iiinova — where your digital self keeps evolving

Usher Syndrome Ireland @usherireland.org · 28/09/2026

We’re delighted to have been chosen to be part of Tesco Community Fund at Tesco Wexford between now & beginning of December. The more tokens we receive, the greater our share of the Community Fund which will be used to support our community facing both hearing & progressive vision loss. #Speirgorm

A hand holding a Tesco blue token. Text reads: “Tesco Community Fund. Please use your recyclable blue token to vote for Usher Syndrome Ireland at Tesco Wexford.”

A photo from Tesco Wexford showing the blue token collection point, with Usher Syndrome Ireland listed on the left, with the following text on display for voters, “"Usher Syndrome Ireland. Usher Syndrome Ireland supports people in our community who are living with Usher syndrome, a rare condition causing combined hearing and vision loss. The Community Funds will help us provide peer support, accessible information, and advocacy for individuals and families who are often isolated and overlooked."

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Usher Syndrome Ireland @usherireland.org · 19/09/2026

On Usher Syndrome Awareness Day we are sharing some of the realities of living with Usher syndrome from people who know it first-hand. We want to remind you we are here to listen, help, cheer & support you and your family every step of the way. 💚 #RareDisease #UsherSyndromeAwarenessDay #Speirgorm

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Usher Syndrome Ireland @usherireland.org · 17/09/2026

🎉We're delighted to welcome Dr Noor Al-Saffar as the new Research Officer for Usher Syndrome Ireland. She says she is excited to "work with USI and supporting the charity’s already brilliant work while exploring the role we can play in advancing care, namely through building a patient registry." 🦓

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Usher Syndrome Ireland @usherireland.org · 27/08/2026

Do you or a family member have Usher syndrome and live in Ireland/Northern Ireland? Please help us by completing this form: tinyurl.com/MappingUSH - more info in the form and your response will help us greatly. #UsherSyndrome

Image description: Dublin city at dusk, overlooking the River Liffey. The image includes a caption that reads, “We need your help. It’s really urgent.”

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Usher Syndrome Ireland @usherireland.org · 24/08/2026

Massive congrats to David who completed the Antrim Coast Half Marathon yesterday! We're so grateful to David for taking on the challenge & HUGE thank you to everyone who supported him. Want to raise fund? Get in touch & we’ll help you find an event. And yes… there’s a FREE t-shirt in it for you!

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Usher Syndrome Ireland @usherireland.org · 18/08/2026

Yaay! USH Meetups returns on Thursday, 27th August at 7:30pm. This is a friendly, online get-together for anyone impacted by Usher syndrome in Ireland & Northern Ireland providing a chance for anyone in our small community to meet others to simply chat, connect, and share experiences.

features an image in the background of a woman engaging with several people in an online meeting. Overlaid text reads “USH Meetups, 27th August at 7:30pm.”

background image features a laptop in the background. Overlaid text in a box reads “USH meet ups, online get-together via Zoom for anybody impacted by Usher syndrome in Ireland & Northern Ireland. Because our community is small and spread out, it’s not always easy to meet others. This online meet-up is a chance to connect, have a chat and share experiences with others in the community.”

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Usher Syndrome Ireland @usherireland.org · 13/08/2026

A HUGE thank you to David as he steps down as trustee after 3.5 yrs. We’re delighted, however, that this isn’t a complete goodbye as David will continue to be involved by joining us at events & supporting us as a volunteer. Would you like to join us as a trustee? Drop us a DM #Speirgorm

A collage of photos of David from his time as a trustee, with the words “Thank You” overlaid on the image.

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Usher Syndrome Ireland @usherireland.org · 22/07/2026

Do you have a child/young adult with Usher syndrome and live in Ireland or Northern Ireland? If yes, please join the USH Connect Parents Network and help us to build a powerful community today: tinyurl.com/USHParentsNe... #UsherSyndrome #RareDisease #community

Image in background shows a man and a woman each holding a child on their shoulders. Their backs are turned to the camera. Text reads “Join the USH Connect Parents Network”

Text reads “Why join? Receive relevant information and available supports; Connect with other families; Attend in-person meetups, events and webinars; Connect one-to-one with the group admin - also an USH parent - for information, support and shared experience.”. Image in background shows a man and a woman each holding a child on their shoulders. Their backs are turned to the camera.

