About
Cavernoma Ireland is a non-profit, voluntary association.
Our Mission is to help people living in Ireland who are affected by cavernoma, including friends, family, carers and professionals.
We aim to do this through support, providing information, putting members in contact with other relevant parties and hosting events.
Our Goal is to raise awareness of cavernoma, and its consequences for those affected.
Our History
2013
First Public Talk
-
Ian Stuart founder of Cavernoma Alliance UK and Robert Doris organised the first public talk at Beaumont Hospital, Dublin with Mr Mohsen Javadpour.
-
The Facebook page was created by Robert and his wife Triona. It was called “Cavernoma Alliance Ireland”
Growing Connections
-
A second talk was held at Beaumont Hospital with Mr Mohsen Javadpour.
-
Sandra Phair began managing the Facebook page, responding to visitors, posting updates, and adding content.
2014
2018
In-Person Community
Kay McGrath organised the first in-person “Caver Chat” in Ireland, promoted via Facebook and supported by Sandra, strengthening the community. The event was hosted on the behalf of Cavernoma Alliance UK.
Building Alliances
-
Sandra represented Ireland at the 1st European Cavernoma Alliance (ECA) meeting.
-
The Facebook page was renamed to 'Cavernoma Ireland' and a new logo was introduced.
2019
2019
to 2020
Community Engagement
-
More meet-ups and online interactions encouraged community participation.
-
Early fundraising raised over €3,000 for CAUK to support Irish members and to go towards research.
-
Monthly online coffee catch-ups began in 2020.
-
Guest speaker sessions were hosted on CAUK’s Zoom and are available on their YouTube channel. An example of of Séamus's talks, he was the CEO from the former Ireland brain injury charity - Brí - his 2nd talk for us is https://www.youtube.com/watch?v=IERrFg7LPIE&list=PLeGF9ekA8DkR3tqAXemaQx2F1eYSLOlAS&index=20 and Orla Mc Bennett from Acquired Brain injury Ireland - https://www.youtube.com/watch?v=n1jaf1XEdj8&list=PLeGF9ekA8DkR3tqAXemaQx2F1eYSLOlAS&index=16
Formal Registration
-
Cavernoma Ireland registered as a non-profit, voluntary association with our constitution, management committee and financial accounts.
-
Governance and transparency structures were established.
2023
June 2024
New Chapter
-
Our first in-person event since covid, in Dublin celebrated patients, carers and families.
-
Launch of the new logo, website and our first information leaflet, flyer and poster.
Governance
Contact
By email: cavernomaireland@gmail.com