@usherireland.org
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: https://www.idonate.ie/forms/UsherSyndromeIreland
29-year-old Karolina Pakenaite lives with progressive #HearingLoss and #SightLoss due to #UsherSyndrome - and she's hoping to be the first #deafblind person to climb Mount Everest. ⛰️ #BlindNewWorld
(Story via BBC ⬇️)
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.
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
Registration for Vhi Women’s Mini Marathon go live at 11am & tickets for this popular event typically sell out real quick! We’d be delighted if anyone would run/walk on behalf of Usher Syndrome Ireland, a small volunteer run charity 🙏
Tickets: www.vhiwomensminimarathon.ie
#Speirgorm #Speirghorm
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.
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
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 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
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.”
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.
Many struggle with writing alt text for charts and other other data visualizations. Amy Cesal's "Writing Alt Text for Data Visualization" hammers home the importance of explaining the chart type, the type of data, and the reason for the chart.
medium.com/nightingale/...
Absolutely!
Text in the image reads, “Save the Date: USH Connect 2026, Saturday 19 September.” Below this is a group photo from a previous USH Connect event, showing some of the attendees standing outside a building. Some people are using canes, and a guide dog is also visible. The Usher Syndrome Ireland logo appears at the bottom of the image.
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
A photograph of a woman sitting at a table working on a laptop. Text overlay reads, “January Newsletter dropping tomorrow.” Additional text highlights what’s included: “Community Updates, Research News, USH Meetups, and Events.” The Usher Syndrome Ireland logo appears at the bottom of the image.
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
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.
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.
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...
Image description: A circular portrait of Dr. Solomon Kamal-Uddin is centred on a blue and white background. He has short dark hair and is wearing a blue shirt. Text on the image reads, “Welcome to the Team, Dr. Solomon Kamal-Uddin, New Board Trustee.” The Usher Syndrome Ireland logo appears underneath.
🎉 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
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.
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
21% of target reached so far - thank you so much to those who have donated 💚 Can you help us get closer to our target? We’re a very small, voluntary run charity and every small donation really helps support our work & our community 🙏
#SpeirGorm #Ireland #Appeal
21% of target reached so far - thank you so much to those who have donated 💚 Can you help us get closer to our target? We’re a very small, voluntary run charity and every small donation really helps support our work & our community 🙏
#SpeirGorm #Ireland #Appeal
🎄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 causes progressive loss of sight and hearing. This Christmas, we’re raising funds for USH Connect 2026, the only accessible, inclusive event for this community. With just 18% of our target reached, we’re asking #SpeirGorm for much-needed help.
www.idonate.ie/forms/USHCon...
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.”
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...
Usher syndrome causes progressive loss of sight and hearing. This Christmas, we’re raising funds for USH Connect 2026, the only accessible, inclusive event for this community. With just 18% of our target reached, we’re asking #SpeirGorm for much-needed help.
www.idonate.ie/forms/USHCon...
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
Image features a profile picture of each trustee with their name; Eugene Lynch, David Ashley, Deirdre Leech, Carol Brill, Deborah Heffernan, and Anne Shields. Text in the image reads 'A big thank you to our trustees on Charities Trustees' Week'.
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. 💚
A cute Jack Russell rests its paw on a laptop keyboard. The on-screen caption reads “Hey you,” and a QR code beside it links to a sign-up form.
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
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.
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
There needs to be a universal disability payment. The current means-tested support can then become a 2nd layer. This would create a fairer system as there’s many people with disabilities who can't work but still get nothing under the current rules yet endure higher living costs!
#SpeirGorm #Budget26
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.
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...
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.
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: 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.
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
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.”
(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
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.
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