Text reads “Build a community of USH Parents. You'll also be helping to build a powerful community of parents and carers of children and young people with Usher syndrome across Ireland. The bigger our community, the stronger our voice and our ability to create a positive change for every child and young person with Usher syndrome.”. Image in background shows a man and a woman each holding a child on their shoulders. Their backs are turned to the camera.

Text reads “How to join? Link:https://tinyurl.com/USHParentsNetwork” QR code underneath. Text “Got any questions, email us at contact@usherireland.org”. Image in background shows a man and a woman each holding a child on their shoulders. Their backs are turned to the camera.

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Usher Syndrome Ireland @usherireland.org · 14/07/2026

We need your help! Do you live with dual sensory loss, or care for someone who does? We want to hear about your healthcare experiences. Please get in touch with Carol Murphy at c.murphy@usherireland.org #DualSensoryLoss #DeafBlind #Speirgorm #Ireland

shows a poster titled "Have you had an experience with healthcare?" inviting people living in Ireland who are deafblind, have dual sensory loss, or support someone who does, to share their experiences of healthcare. It explains that feedback on topics such as healthcare appointments, understanding health information, medication, asking questions, accessible information, and navigating health services will help improve healthcare information and resources for deafblind people in Ireland. People are invited to contact Carol Murphy
at c.murphy@usherireland.org by 15 July 2026. The poster also notes that accessible communication supports are available. Logos for Usher Syndrome Ireland, Anne Sullivan Foundation, Adult Literacy for Life (ALL), SOLAS, and the European Union appear at the bottom.

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Usher Syndrome Ireland @usherireland.org · 13/05/2026

Have you ever felt frustrated trying to get past an abandoned e-scooter or a car blocking the footpath? Om Make Way Day (Fri 29th May), people across the country are encouraged to share photos of obstacles in their area to help raise awareness. #Accessibility #SpeirGorm #MakeWayDay26

An abandoned e-scooter lies across a footpath, creating an obstacle for pedestrians. Overlay text reads: “What looks harmless to you can be dangerous to someone else”.

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Usher Syndrome Ireland @usherireland.org · 16/04/2026

#Speirgorm please share. A simple idea with BIG impact: fundraising in schools, campuses, & workplaces. Huge thanks to Coláiste Bhríde where students & staff raised funds by collecting bottles & cans supporting people with combined sight & hearing loss. Learn more: usherireland.org/deposit-retu...

A student and a teacher stand in a school hallway holding a large cheque for €200 made out to Usher Syndrome Ireland, marking funds raised through a recycling fundraiser.

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Usher Syndrome Ireland @usherireland.org · 08/04/2026

“I’ve never heard of Usher syndrome - can you explain what it is to me?” This is still happening in healthcare. We’re working to change that. Get in touch for a free HCP USH Awareness Pack (Ireland & Northern Ireland). We also offer talks & training. #UsherSyndrome #HealthcareAwareness #SpeirGorm

A cut-out image showing the contents of the USH Awareness Pack, including leaflets, booklets, glasses, stickers, and QR cards. Above the image is the text: “I’ve never heard of Usher syndrome - can you explain what it is to me?”

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Usher Syndrome Ireland @usherireland.org · 01/04/2026

Last Saturday, we were delighted to attend University College of Dublin for RAINFEST 2026 & to meet with others in this rare disease space. Carol, Chair of USI, presented her poster on the findings of a scoping study examining the feasibility of an USH patient registry. #UsherSyndrome #UCD

Carol Brill is standing to the left of a research poster on display. She has short blonde hair and is wearing an Usher Syndrome Ireland t-shirt. The title of the poster is “Voices Rarely Heard: Patient-Led Research Readiness in Usher Syndrome”.

