Usher Syndrome Ireland

18/06/2026

As a person living with Usher syndrome, do you identify as deafblind?

This question is not intended to divide the community, but to help us better understand how people with Usher syndrome choose to identify themselves.

People with Usher syndrome have different experiences, different levels of hearing and vision loss, and ways of describing themselves. Some identify as deafblind, while some others prefer to identify as having both vision and hearing loss, or having dual sensory loss.

We’d love to hear your thoughts in the comments.

 
  
Image description: White text on a dark background reading: “As a person living with Usher syndrome, do you identify as deafblind?” Beneath the question are icons of an eye and ear, and underneath are the words “Real Usher Voices” and the Usher Syndrome Ireland logo.

17/06/2026

Coaching v Counselling, what's the difference? And how could coaching help someone with Usher syndrome?

In this short clip, our coach, Miriam, explains the difference and shares how coaching can help people navigate life with Usher syndrome.

📌 Empower USH Coaching Programme:
• Open to people aged 18+
• Must be resident in Ireland or Northern Ireland
• Sessions are free and delivered online
• Limited places remain - available on a first come, first served basis

Apply here: https://forms.gle/Juu4mabKfatH42537

Video description: Video recording of an online meeting between Miriam and Carol. Miriam appears on the left, with dark hair, wearing a dark top with a bright floral pattern. Carol appears on the right, with short blonde hair, wearing a blue T-shirt.

11/06/2026

If future treatments could preserve either your remaining sight or hearing, which would you choose, and why?

There are no right or wrong answers, just honest real-life experiences and perspectives.

Real Usher Voices is our new weekly Thursday conversation series from Usher Syndrome Ireland, creating space for honest conversations and shared experiences from people living with Usher syndrome, parents, families, and the wider community.



[ Sight loss, hearing loss, rare disease, RP, Retinitis Pigmentosa ]

Image description: White text on a dark background reading: “If future treatments could preserve either your remaining sight or hearing, which would you choose, and why?”. Beneath the question are icons of an eye and ear, and underneath are the words “Real Usher Voices” and the Usher Syndrome Ireland logo.

10/06/2026

A new literature review from Deafblind Scotland has brought together more than 40 studies exploring the psychosocial impact of Usher syndrome across the lifespan.

The findings are clear:

• Emotional wellbeing matters just as much as hearing and vision outcomes
• Social connection and peer support are strongly linked to quality of life
• Families need coordinated support from diagnosis, not years later when vision loss becomes more apparent
• Many people with Usher syndrome face ongoing uncertainty about identity, independence, education, employment and the future
• Fragmented services continue to leave families navigating complex systems on their own

Importantly, the review highlights the growing evidence that psychosocial support, peer connection, multidisciplinary care and early intervention are not "nice extras" - they are essential components of living well with Usher syndrome.

We are proud to see several Australian studies included in this international review, including research exploring parent support needs, paediatric Usher syndrome, and the need for multidisciplinary care.

For the UsherKids community, this reinforces what families have been telling us for years: support for today is just as important as hope for tomorrow.

📖 Read the full review here: http://usherkidsaustralia.com/wp-content/uploads/2026/06/Usher-Syndrome-DbS-Lit-Review-v.-June-26.pdf

09/06/2026

Last week we asked, “As a person/parent living with Usher syndrome, what has your experience with healthcare been like?”. You answered…

The responses shared here reflect just some of the experiences from our community.

Your responses highlighted recurring themes of poor accessibility, a lack of disability awareness, inconsistent support, and the need for clearer pathways of care. Many respondents described feeling left to navigate a life-changing diagnosis alone, reinforcing the urgent need for better support following diagnosis, including access to counselling, guidance, information, and ongoing emotional support that individuals and families need and deserve.

We know these experiences won’t reflect everyone’s journey. We’d really love to hear about yours.

Real Usher Voices is our new weekly Thursday conversation series from Usher Syndrome Ireland, creating space for honest conversations and shared experiences from people living with Usher syndrome, parents, families, and the wider community. Stay tuned for Thursday’s new question.


