About
Cavernoma Ireland is a voluntary support group.
​Our Mission is to help people living in Ireland who are affected by cavernoma, including friends, family, carers and professionals.​
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We aim to do this through support, providing information, putting members in contact with other relevant parties and hosting events.
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Our Goal is to raise awareness of cavernoma, and its consequences for those affected.
In 2013 Cavernoma Alliance UK (CAUK) - Ian Stuart, along with Robert Doris, organised a talk in Beaumont Hospital Dublin in a lecture hall. The talk was given by Mr Mohsen Javadpour.
Robert Doris and his wife Triona had set up the Facebook page, before the 2013 talk. They called it Cavernoma Alliance Ireland.
A second talk took place in 2014, Mr Javadpour, in Beaumont again. Robert posted about this talk on the Facebook page and it was shared by Sandra Phair.
Gradually Sandra took over management of the Facebook page; replying to visitors, checking notification and likes, and ultimately adding new posts and content.
In 2018 Kay McGrath was looking to have a get together in Ireland, November of that year saw a 'Caver Chat' in person event take place, it was promoted via Facebook and organised with the help of Sandra and hosted on behalf of CAUK.
In 2019 Sandra attended the first European Cavernoma Alliance (ECA) meeting to represent Ireland and formed stronger links with CAUK.
March 2019 saw increased efforts on the Facebook page and it was renamed as Cavernoma Ireland, a logo was also designed.
The intentions for the page were to post things related to Ireland, neuro and links to events that other charity organisations held.
Sandra also got more involved with ECA, and from there Cavernoma Ireland started to evolve.
Further Caver Centre meet ups were held and more people started to interact with Cavernoma Ireland.
There was even fundraising events! Aisling Smith donated a necklace she made and Kay bought a fit-bit watch, to have as prizes. Kay's son also did a run. Altogether over €3000 was raised and the money went to CAUK as Cavernoma Ireland had not got financial accounts at that stage. The money was used for the support that CAUK gave their members in Ireland, with some also to go towards research for a cure.
In 2020 Cavernoma Ireland started having monthly online coffee catch-ups for its members.
Cavernoma Ireland also organised other speakers from Acquired Brain Injury Ireland, broadcast on CAUK's zoom.
Cavernoma Ireland is listed on Orphanet as CAUK's Irish contact and is connected with Rare Diseases Ireland. Other connections include Migraine Ireland, Beaumont Hospital, Epilepsy Ireland, Neurological Alliance of Ireland, Rare Ireland and the HSE.
2023 saw Cavernoma Ireland register as a voluntary group with its own constitution and committee.
In 2024 a new website was launched and an in person event was held for Cavernoma patients, carers and family.
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June 2024 - Our first Information Leaflet, Flyer and Poster was published.
Cavernoma Ireland History
Contact
By email: cavernomaireland@gmail.commail.com