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Usher Syndrome Ireland @usherireland.org · 19/03/2026

Enjoy running half marathons? Then check this out - Antrim Coast Half Marathon - voted 21st out of 526 road running events GLOBALLY! & the good news is we’ve got free charity places for anyone who runs for us! Funds raised goes to USH research 💚 🔗: usherireland.org/antrim-coast... #Speirgorm

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Usher Syndrome Ireland @usherireland.org · 10/03/2026

Live in Ireland and have Usher syndrome, or perhaps a family member does? Then come along to our next USH Meetup, via Zoom, on Thurs, 26th March for a friendly chat with others in the community. Sign up here: 040dd814.sibforms.com/serve/MUIFAD... #SpeirGorm #UsherSyndrome #Ireland

A smiling woman wearing glasses is using a laptop on a table. Caption reads, “USH Meetups • 26 March • 7:30pm • Online. There is a QR code next to the text.

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Usher Syndrome Ireland @usherireland.org · 03/03/2026

Today is World Hearing Day. Usher syndrome can impact hearing in different ways, depending on the type a person has. Many people with Usher syndrome use hearing aids, over-the-ear cochlear implants, or off-the-ear cochlear implants to access sound and speech. #WorldHearingDay

Caption reads “World Hearing Day, 03 March 2026” with four blue circles above it. Each circle contains an icon: an over-the-ear cochlear implant, a hearing aid, an off-the-ear cochlear implant, and an ear.

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Usher Syndrome Ireland @usherireland.org · 28/02/2026

Usher syndrome is a rare genetic condition that affects both hearing and vision, and is the leading genetic cause of dual sensory loss. It can also impact balance and has different types, where the age of onset and progression can vary. You can learn more at www.usherireland.org #RareDiseaseDay

An outline illustration of a toddler wearing hearing aids. Text on the image reads, “Usher syndrome is a rare progressive condition that affects both hearing and vision, and sometimes balance.”

An image of a woman wearing an off-the-ear cochlear implant. Text on the image reads, “Usher syndrome is the leading genetic cause of dual sensory loss.”. There is a QR code with the text learn more at usherireland.org.

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Usher Syndrome Ireland @usherireland.org · 28/02/2026

Rare Disease Day, a moment to raise awareness & stand in solidarity with 300 million people worldwide living with a rare condition. It highlights the importance of connection, understanding, & continued progress in research & support for RD communities, including those living with Usher syndrome.

A cartoon illustration of the Earth with text wrapped around it that reads, “More than 300 million people worldwide live with a rare disease.” The caption on the image says, “Today is Rare Disease Day.”

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Usher Syndrome Ireland @usherireland.org · 28/01/2026

Have Usher syndrome or know someone who does? USH Connect 2026, Sat, 19th Sept is the only event in Ireland dedicated for this community playing an important role in fostering connection, shared learning, & peer support. Sign up to stay updated: tinyurl.com/SignUpToUSI #Speirgorm #UsherSyndrome

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Usher Syndrome Ireland @usherireland.org · 21/01/2026

Looking for updates, opportunities to connect, and the latest Usher syndrome news? Our January newsletter is landing tomorrow and is full of community updates, research highlights, and ways to get involved this year. Not on our mailing list yet? Sign up here: tinyurl.com/SignUpToUSI #UsherSyndrome

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Usher Syndrome Ireland @usherireland.org · 19/01/2026

Super news! 🎉 Usher Syndrome Ireland has free charity places for the Antrim Coast Half Marathon - voted one of the world’s best runs! Click below to find out more. #Ireland #SpeirGorm #NorthernIreland #IrelandRun #RunForACause 🔗 usherireland.org/antrim-coast...

Photograph of runners at the starting line of the Antrim Coast Half Marathon. Overlaid text reads: “Run for USH” A speech bubble over the text includes an eye emoji and an ear emoji, representing sight and hearing.

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Usher Syndrome Ireland @usherireland.org · 14/01/2026

🎉 We’re delighted to welcome Solomon as our newest Trustee (Director). Solomon brings both professional + lived experience to our board. Alongside his clinical work in healthcare, he has experience in research, education, + working with patient organisations. #UsherSyndrome #RareDisease

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Usher Syndrome Ireland @usherireland.org · 14/01/2026

USH Meetups - bringing our Usher syndrome community together, wherever you live in Ireland. 📅 Our first meetup is Thursday, 29th January at 7:30pm. For more info and to receive your Zoom link: 040dd814.sibforms.com/serve/MUIFAD... #UsherSyndrome

A four-panel image. Two panels show the same image from different angles of a laptop open on a table, with several people visible on the screen taking part in an online chat. One panel contains the text “USH Meetups”, and another reads “A new relaxed space to connect with others in Ireland • 29 Jan • 7:30pm • Online.” A QR code appears beneath the text.

