Usher Syndrome Ireland
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usherireland.org
Usher Syndrome Ireland
@usherireland.org
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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
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usherireland.org
Usher Syndrome Ireland @usherireland.org · Dec 16
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...
Christmas Appeal Help Keep Our Community Connected
iDonate.ie Online cause Fundraising
www.idonate.ie
usherireland.org
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.
January 19, 2026 at 1:59 PM
usherireland.org
🎉 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
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.
January 14, 2026 at 11:54 AM
usherireland.org
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.
January 14, 2026 at 11:49 AM
Reposted by Usher Syndrome Ireland
usherireland.org
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
usherireland.org Usher Syndrome Ireland @usherireland.org · Dec 16
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...
Christmas Appeal Help Keep Our Community Connected
iDonate.ie Online cause Fundraising
www.idonate.ie
December 19, 2025 at 5:25 PM
usherireland.org
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
usherireland.org Usher Syndrome Ireland @usherireland.org · Dec 16
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...
Christmas Appeal Help Keep Our Community Connected
iDonate.ie Online cause Fundraising
www.idonate.ie
December 19, 2025 at 5:25 PM
usherireland.org
🎄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
December 18, 2025 at 12:17 PM
Reposted by Usher Syndrome Ireland
usherireland.org
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...
Christmas Appeal Help Keep Our Community Connected
iDonate.ie Online cause Fundraising
www.idonate.ie
December 16, 2025 at 10:49 AM
usherireland.org
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.”
December 16, 2025 at 11:34 AM
usherireland.org
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...
Christmas Appeal Help Keep Our Community Connected
iDonate.ie Online cause Fundraising
www.idonate.ie
December 16, 2025 at 10:49 AM
usherireland.org
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
December 3, 2025 at 8:42 PM
usherireland.org
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. 💚
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'.
November 13, 2025 at 7:04 PM
usherireland.org
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 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.
October 23, 2025 at 1:07 PM
usherireland.org
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.
October 20, 2025 at 10:21 AM
Reposted by Usher Syndrome Ireland
deborahhh.bsky.social
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
October 7, 2025 at 1:44 PM
usherireland.org
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...
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.
October 7, 2025 at 11:16 AM
usherireland.org
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: 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.
October 5, 2025 at 7:39 PM
usherireland.org
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
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.
September 22, 2025 at 12:30 PM
usherireland.org
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.
September 19, 2025 at 1:42 PM
usherireland.org
Are there other symptoms in Usher syndrome? Let’s explore what researchers are asking! Have you experienced any of these? Part 2 in comments below.

#UsherSyndrome #RareDisease
A man wearing glasses is looking up in a thinking manner. Text reads “Are there other symptoms in Usher syndrome? “. Icons of question marks, nose, and hand can be seen. An outline of researchers in a lab posing for a photo. Text reads “Some researchers think Usher syndrome may affect more than hearing, vision, and balance. However, with research still limited, links to other symptoms remain unproven.”. Text reads “Many with Usher syndrome report fatigue and sleep problems. While extra effort from hearing and vision loss plays a role, new research suggests USH may also affect how the brain regulates sleep. “. Underneath the text is a cut-out of a woman rubbing her eyes beneath her glasses. Text reads “Some research suggests that some people with Usher syndrome may experience reduced touch sensitivity. This theory has still yet to be confirmed.”. Underneath the text are outlines of several hands raised up.
September 15, 2025 at 8:33 PM
usherireland.org
Thrilled to share exciting news from Nacuity Pharmaceuticals. This approach is expected to work regardless of the USH type. For the first time, we may be looking at a treatment that can help slow vision loss while we continue to wait for a cure. #UsherSyndrome

🔗 www.nacuity.com/news/nacuity...
In quote box "NPI-001 shows more than 50% reduction in photoreceptor loss caused by RP associated with USH over two years". Text underneath reads "Nacuity Pharmaceuticals Announces Positive Data from Clinical Trial Evaluating NPI-001 to Treat Retinitis Pigmentosa Associated with Usher Syndrome"
September 12, 2025 at 7:41 AM
usherireland.org
What happens to balance in Usher syndrome? Let’s find out what keeps us steady!

