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
image shows a group of people standing outside Leinster House. From left to right: Theresa Eccles, Dr Paul McKenna, Carol Brill, Laura English (ASF), Dr Sandra Cummings, Laura Brady (Fighting Blindness), and Derek Lacey.
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
ID: Black and white, blurred image of women running on a road. Text in the picture reads, 'Run/Walk for Usher Syndrome Ireland at Vhi Women’s Mini Marathon. Sun - Jun 1st, 2025. '
Will you be part of the #TeamUSHIreland & help raise funds for Usher Syndrome Ireland?
🔗 Sign up: www.vhiwomensminimarathon.ie
💙 Set up your fundraiser & click ‘Join Team’: www.idonate.ie/team/ushirel...
#UsherSyndrome #VhiWMM #RunForCharity
#Running #RunIreland #RareDisease #VolunteerCharity
#SpeirGorm #SpeirGhorm community! On this gorgeous, stunning day, why not do a little bit of good by reposting this 😎
We’re a very small, volunteer-run charity & we really need all the help to find someone willing to dedicate 3-4 hours a month as our company secretary! No other duties involved 🙏
Anyone know the place to get customised t-shirts/vests in teal-coloured?
#SpeirGorm #Help #VhIWMM
Yesterday I kept thinking it was Thursday 🥴
ID: A low-angle shot of a group of people making a circle with their hands. The sky is cloudy with patches of blue and sunlight breaking through. Text in image: "Connecting Parents, Strengthening Support - The USH Connect Parents Support Group."
Curious about our USH Connect Parents Support Group? You can read the highlights of key discussions from the latest meeting here: usherireland.org/life-with-us...
#UsherSyndrome #Parents #SupportingParents #Education #Supports #Careers #SpeirGorm
A group photo of six people - Trudy, Deborah, Eugene, Carol, Deirdre, and Anne are standing side by side, smiling at the camera in an outdoor setting. The text 'Join Our Team' is displayed prominently on the image. At the bottom, the Usher Syndrome Ireland logo is visible.
Hey #SpeirGorm - would you like to dedicate a few hours p/m to a good cause? We’re looking for a Company Secretary (voluntary role) to join our team! Email contact@usherireland.org to learn more. Experience required.
Pls share & help us get the word out
#Volunteer #UsherSyndrome #VolunteerIreland
ID: A picture of sheep roaming a rocky terrain overlooking water and houses at sunset. The text in the image reads, 'Hang in there - we're almost there! Irish Summer Time begins in just 16 days!
We're almost there! Irish Summer Time kicks in just 16 days, and from then until September, the sun won’t set before 7:56pm. 🎉 A big relief for SO many of us - especially those with Usher syndrome who experience night blindness!
#Ireland #UsherSyndrome #RetinitisPigmentosa #HappyFriday #SpeirGorm
🎤 Ahem…testing…hello Bluesky…👋🏻