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Usher Syndrome Ireland @usherireland.org · 18/12/2025

🎄A Christmas message from the Usher Syndrome Ireland team to our community and supporters. Thank you for being part of it, and we wish you a very happy Christmas. We look forward to an exciting 2026 ahead. ✨ #UsherSyndrome #ThankYou #SpeirGorm #Ireland

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Usher Syndrome Ireland @usherireland.org · 16/12/2025

Living with Usher syndrome or another IRD? @retinaint.bsky.social would like you to take part in a survey to understand how vision loss impacts mental health & daily life: Irish Patient Survey: 74pcq.r.sp1-brevo.net/mk/cl/f/sh/O... Caregiver & Family Member: 74pcq.r.sp1-brevo.net/mk/cl/f/sh/O...

A close-up of the upper half of a small wooden figure. Two Post-it notes are placed on its head: one with a smiley face and one with a sad face. Above the figure is a caption that reads, “Share your experience.”

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Usher Syndrome Ireland @usherireland.org · 03/12/2025

What a fantastic and enjoyable fundraiser with the always entertaining Roof Rabbits! Aren’t they just brilliant? Thank you so much for your support.💚 With the help of a special raffle, an incredible €920 was raised for Usher Syndrome Ireland. #Speirgorm #UsherSyndrome #Fundraiser #TogetherWeCan

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Usher Syndrome Ireland @usherireland.org · 13/11/2025

On Charities Trustees' Week, we want to say a very BIG thank you to our trustees. Our amazing trustees are volunteers driven by one goal: to improve the lives of individuals and families living with Usher syndrome - a rare, progressive condition that causes both vision and hearing loss. 💚

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Usher Syndrome Ireland @usherireland.org · 23/10/2025

Updates that matter - Connecting patients, researchers, and organisations in the Usher community. Sign up today: tinyurl.com/SignUpToUSI #UsherSyndrome #RareDisease #HearingLoss #RetinitisPigmentosa #BlindnessAwareness #NonProfit #PatientAdvocacy #SpeirGorm #Ireland

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Usher Syndrome Ireland @usherireland.org · 20/10/2025

This week is Invisible Disabilities Week, and we are asking you to share: What invisible challenges do you wish others could understand better? Let us know in the comments below. #SeeTheInvisible #SeeUSH #UsherSyndrome #HearingLoss #RP #RetinitisPigmentosa #BlindnessAwarenessMonth #SpeirGorm

A woman wearing a jumper is covering her eyes with her hands. There is a pair of hands also covering her ears. Caption in image reads, Invisible Disabilities Week.

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Usher Syndrome Ireland @usherireland.org · 07/10/2025

Ever wondered what vision loss from Usher syndrome looks like? Our simulation glasses are helping people experience it & they look great in action during a recent Hackathon as part of the INCLUDE Deafblind Project, led by SMARTlab at UCD & The Anne Sullivan Foundation. 👀: www.ucd.ie/smartlab/new...

Three people are sitting at a table in a meeting room. They are wearing green Usher syndrome/RP simulation glasses produced by Usher Syndrome Ireland. Photo credit to SMARTlab-IDRC at UCD, funded by the UCD Research Office via PPI Ignite.

A group photo of 14 adults and one toddler posing cheerfully for the photo. Three people have canes placed in front of them.

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Usher Syndrome Ireland @usherireland.org · 05/10/2025

A big thank you to the Irish Society of Hearing Aid Audiologists (ISHAA) for inviting us to speak & have a stand at their recent conference. We’re pleased to see growing awareness & understanding of Usher syndrome within the audiology community! #UsherSyndrome #Audiology #Accessibility #Healthcare

ID: A table with a display stand placed behind it. On the table are various items including boxes, paper bags, leaflets, and simulation glasses. The table is covered with a tablecloth that has several icons of eyes and ears with the caption 'Are you Usher Aware?' in a circle. The display stand contains similar images and text.