[ Healthcare, HCP, Rare Disease, Rare Disease, Doctor, Nurse, Audiology, Audiologist, Ophthalmology, Ophthalmologist, Retina, Retinitis Pigmentosa, RP ]

04/06/2026

As a person/parent living with Usher syndrome, what has your experience with healthcare been like?

Real Usher Voices is our new weekly Thursday conversation series from Usher Syndrome Ireland, creating space for honest conversations and shared experiences from people living with Usher syndrome, parents, families, and the wider community.

There are no right or wrong answers, just honest real-life experiences and perspectives.



Image description: White text on a dark background reading: “As a person/parent living with Usher syndrome, what has your experience with healthcare been like?” Beneath the question are icons of an eye and ear, and underneath are the words “Real Usher Voices” and the Usher Syndrome Ireland logo.

03/06/2026

ANTRIM COAST HALF MARATHON IS SOLD OUT

Missed out on an entry? The race may be sold out, but Usher Syndrome Ireland still has 24 charity places available for this incredible event.

This is your chance to take part in one of the world's most spectacular half marathons while supporting people living with Usher syndrome across the island of Ireland.

But hurry - Usher Syndrome Ireland has only 24 charity places remaining. Don't leave it too late.

Find out more and secure your place today: https://usherireland.org/antrim-coast-halfmarathon

Antrim Coast Half Marathon GivenGain Foundation

Image description: Runners cross the finish line at a previous Antrim Coast Half Marathon as spectators cheer them on. Overlaid text reads: “Antrim Coast Half Marathon Sold Out. Only 24 charity places remain for Team USH Ireland.”

Join the Antrim Coast Half Marathon and support Usher Syndrome Ireland. Run for a cause, make a difference, and enjoy a stunning coastal route!

02/06/2026

Last week we asked, “As a parent of a child living with Usher syndrome, what has been the hardest part?”. You answered…

The responses shared here reflect just some of the experiences and feelings expressed by parents in our community.

Thank you to each and every one of you who took the time to reply. Your responses not only help us to better understand the experiences of parents, but also help other families feel less alone.

They have also highlighted the need for better support following diagnosis, including access to counselling, guidance, and ongoing emotional support that families need and deserve.

Real Usher Voices is our new weekly Thursday conversation series from Usher Syndrome Ireland, creating space for honest conversations and shared experiences from people living with Usher syndrome, parents, families, and the wider community. Stay tuned for Thursday’s new question.



ID: At the bottom of each image are icons of an eye and ear, along with the words “Real Usher Voices” and the Usher Syndrome Ireland logo. Text is light on a dark background, Text and Quotes in comments section.

31/05/2026

Today is Carol’s big day as she takes on the Vhi Women’s Mini Marathon alongside our fantastic champions, Deirdre, Anne, Angela and Caitriona!

We’re incredibly grateful for Carol’s dedication as Chairperson of Usher Syndrome Ireland and for the time and effort she has put into raising vital funds for our charity. As a volunteer-run organisation, support like Carol’s helps us continue to provide information, connection and support to the Usher community every day. 💚

If you’d like to support Carol and help make a difference, you can donate to her fundraiser here: https://www.idonate.ie/fundraiser/carolbrill22

Best of luck Carol and to all of taking on the challenge 💚



iD: An image of Carol at last year’s Vhi WMM. Caption says ‘Carol’s fundraiser’. A qr code is placed at bottom with link to her fundraising page.

28/05/2026

As a parent of a child living with Usher syndrome, what has been the hardest part?

Real Usher Voices is our new weekly Thursday conversation series from Usher Syndrome Ireland, creating space for honest conversations and shared experiences from people living with Usher syndrome, parents, families, and the wider community.

There are no right or wrong answers, just honest real-life experiences and perspectives.



Image description: White text on a dark background reading: “As a parent of a child living with Usher syndrome, what has been the hardest part?” Image description: White text on a dark background reading: “As a person living with Usher syndrome, what feels most misunderstood by people around you?” Beneath the question are icons of an eye and ear, and underneath are the words “Real Usher Voices” and the Usher Syndrome Ireland logo.