About
Cavernoma Ireland is a registered charity dedicated to making a difference for people in Ireland affected by brain and spinal cord cavernoma, along with their families, carers and supporters.
Our Mission is to support people in Ireland affected by brain and spinal cord cavernoma, their families, carers and supporters, by improving health and wellbeing through information, peer support, advocacy, awareness-raising, and online and in-person events.
Our Goal is to raise awareness of brain and spinal cord cavernoma and its consequences for those affected.
Our Vision is a future where everyone in Ireland affected by brain and spinal cord cavernoma has access to reliable information, peer support, advocacy and appropriate healthcare services, and where cavernoma is better understood, awareness is increased, early diagnosis is supported, and improved treatments and services are available to enhance health and wellbeing.
Registered Charity Number: 20207090
Our History
2013
First Public Talk
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Ian Stuart, founder of Cavernoma Alliance UK, and Robert Doris organised the first public talk at Beaumont Hospital, Dublin, with Mr Mohsen Javadpour.
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The Facebook page was created by Robert and his wife, Triona, and was called “Cavernoma Alliance Ireland”.
Growing Connections
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A second talk was held at Beaumont Hospital with Mr Mohsen Javadpour.
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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
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Sandra represented Ireland at the 1st European Cavernoma Alliance (ECA) meeting.
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The Facebook page was renamed "Cavernoma Ireland" and a new logo was introduced.
2019
2019
to 2020
Community Engagement
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Further meet-ups and online interactions encouraged community participation.
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Early fundraising raised over €3,000 for Cavernoma Alliance UK (CAUK), supporting Irish members and contributing towards research.
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Monthly online coffee catch-ups began in 2020.
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Guest speaker sessions were also hosted through CAUK’s Zoom, providing opportunities for the Irish community to learn from professionals and organisations working in related fields. These included talks from Séamus, former CEO of Brí, the former Irish brain injury charity, and Orla McBennett, an Services Manager with Acquired Brain Injury Ireland.
Formal Registration
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Cavernoma Ireland registered with Cavan PPN as a non-profit, voluntary support group, with our constitution, management committee and financial accounts.
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Governance and transparency structures were established.
2023
June 2024
Reconnecting in Person
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Our first in-person event since COVID-19 was held in Dublin, bringing together people affected by cavernoma, carers and families.
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We also launched a new logo, website and our first information leaflet, flyer and poster.
New Chapter
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Cavernoma Ireland officially registered as a charity in Ireland, marking an important milestone for our association and the cavernoma community we support.
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As an incorporated association, this provides a stronger foundation for our continued work supporting people affected by brain and spinal cord cavernoma, raising awareness and improving understanding.
August 2026
Governance
Contact
By email: cavernomaireland@gmail.com