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Usher Syndrome Ireland @usherireland.org · 22/09/2025

We’re proud to share the results of our second major research project!🎉 This landmark scoping study identifies the data and model needed to lay the groundwork for a successful, sustainable Usher syndrome registry in Ireland. 🔗: usherireland.org/ush-registry... #RareDisease #PatientRegistry

ID: Text in image reads “A landmark report on data collection for Usher syndrome. Our new report identifies the challenges and potential solutions needed to create an Usher syndrome registry that supports access to future treatments and clinical trials, while improving services in healthcare, education, mental health, employment, and accessibility.”. Underneath is an outline of a group of people standing in front of buildings.

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Usher Syndrome Ireland @usherireland.org · 19/09/2025

(continued) The different types of Usher syndrome - do you know them all? Follow along & share to help spread awareness for #USHDay2025. 🩷 #UsherSyndrome #USH1 #USH2 #USH3 #USH4 #RareDisease #Genetics #DNA #Mutations

Slide describes Usher Syndrome Type 3 with subtypes and genetic mutation: USH3A (CLRN1), USH3B (HARS). Symptoms: Normal hearing at birth, progressive hearing loss typically begins during adolescence. Vision loss begins during early adulthood leading to severe vision loss by mid-life. Balance issues can vary.

Slide describes Usher Syndrome Type 4 with subtype and genetic mutation USH4 (ARSG). Symptoms: Normal hearing at birth, progressive hearing loss is typical during adulthood. Vision loss begins during adulthood. No known issues with balance. *USH4 is a recently discovered type with more research needed to learn more about this type.

Cut-out of child in a superman costume shouting into a megaphone. Text, “Repost. Follow. Spread USH awareness by reposting the slide with your type! We’ll continue our deep dive into Usher syndrome as we approach #USHDay2025 this Saturday, 20th September.”

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Usher Syndrome Ireland @usherireland.org · 19/09/2025

The different types of Usher syndrome - do you know them all? Follow along & share to help spread awareness for #USHDay2025. 🩷 #UsherSyndrome #USH1 #USH2 #USH3 #USH4 #RareDisease #Genetics #DNA #Mutations

Types of Usher Syndrome. A cut-out of a hand holding a DNA gene between the finger and thumb.

Text “Usher syndrome comes in 4 types & each type has its own subtypes! Why? Because each subtype is tied to a different gene mutation that causes Usher syndrome. Note: Type 4 is newly identified.”.

Slide describes Usher Syndrome Type 1 with subtypes and genetic mutation USH1B (MYO7A), USH1C (USH1C), USH1D (CDH23), USH1f(PDH15), USH1G(SANS), USH1J (CIB2). Symptoms: Profound loss (little to no hearing) at birth. Decreased night vision becomes apparent during late childhood & progresses to severe vision loss by mid-life. Issues with balance tends to be present at birth.

Slide describes Usher Syndrome Type 2 with subtypes and genetic mutation: USH2A (USH2A), USH2C (ADGRV), USH2D (WHRN). Symptoms: Mild-severe hearing loss at birth, some may experience progressive loss during adulthood. Decreased night vision becomes apparent during late teens & progresses to severe vision loss by mid-life. No issues with balance.

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Usher Syndrome Ireland @usherireland.org · 15/09/2025

(2/2) Are there other symptoms in Usher syndrome? Let’s explore what researchers are asking! Have you experienced any of these? #UsherSyndrome #RareDisease

Text reads “Does Usher syndrome also affect the sense of smell? Some studies suggest it might, though more research is needed.”. Underneath the text is a cut-out of a woman holding flowers close to her nose.

Text reads “Sometimes the main symptoms of Usher syndrome leads to secondary conditions like cystoid macular edema, cataracts, headaches, or low mood. These aren’t direct symptoms, but they can arise as part of the bigger picture of living with Usher syndrome.”. Several icons of eye drops, headache, and low mood can be seen.

