025 at 12:00 PM
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#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!
April 2, 2025 at 8:11 PM
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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...
USH Talks: An Update on the Genetics, Genetic Counseling & Therapies. Dr. Govindasamy Kumaramanickavel, MD Director of Research Narayana Nethralaya Bangalore, India
March 27, 2025 at 12:00 PM
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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.
10 questions today. A future of connections. Join the USH Trust. The USH logo is displayed at the bottom.
March 17, 2025 at 12:00 PM
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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...
Graphic with yellow gold background and all text in navy blue font. “Grounded in Science. Monthly Newsletter. Sign up at link in bio.” Right side has three graphics with text to side. Image of papers and magnifying glass next to “Research Spotlight.” Image of megaphone next to “Science News Feature.” Image of side-facing head with a heart where brain is located next to “On Well-Being.” USH logo in blue and gold is at bottom center.
March 7, 2025 at 1:00 PM
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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.
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.
March 3, 2025 at 1:00 PM
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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/
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.
February 26, 2025 at 1:00 PM
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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.
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.
February 25, 2025 at 1:00 PM
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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
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.”
February 19, 2025 at 1:00 PM
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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...
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 17, 2025 at 1:00 PM
ushercoalition.bsky.social
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.
"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.
February 12, 2025 at 1:00 PM
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Today, we celebrate the brilliant women and girls in science! Their groundbreaking work in medicine, engineering, chemistry, and more has significantly impacted their fields. Check out this article that shares the historical stories of women and girls in STEM! obamawhitehouse.arch...
International Day of Women and Girls in Science. Illustration: A female dressed in a lab coat and safety glasses is pointing to a whiteboard with the message, "Celebrate the brilliant women and girls in chemistry, engineering, medicine, and more!" The USH logo is in the bottom left corner.
February 11, 2025 at 1:00 PM
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Discover how NAC, an FDA-approved oral antioxidant used to treat acetaminophen overdose, may help slow vision loss from RP. Sponsored by the Wilmer Eye Institute, Johns Hopkins University, this phase III trial is now recruiting participants. USH Talk: youtu.be/xufgBOC1zJg...
USH Talks: NAC Attack Clinical Trial for Retinitis Pigmentosa (RP). Speaker: Susie Trotochaud, Executive Director, Usher 2020 Foundation A picture of Susie, a white female with shoulder-length auburn hair, is in the bottom left corner, and the USH logo is in the bottom right corner.
February 7, 2025 at 3:17 PM
ushercoalition.bsky.social
Tinnitus Awareness Week is February 3-9, 2025. Tinnitus causes ringing, buzzing, or humming in one or both ears, only heard by the individual, and can be a sign of hearing loss. While there's no cure, management strategies can help. What helps you manage tinnitus?
Graphic with navy blue background. Dark font in a white bubble at the top reads “Feb 3-9, 2025” above large white font that reads “Tinnitus Awareness Week.” Graphic of a person frowning with hands over ears and emitting sound waves. The white USH logo is at the bottom left.
February 4, 2025 at 11:46 PM
ushercoalition.bsky.social
February is Low Vision Awareness Month. Retinitis pigmentosa, a key component of Usher syndrome, causes symptoms like tunnel vision, night blindness, and blurry vision. Tools like braille, guide dogs, and screen readers aid independence. More awareness will lead to better design and inclusivity.
Graphic with yellow gold background. Text in bold navy blue "Low Vision Awareness Month." Tunnel vision effect around text in blue and gold. USH logo at bottom center.
February 1, 2025 at 1:00 PM
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Gung Hei Fat Choi. San Nin Fai Lok! (We wish you happiness and prosperity. Happy New Year!)

Happy Chinese New Year! 2025 is the Year of the Snake, the sixth animal in the Chinese zodiac. Representing the wood element, this year's wood snake symbolizes adaptability, charisma, intuition, and growth.
Navy blue graphic with a large red snake graphic on the left that has a white outline on one side. Bold white text on the right reads “Happy Chinese New Year!” Below is a white pill shape that reads “Year of the Snake” in navy font. The USH logo is at the bottom center.
January 29, 2025 at 1:00 PM
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Remember the wisdom of Martin Luther King, Jr. on equality, community, and civil rights, not just today but every day.

#MLKLegacy #EqualityNow #SocialJustice #MLKDay #UsherSyndrome
Black background with navy blue gradient in bottom right corner. Quote in center in white text that reads: "Darkness cannot drive out darkness, only light can do that. Hate cannot drive out hate, only love can do that." The words "light" and "love" are in gold yellow font color. The USH logo is at the bottom center.
January 20, 2025 at 1:00 PM
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Join Margaret Kenna, MD, MPH, in this USH Talks as she updates the phenotype-genotype presentation of Usher syndrome, including atypical and Type 4 forms. Learn about new candidate genes and those linked to deaf-blindness outside of the clinical USH definition. Watch Now: youtu.be/V6dDph6pCao...
USH Talks: Atypical Usher Syndrome or Usher Syndrome Type 4: Do they even exist? Speaker: Margaret Kenna, MD, MPH Professor, Harvard Medical School Boston Children's Hospital
January 16, 2025 at 1:00 PM
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In this episode of USH Talks, Dr. Jennifer Lentz, Professor of Biocommunications, Ophthalmology, and Genetics at LSU Health, provides an overview of Usher syndrome and shares the latest research updates, including findings from her lab.

Watch Now: youtu.be/bEKsj9OeNpI...

#USHTalks #UsherSyndrome
January 7, 2025 at 1:00 PM