Usher Syndrome Ireland

24/08/2026

Massive congratulations to David Walker, who completed the Antrim Coast Half Marathon yesterday!

We are so grateful to David for taking on the challenge to support Usher Syndrome Ireland and a HUGE thank you to everyone who supported him with such generous donations. 💚

Want to raise fund for us? Get in touch and we’ll help you find an event near you. And yes… there’s a FREE t-shirt in it for you!

Image description: 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.

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 and Northern Ireland providing a chance for anyone in our small community to meet others to simply chat, connect, and share experiences.

Would you like to come along to the next meet up? Sign up here: https://tinyurl.com/USH-Meetups

Those who are already signed up will receive their Zoom link next week.


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

Slide two: 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.”
Slide three: background image features a woman. Several boxes show ways to sign up including a QR code.

17/08/2026

A HUGE good luck to David Walker, who is taking on the Antrim Coast Half Marathon this Sunday in support of Usher Syndrome Ireland!

David is a fantastic supporter of our work and has a strong connection to Usher syndrome through his role as a teacher of Multi-Sensory Impairment, where he works alongside children with Usher syndrome to support their education. We’re truly delighted and grateful to have David taking on this mighty challenge and helping to raise both essential funds and awareness for Usher Syndrome Ireland.

Please show your support by donating to David’s fundraiser and sharing it with your friends and family. Best of luck, David, we’ll be cheering you on! 👏

Hi! I need your help. I'm taking part in Antrim Coast Half Marathon 2026 to raise money for Usher Syndrome Ireland, who do great work supporting individuals with the condition and their families. Usher Syndrome is a rare gentic condition that causes a loss of both hearing and vision. Through my job....

13/08/2026

As a trustee of Usher Syndrome Ireland for the past three and a half years, we’d like to say a HUGE thank you to David Ashley as he steps down from his role as trustee.

With his expertise and experience, David has provided valuable input to our board, research projects and wider work within the community. We’re incredibly grateful for the kindness, time and dedication he has shown to Usher Syndrome Ireland and the community over the years.

We’re delighted, however, that this isn’t a complete goodbye! David will continue to be involved with Usher Syndrome Ireland by joining us at events and supporting us as a volunteer.

Would you like to join us as a trustee? We’re looking for people who want to help shape our direction and ensure the voice and needs of the community remain at the heart of what we do.

If you’re interested, drop us a DM with your email address or contact us at [email protected], and we’ll send you all the information.



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

06/08/2026

Do you have a nickname for your cane or any mobility tools?



Image description: White text on a pink background reading: “Do you have a nickname for your cane or any mobility tools? “Beneath the question are icons of an eye and ear, and underneath are the words “Real Usher Voices” and the Usher Syndrome Ireland logo.

30/07/2026

What is the most silliest comment you’ve had about your sight or hearing loss?

We've heard so many that have made us stop in our tracks, have you?



Image description: White text on a pink background reading: “What is the most silliest comment you’ve had about your sight or hearing loss? “Beneath the question are icons of an eye and ear, and underneath are the words “Real Usher Voices” and the Usher Syndrome Ireland logo.

27/07/2026

Are you good with numbers? We need your help!

We’re looking for a voluntary Treasurer (Trustee) to join us our team. You don’t need previous board experience (training is provided) but we would love it if you have some experience in finance, accounting, or similar areas.

By joining our team, you will be helping a tiny organisation with a big mission supporting children, adults, and families living with Usher syndrome all across Ireland.

For more information on the role, please contact Carol at [email protected]

To apply: send a cover letter along with your CV to [email protected]

Closing date: 5pm, 31st August 2026.



Image description:
A woman holding a calculator in all three images. Text in image one reads: “are you good with numbers? We need your help!”. Text in image two reads: “The deets, we’re looking for a voluntary Treasurer (Trustee) to join us our team. No previous board experience is required but experience in finance, accounting, or similar areas would be valuable. We’re a tiny organisation with a big mission supporting children, adults, and families living with Usher syndrome across Ireland.”. Text in image three reads “Want to know more or apply? For more information: contact Carol at [email protected]. To apply: Please send us a cover letter (outlining why you might be a good fit for the role) with your CV to [email protected]).

24/07/2026

Do you use ISL? We are offering free counselling sessions to those diagnosed with Usher syndrome and communicate in ISL. Sessions are provided via Zoom with a qualified therapist fluent in ISL.

Interested? Register here: https://forms.gle/Ka68R2uH1624HEbM9 or scan the QR code in the third image.

Have a question or need help? Please email [email protected]

Usher Syndrome Ireland is delighted to offer this new service for the Usher syndrome community with thanks to funding awarded by the HSE National Lottery Funding. We gratefully acknowledge the HSE’s support in helping to make this accessible service possible.



Image description:
Image one: A woman is signing to someone on a laptop which is turned away from the camera. Text in image reads “Do you use ISL?”. An arrow underneath points right.

Image two: A zoomed in picture of image one shows a close-up of the laptop on a table and a potted plant nearby. Text in image reads, “We’re offering free counselling to those diagnosed with Usher syndrome and communicate in ISL. Sessions are provided remotely via Zoom with qualified counsellor fluent in ISL.”.
Image three: Same image as image two. Text in image reads “Interested? Register your place here: https://forms.gle/Ka68R2uH1624HE” There is a QR code underneath.

23/07/2026

Have you ever avoided telling someone you have Usher syndrome?

There can be many reasons for choosing whether or not to tell someone, and those reasons can be perfectly valid. 💚

Real Usher Voices is a weekly Thursday conversation series creating space for real conversations and shared experiences from people living with Usher syndrome, parents, families, and the wider community.



Image description: White text on a dark background reading: “Have you ever avoided telling someone you have Usher syndrome? “Beneath the question are icons of an eye and ear, and underneath are the words “Real Usher Voices” and the Usher Syndrome Ireland logo.

22/07/2026

Help us to build a powerful community for parents and carers of children and young people living with Usher syndrome across the island of Ireland.

Join today: https://tinyurl.com/USHParentsNetwork

Please repost and share with families who may find this helpful. 💚



[ Usher parents, Usher families, Usher family, Rare Disease, Usher Community, Rare Disease Ireland, Usher Ireland]