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Usher Syndrome Ireland

@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

148 Posts228 Follower229 Folgt
Usher Syndrome Ireland@usherireland.org · 2w ago

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!

David Walker taking part in the Antrim Coast Half Marathon. He is wearing a teal Usher Syndrome Ireland T-shirt featuring the text “I’m running for Usher syndrome, ask me about it!” Underneath is the Usher Syndrome Ireland logo. Above the caption is an eye-and-ear icon inside a speech bubble.
Usher Syndrome Ireland@usherireland.org · 3w ago

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.”background image features a woman. Several boxes show ways to sign up including a QR code.
Usher Syndrome Ireland@usherireland.org · 4w ago

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.org · 4mo ago

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...

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.

belfasttelegraph.co.uk

Accessibility Awareness@a11yawareness.bsky.social · 5mo ago

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.

Zebrafish Rock!@zebrafishrock.bsky.social · 6mo ago

“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 🐟

bioRxivpreprint@biorxivpreprint.bsky.social · 6mo ago

Usherin in the pineal gland: altered sleep in zebrafish models of Usher syndrome type 2a https://www.biorxiv.org/content/10.64898/2026.03.09.710525v1

Usher Syndrome Ireland@usherireland.org · 5mo ago

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.org · 6mo ago

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.org · 6mo ago

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.”
Accessibility Awareness@a11yawareness.bsky.social · 7mo ago

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/...

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

medium.com