Text reads “Help spread USH awareness by reposting & following us. We’ll continue our deep dive into Usher syndrome, its symptoms & more in the lead-up to #USHDay2025 on 20th September.”

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Usher Syndrome Ireland @usherireland.org · 15/09/2025

Are there other symptoms in Usher syndrome? Let’s explore what researchers are asking! Have you experienced any of these? Part 2 in comments below. #UsherSyndrome #RareDisease

A man wearing glasses is looking up in a thinking manner. Text reads “Are there other symptoms in Usher syndrome? “.

Icons of question marks, nose, and hand can be seen. An outline of researchers in a lab posing for a photo. Text reads “Some researchers think Usher syndrome may affect more than hearing, vision, and balance. However, with research still limited, links to other symptoms remain unproven.”.

Text reads “Many with Usher syndrome report fatigue and sleep problems. While extra effort from hearing and vision loss plays a role, new research suggests USH may also affect how the brain regulates sleep. “. Underneath the text is a cut-out of a woman rubbing her eyes beneath her glasses.

Text reads “Some research suggests that some people with Usher syndrome may experience reduced touch sensitivity. This theory has still yet to be confirmed.”. Underneath the text are outlines of several hands raised up.

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Usher Syndrome Ireland @usherireland.org · 12/09/2025

Thrilled to share exciting news from Nacuity Pharmaceuticals. This approach is expected to work regardless of the USH type. For the first time, we may be looking at a treatment that can help slow vision loss while we continue to wait for a cure. #UsherSyndrome 🔗 www.nacuity.com/news/nacuity...

In quote box "NPI-001 shows more than 50% reduction in photoreceptor loss caused by RP associated with USH over two years". Text underneath reads "Nacuity Pharmaceuticals Announces Positive Data from Clinical Trial Evaluating NPI-001 to Treat Retinitis Pigmentosa Associated with Usher Syndrome"

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Usher Syndrome Ireland @usherireland.org · 11/09/2025

What happens to balance in Usher syndrome? Let’s find out what keeps us steady! Follow along & share to help spread awareness of this rare condition impacting only approx 250 people in Ireland. 💚 #UsherSyndrome #Balance #Vestilbular #RareDisease #USHDay2025 #SpeirGorm

A cut-out of a young toddler walking. Text reads “What happens to balance in Usher syndrome? “.

A image of a toddler walking, appearing unsteady and holding on to an adult behind them, towards a sofa with an adult behind them. Text reads “The vestibular system helps us maintain balance. It includes the semicircular canals in the inner ear, which detect movement. Tiny hair cells and fluid in the canals send signals to the brain, helping us stay steady.”

Text reads “In USH1, the tiny hair cells in the vestibular system are often compromised at birth. This can cause delays in sitting, crawling, or walking in children. The vestibular system also works with the eyes to maintain balance. As vision loss progresses, balance difficulties may become more noticeable.”. Underneath is a cut-out of a woman with one hand outstretched and the other on her head as she appears unsteady.

Text in circle reads “Not everyone with Usher syndrome has balance problems. Many people adapt naturally over time. Babies and young children with USH1 may benefit from physiotherapy or vestibular rehabilitation.”. Behind the circle are several icons representing balance.

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Usher Syndrome Ireland @usherireland.org · 04/09/2025

(Post 2/2) What happens to vision in Usher syndrome? Let’s take a look in today’s post! Follow along & share to help spread awareness. 🩷 #USDay2025 #UsherSyndrome #UsherSyndromeAwarenessDay #RareDisease #RP #RetinitisPigmentosa

Text “Vision loss is part of all types of Usher syndrome. When it starts and how it progresses can depend on the type and even then, it’s different for each person, even within the same USH subtype. Everyone’s experience with vision loss is unique. A range of tools, technology, and supports can help, depending on individual needs.”. Text is in a circle on a background showing icons of guide dog, canes, braille, mobile phones with magnifiers.

Text “Repost. Follow. Help spread USH awareness by reposting and following us. We’ll be diving deeper into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September.”. A cut-out of a man making a heart shape with his hands.

