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

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

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.

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/...

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

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

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...

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...

🎉 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

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

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

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

🎄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

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...

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...

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...

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

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. 💚

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

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

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

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...

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

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

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

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

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...

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

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

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

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

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

Exciting opportunity for teens with Usher syndrome - free Robotics Coding Workshop will take place at TCD where teens can learn coding, connect & have fun with peers in a friendly, supportive environment. For more info, email Dr Katie O’Connor: [email protected] #UsherSyndrome #Coding #UsherKids

Our recap of #USH2025 - International Symposium on Usher Syndrome is now live, highlighting the exciting research & innovative work currently underway to find treatments for this rare disease: usherireland.org/ush2025 #UsherSyndrome #Genetics #IRD #Research #IRDs #HearingLoss #RP

New research delivering a corrected version of the faulty gene that causes Usher syndrome — PCDH15 — was able to restore hearing in mouse models and also showed potential in retinal organoids and nonhuman primates for improving vision. hms.harvard.edu/news/second-...

Ready to gain a fresh perspective & the benefits our previous client experienced? More info & sign-up form: forms.gle/Juu4mabKfatH... This initiative is supported by @amgen.bsky.social ’s 2024 #RareIs grant. It’s open to anyone over 16 living in Ireland who has a connection to Usher syndrome.

📢 Calling all healthcare professionals in Ireland! Learn more about Usher syndrome by availing of a free resource pack sent to your clinic by emailing the address to [email protected] You can explore everything inside & watch our animation video here: usherireland.org/are-you-ushe...

🌟 From the bottom of our hearts – thank you Grace 🌟 Grace recently took on the Belfast Marathon in support of Usher Syndrome Ireland, raising an incredible €1,244.91. We are ever so grateful to Grace, and to supporters like her who help raise much-needed funds to help keep our work going. 💚

Today is the 1st ever UN-recognised International Day of Deafblindness. According to stats shared at USH2025 in the NL, it’s believed over 700,000 pple globally are living with Usher syndrome - the leading genetic cause of deafblindness - with around 12,000 babies born each year with USH globally.

What does deafblindness mean to you? It may not be what you think! #UsherSyndrome #RareDisease #Medics #DBAW2025 #SpeirGorm #LearnAboutUSH #CureUSH

Thank you to our #USHIreland team & everyone who supported them at the recent Vhi WMM! Together, they raised a fantastic €1,831. We’re so grateful for your support. 💚 Interested in fundraising much-needed funds for us? Please get in touch at [email protected] #UsherSyndrome #SpeirGorm

We’re asking EVERYONE to support the #ImNotInvisible10YearsOn campaign by sharing photos. It’s been 10 years since the #ImNotInvisible campaign & recognition for deafblindness still hasn’t been implemented meaning a lack of adequate services. #SpeirGorm #UsherSyndrome #DualSensoryLoss #DeafBlind

It started with 500+ photos. Now it’s time to do it again. Watch the original #ImNotInvisible campaign from 2015 & join us for #ImNotInvisible10YearsOn. Post your photo. Tag @usherireland.org . Let’s make the deafblind community feel seen, heard & supported. #UsherSyndrome #SpeirGorm #DeafBlind

Today marks 10 yrs since Carol Brill & others urged the State to recognise deafblindness as a unique disability. The call was clear & supported - yet still has not been implemented. We’re reigniting it with #ImNotInvisible10YearsOn. Post your photo & tag @usherireland.org #Speirgorm #UsherSyndrome

This is a fantastic charity, created by people with usher syndrome. It does amazing work to address policies and research as well as raising the profile of this rare disease that causes deafblindness

Can we ask you for your help please? Can you nominate Usher Syndrome Ireland for the AIB Community €1 Million Fund here: aib.ie/personal-for... We'd be so grateful as your nomination could help us access much-needed funding to support our work. More info in the image 💚 #SpeirGorm #SpeirGhorm

Meet Miriam - Miriam is a qualified life coach dedicated to supporting YOU - whether you're living with Usher syndrome or you're a parent or carer of someone who is. More info & registration form here: forms.gle/Juu4mabKfatH... #UsherSyndrome #Support #Coaching

Welcome Usher Syndrome Ireland! We’re proud to spotlight @usherireland.org. This organisation supports people with a rare genetic condition that causes combined hearing and vision loss. We're thrilled to have them in the DFI network. Read more: bit.ly/4iVfdxF

Meet Carol who's delighted to support Usher Syndrome Ireland as our new Company Secretary! A BIG welcome to the team Carol — we’re so thrilled to have you on board! 💚 #UsherSyndrome #Volunteer #Welcome #USHCommunity #LivedExperiences #InclusiveTech #AssistiveTechnology #TogetherWeCan

Stay informed & connected on all things related to Usher syndrome by joining our mailing list! Our April edition is dropping soon, and it’s a packed one full of exciting updates! Sign up here: tinyurl.com/SignUpToUSI #UsherSyndrome #Newsletter #RareDisease #RetinitisPigmentosa #Research #Support