iiinova — where your digital self keeps evolving

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

If you'd like to nominate us (we'd be so grateful!) in your local Tesco store, please nominate us here: forms1.thrive-platform.com/tesco/commun... #Speirgorm

forms1.thrive-platform.com

Community Fund Application

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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 · 16/05/2026

Just over three weeks to go! 🎉🎉 Pls support our Team USH Ireland taking on the Vhi Women's Mini Marathon via the link today. Your donation will help support our tiny volunteer run charity 💚 www.idonate.ie/team/vhiwome... #Speirgorm #Speirghorm #VhiWMM #Repost

idonate.ie

Support Usher Syndrome Ireland- Vhi Women's M on iDonate.ie

Usher Syndrome Ireland- Vhi Women's Mini Marathon for Usher Syndrome Ireland | iDonate.ie

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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 · 30/04/2026

Wonderful news. The NI Assembly has passed the Sign Language Bill. This Bill also gives official recognition of both Irish Sign Language (ISL) & British Sign Language (BSL) in Northern Ireland. Congratulations to everyone on this historic achievement! www.belfasttelegraph.co.uk/news/norther...

belfasttelegraph.co.uk

Special moment hailed with passing of Northern Ireland Sign Language Bill

The Northern Ireland Assembly has passed the region’s long-awaited Sign Language Bill.

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Reposted by Usher Syndrome Ireland

Accessibility Awareness @a11yawareness.bsky.social · 22/04/2026

When creating PDFs, avoid using "Print to PDF." A screen reader user may still be able to access the text of PDFs created this way, but heading structure, alternative text, and any other tag structure will be lost. Using "Save As" or "Export" can preserve these tags.

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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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Reposted by Usher Syndrome Ireland

Zebrafish Rock! @zebrafishrock.bsky.social · 12/03/2026

“These findings suggest a novel role of usherin in the pineal gland & establish a mechanistic link between usherin dysfunction & sleep disturbances, providing a biological basis for the fatigue & sleep problems reported in USH2a patients.” New work from van Dijk Lab at @radboudumc.bsky.social 🐟

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Reposted by Usher Syndrome Ireland

bioRxivpreprint @biorxivpreprint.bsky.social · 11/03/2026

Usherin in the pineal gland: altered sleep in zebrafish models of Usher syndrome type 2a www.biorxiv.org/content/10.64898/20…

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Reposted by Usher Syndrome Ireland

ClutchScience (Jen Phillips) @clutchscience.bsky.social · 20/02/2026

On #FluorescenceFriday, a deceptively simple looking image that took literal YEARS to obtain. These 10dpf zebrafish photoreceptors are showing that a particular modification to the protein Usherin does not affect protein localization & thus can be pursued as a therapy for Usher syndrome type 2A 🧪

A high magnification image showing tiers and rows of photoreceptors that are labeled with acetylated tubulin (magenta) arranged in vertical orientation within each cell and a wee green dot--actually a tiny donut-- of labeled Usherin protein encircling the base of each cilia. Mutations in the USH2A gene affect the localization and function of this protein and represent the most common cause of both usher syndrome and the most common cause of the type of progressive blindness known as retinitis pigmentosa. Seeing this, the normal localization of Usherin, combined with additional behavioral and histological tests, demonstrate that the removal of a small region of this very large protein doesn't adversely affect localization or function of the modified protein. This provides proof of principal that if someone has Usher syndrome or RP due to mutations found within this small region, creating a similar modification in their photoreceptor cells could provide improved protein function, better vision, and delay or minimize the degeneration.

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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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Reposted by Usher Syndrome Ireland

BlindNewWorld @blindnewworld.bsky.social · 05/02/2026

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 ⬇️)

bbc.com

Deafblind Bath woman counting down to Mount Everest challenge

Karolina Pakenaite, 29, has Usher syndrome which causes progressive hearing and sight loss.

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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 · 04/03/2026

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

vhiwomensminimarathon.ie

Vhi Womens Mini Marathon

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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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Reposted by Usher Syndrome Ireland

Accessibility Awareness @a11yawareness.bsky.social · 30/01/2026

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/...

medium.com

Writing Alt Text for Data Visualization

How do you write text that conveys the whole meaning of a visualization? You probably can’t. But that doesn’t mean that you shouldn’t try

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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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Reposted by Usher Syndrome Ireland

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 · 19/01/2026

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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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Reposted by Usher Syndrome Ireland

Usher Syndrome Ireland @usherireland.org · 19/12/2025

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

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Usher Syndrome Ireland @usherireland.org · 19/12/2025

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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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Reposted by Usher Syndrome Ireland

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

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...

idonate.ie

Christmas Appeal Help Keep Our Community Connected

iDonate.ie Online cause Fundraising

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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 · 16/12/2025

idonate.ie

Christmas Appeal Help Keep Our Community Connected

iDonate.ie Online cause Fundraising

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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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Reposted by Usher Syndrome Ireland

Deborah @deborahhh.bsky.social · 07/10/2025

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

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