Usher Syndrome Ireland

@usherireland

Supporting individuals & families living with Usher syndrome, a condition causing progressive hearing & sight loss. We also raise awareness & fund research. RCN:20206288 www.usherireland.org Donate:

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Usher Syndrome Ireland@usherireland· 4d

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.”

Usher Syndrome Ireland@usherireland· 9d

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.

Usher Syndrome Ireland@usherireland· Jul 22

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.

Usher Syndrome Ireland@usherireland· Jul 14

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.

Usher Syndrome Ireland@usherireland· May 13

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”.

Usher Syndrome Ireland@usherireland· Apr 16

#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.

Usher Syndrome Ireland@usherireland· Apr 8

“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?”

Usher Syndrome Ireland@usherireland· Apr 1

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”.

Usher Syndrome Ireland@usherireland· Mar 19

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

Usher Syndrome Ireland@usherireland· Mar 10

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.

Usher Syndrome Ireland@usherireland· Mar 3

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.

Usher Syndrome Ireland@usherireland· Feb 28

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.

Usher Syndrome Ireland@usherireland· Feb 28

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.”

Usher Syndrome Ireland@usherireland· Jan 28

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

Usher Syndrome Ireland@usherireland· Jan 21

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

Usher Syndrome Ireland@usherireland· Jan 19

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.

Usher Syndrome Ireland@usherireland· Jan 14

🎉 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

Usher Syndrome Ireland@usherireland· Jan 14

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.

Usher Syndrome Ireland@usherireland· Dec 18

🎄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

Usher Syndrome Ireland@usherireland· Dec 16

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.”

Usher Syndrome Ireland@usherireland· Dec 3

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

Usher Syndrome Ireland@usherireland· Nov 13

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. 💚

Usher Syndrome Ireland@usherireland· Oct 23

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

Usher Syndrome Ireland@usherireland· Oct 20

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.

Usher Syndrome Ireland@usherireland· Oct 7

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.

Usher Syndrome Ireland@usherireland· Oct 5

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.

Usher Syndrome Ireland@usherireland· Sep 22

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.

Usher Syndrome Ireland@usherireland· Sep 19

(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.”

Usher Syndrome Ireland@usherireland· Sep 19

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.

Usher Syndrome Ireland@usherireland· Sep 15

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