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Usher Syndrome Ireland @usherireland.org · 04/09/2025

What happens to vision in Usher syndrome? Let’s take a look in today’s post! Follow along & share to help spread awareness. 🩷 (Post1/2) #USDay2025 #UsherSyndrome #UsherSyndromeAwarenessDay #RareDisease #RP #RetinitisPigmentosa

Text “What happens to vision in Usher syndrome?”. A cut-out of a woman holding two fingers on one eye.

Text “At the back of the eye is the retina. It’s lined with millions of light-sensitive cells known as rods and cones. Rods help us see in dim light. It also gives us peripheral vision. Cones help us see colour, detail, and depth in bright light.” An anatomy of an eye highlights the retina and icons of a rod and cone.

Text “Retinitis pigmentosa (RP), a symptom of Usher syndrome, is an eye-condition where these rod and cone cells slowly die. Rods are usually affected first leading to poor night vision and tunnel vision. This is why night-blindness is often the first sign of RP.”. A cut-out of a woman appearing to have an ‘aha’ moment.

Text “The fovea lies at the centre of the retina and is densely packed with cone cells. While rods degenerate first, cones often stay intact until later helping preserve central vision. This is why many people with Usher syndrome keep useful central vision for reading, colour, and detail well into the later stages.”. Several icons of cones are seen.

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Usher Syndrome Ireland @usherireland.org · 02/09/2025

(2/2) What happens to hearing in Usher syndrome?

In the background are several icons of hearing aids, both bte and ote processors (for cochlear implants) and hands signing. Text in circle at front reads “Some people use hearing aids to access sounds and speech. Cochlear implants can also support access to sound and speech when hearing loss is severe. For others, sign language is a primary and preferred way to communicate.”.

A cutout of a girl and a boy looking through their hands making a heart shape. Text in text box reads, “Repost. Follow. Help spread USH awareness by reposting and following us. We’ll be diving deeper into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September.”.

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Usher Syndrome Ireland @usherireland.org · 02/09/2025

What happens to hearing in Usher syndrome? Dyk: Usher syndrome is the leading genetic cause for deafblindness, yet people with this condition have normal vision at birth! (1/2) #RareDisease #Speirgorm #HearingLoss #Deaf #USHDay2025

A cut-out of a girl wearing a cochlear implant. Text in image reads, “What happens to hearing in Usher syndrome?”.

Text on the top reads “Inside the inner ear is the cochlea.” and “It’s filled with thousands of tiny hair cells.” with an outline of a cochlea in between. Below is a speech bubble with text “These cells turn sound into signals the brain understands and hear.” and a cut-out of a man listening with a hand behind his ear.

Text in image reads “In Usher syndrome, many of these tiny hair cells are damaged from birth or over time. This is called sensorineural hearing loss. The more damage, the greater the hearing loss.”. Below is a graphic of healthy and damaged hair cells.

In text boxes the following text “Some people are born with little to no hearing (often in USH type 1). Some people are born with mild to severe hearing loss (often in USH type 2). Some people are born with no hearing loss (often in USH type 3 & 4). For some with USH type 2 and for all those with types 3 & 4, hearing loss is progressive.”.

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Usher Syndrome Ireland @usherireland.org · 28/08/2025

Do you know what is Usher syndrome? Here’s a simple intro to get you started! Over the next few weeks, we’ll take a deeper dive into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September. Follow along & share to help spread awareness. 💛 #RareDisease #SpeirGorm #Awareness

A cut-out of a young girl looking through her hands making a heart shape above a text box. Text in the text box reads, “Repost. Follow. Help spread USH awareness by reposting and following us. We’ll be diving deeper into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September.”.

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Usher Syndrome Ireland @usherireland.org · 28/08/2025

A cut-out of a boy looking through a magnifying glass with one eye. Text reads, “What is Usher Syndrome?”

A background wallpaper of several eyes, ears, and person icons. Text in image reads, “Hearing loss - mild to profound, at birth or later”, “vision loss - normal at birth, progressive loss leads to night-blindness & tunnel vision” and “balance - some, but not all, experience issues with balance” . There is a plus symbol in between each text box.

Above an image of the earth, text reads, “How Rare? Estimated around 12,000 babies are born with Usher syndrome each year. Possibly up to 700,000 people worldwide are living with USH.”