Follow along & share to help spread awareness of this rare condition impacting only approx 250 people in Ireland.  💚

#UsherSyndrome #Balance #Vestilbular #RareDisease #USHDay2025 #SpeirGorm
 A cut-out of a young toddler walking. Text reads “What happens to balance in Usher syndrome? “.  A image of a toddler walking, appearing unsteady and holding on to an adult behind them, towards a sofa with an adult behind them. Text reads “The vestibular system helps us maintain balance. It includes the semicircular canals in the inner ear, which detect movement. Tiny hair cells and fluid in the canals send signals to the brain, helping us stay steady.”  Text reads “In USH1, the tiny hair cells in the vestibular system are often compromised at birth. This can cause delays in sitting, crawling, or walking in children. The vestibular system also works with the eyes to maintain balance. As vision loss progresses, balance difficulties may become more noticeable.”. Underneath is a cut-out of a woman with one hand outstretched and the other on her head as she appears unsteady. Text in circle reads “Not everyone with Usher syndrome has balance problems. Many people adapt naturally over time. Babies and young children with USH1 may benefit from physiotherapy or vestibular rehabilitation.”. Behind the circle are several icons representing balance.
September 11, 2025 at 2:13 PM
Reposted by Usher Syndrome Ireland
retinaint.bsky.social
Are you a young person living with a retinal condition? Register today for the Retina International Youth World Conference! Saturday, September 27 at 4pm CET> us06web.zoom.us/meeting/regi... #Conference #Science #Retina #RetinaYouth
September 9, 2025 at 8:08 AM
usherireland.org
What happens to vision in Usher syndrome? Let’s take a look in today’s post!

Follow along & share to help spread awareness. 🩷

(Post1/2)

#USDay2025
#UsherSyndrome #UsherSyndromeAwarenessDay #RareDisease #RP #RetinitisPigmentosa
Text “What happens to vision in Usher syndrome?”. A cut-out of a woman holding two fingers on one eye. Text “At the back of the eye is the retina. It’s lined with millions of light-sensitive cells known as rods and cones. Rods help us see in dim light. It also gives us peripheral vision. Cones help us see colour, detail, and depth in bright light.” An anatomy of an eye highlights the retina and icons of a rod and cone. Text “Retinitis pigmentosa (RP), a symptom of Usher syndrome, is an eye-condition where these rod and cone cells slowly die. Rods are usually affected first leading to poor night vision and tunnel vision. This is why night-blindness is often the first sign of RP.”. A cut-out of a woman appearing to have an ‘aha’ moment. Text “The fovea lies at the centre of the retina and is densely packed with cone cells. While rods degenerate first, cones often stay intact until later helping preserve central vision. This is why many people with Usher syndrome keep useful central vision for reading, colour, and detail well into the later stages.”. Several icons of cones are seen.
September 4, 2025 at 8:45 AM
usherireland.org
What happens to hearing in Usher syndrome?

Dyk: Usher syndrome is the leading genetic cause for deafblindness, yet people with this condition have normal vision at birth!

(1/2)

#RareDisease #Speirgorm #HearingLoss #Deaf #USHDay2025
A cut-out of a girl wearing a cochlear implant. Text in image reads, “What happens to hearing in Usher syndrome?”. Text on the top reads “Inside the inner ear is the cochlea.” and “It’s filled with thousands of tiny hair cells.” with an outline of a cochlea in between. Below is a speech bubble with text “These cells turn sound into signals the brain understands and hear.” and a cut-out of a man listening with a hand behind his ear. Text in image reads “In Usher syndrome, many of these tiny hair cells are damaged from birth or over time. This is called sensorineural hearing loss. The more damage, the greater the hearing loss.”. Below is a graphic of healthy and damaged hair cells. In text boxes the following text “Some people are born with little to no hearing (often in USH type 1). Some people are born with mild to severe hearing loss (often in USH type 2). Some people are born with no hearing loss (often in USH type 3 & 4). For some with USH type 2 and for all those with types 3 & 4, hearing loss is progressive.”.
September 2, 2025 at 1:54 PM
usherireland.org
Do you know what is Usher syndrome? Here’s a simple intro to get you started!

Over the next few weeks, we’ll take a deeper dive into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September.

Follow along & share to help spread awareness. 💛

#RareDisease #SpeirGorm #Awareness
 A cut-out of a boy looking through a magnifying glass with one eye. Text reads, “What is Usher Syndrome?” A background wallpaper of several eyes, ears, and person icons. Text in image reads, “Hearing loss - mild to profound, at birth or later”, “vision loss - normal at birth, progressive loss leads to night-blindness & tunnel vision” and “balance - some, but not all, experience issues with balance” . There is a plus symbol in between each text box. Above an image of the earth, text reads, “How Rare? Estimated around 12,000 babies are born with Usher syndrome each year. Possibly up to 700,000 people worldwide are living with USH.” Alongside several icons of DNA strands, text reads, “Currently, there are four types of Usher syndrome with many subtypes. Each type is usually distinguished by the severity of hearing loss at birth & onset of vision loss. Only genetic testing can confirm Usher syndrome.”
August 28, 2025 at 10:30 AM