Alongside several icons of DNA strands, text reads, “Currently, there are four types of Usher syndrome with many subtypes. Each type is usually distinguished by the severity of hearing loss at birth & onset of vision loss. Only genetic testing can confirm Usher syndrome.”

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Usher Syndrome Ireland @usherireland.org · 13/08/2025

Exciting opportunity for teens with Usher syndrome - free Robotics Coding Workshop will take place at TCD where teens can learn coding, connect & have fun with peers in a friendly, supportive environment. For more info, email Dr Katie O’Connor: oconnk33@tcd.ie #UsherSyndrome #Coding #UsherKids

Text in image, 'Vision Code Robotics Workshop, Date: 28th August, 11am to 1pm. Venue: TCD Priniting House, An Mheitheal room. For more information, email Dr Katie O Connor at oconnk33@tcd.ie.'. A picture of a robotic with wiring, eyes, and wheels.

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Usher Syndrome Ireland @usherireland.org · 24/07/2025

Our recap of #USH2025 - International Symposium on Usher Syndrome is now live, highlighting the exciting research & innovative work currently underway to find treatments for this rare disease: usherireland.org/ush2025 #UsherSyndrome #Genetics #IRD #Research #IRDs #HearingLoss #RP

A collage of six images: five young adults from the youth panel sitting on stage with the USH2025 screen behind them; the Congrestival programme resting on someone’s lap; Carol and Deborah, founders of Usher Syndrome Ireland, standing side by side in front of a stage; a photo from the Can I Catch Your Eye exhibition; Prof Ronald Pennings, Dr Erwin van Wijk, and Carol Brill in front of a research poster; and a graph showing the number of Usher syndrome research publications from 1936 to 2021, with a sharp increase in recent years. Centre caption reads: “USH2025 – What We Learned.”

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Usher Syndrome Ireland @usherireland.org · 15/07/2025

Ready to gain a fresh perspective & the benefits our previous client experienced? More info & sign-up form: forms.gle/Juu4mabKfatH... This initiative is supported by @amgen.bsky.social ’s 2024 #RareIs grant. It’s open to anyone over 16 living in Ireland who has a connection to Usher syndrome.

ID: Text overlay on a faded image of a woman speaking to another woman on a computer. The text reads, “Empower USH – Personal Coaching for Confidence. Working with life coach Miriam has been so helpful to me. I was able to clarify a lot of my anxieties and Miriam helped me to approach these issues with a new perspective which means I approach problems with positivity. I feel so much better mentally and physically. Thanks so much to Miriam and thanks to Usher Syndrome Ireland for providing this service. Client Testimonial.”

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Usher Syndrome Ireland @usherireland.org · 09/07/2025

📢 Calling all healthcare professionals in Ireland! Learn more about Usher syndrome by availing of a free resource pack sent to your clinic by emailing the address to contact@usherireland.org You can explore everything inside & watch our animation video here: usherireland.org/are-you-ushe...

Caption, "USH Awareness Packs for Healthcare Professionals". A cut-out image displays items from the pack, including a booklet on understanding Usher syndrome, a leaflet for patients, “See Like USH” simulation glasses, ear plugs, leaflets on enhancing patient experience in clinical settings, and a card with a QR code linking to an animation video.

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Usher Syndrome Ireland @usherireland.org · 02/07/2025

🌟 From the bottom of our hearts – thank you Grace 🌟 Grace recently took on the Belfast Marathon in support of Usher Syndrome Ireland, raising an incredible €1,244.91. We are ever so grateful to Grace, and to supporters like her who help raise much-needed funds to help keep our work going. 💚

Image two – Grace stands alone, smiling proudly as she holds up her medal.

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Usher Syndrome Ireland @usherireland.org · 27/06/2025

Today is the 1st ever UN-recognised International Day of Deafblindness. According to stats shared at USH2025 in the NL, it’s believed over 700,000 pple globally are living with Usher syndrome - the leading genetic cause of deafblindness - with around 12,000 babies born each year with USH globally.

Shows a collection of striking individual black and white portraits of several individuals on stands in a church.

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