News
Lenister House
Cavernoma Ireland was at the Oireachtas 'All Party Group meeting on Rare Diseases' in Leinster House, Wednesday 26th February.
Sandra Phair, Chair of Cavernoma Ireland, attended the meeting.
The meeting was marking Rare Disease Day by reconvening the Oireachtas All Party Group on Rare Diseases for the first time with the new Dáil. Organised by Rare Diseases Ireland(RDI).
The Meeting;
- Highlighted the challenges of living with a rare disease in Ireland.
- Gave details of RDI's hope for the future with the imminent publication of a new National Rare Disease Strategy; and
- Outlined the opportunities that exist for Ireland as RDI seeks to embed innovation into the heart of care for people living with rare diseases.
The Oireachtas is the bicameral parliament of Ireland. Leinster House is the seat of the Oireachtas,
Cavernoma Ireland
Member's Of
We are now members of Rare Diseases Ireland and
IPPOSI (Irish Platform for Patients Organisations, Science & Industry).
Rare Diseases Ireland is “a patient advocacy national alliance for voluntary groups representing people affected by or at risk of developing a rare disease.”
IPPOSI is “the collective voice of patients, science and industry in Ireland’. Their vision is to be “The patient voice is at the centre of all health policy, care, research and innovation in Ireland.”
Looking forward to the future.
#StrongerTogether
Christmas Raffle
🎉Congrats to Our Christmas Raffle Winners!
Thank you very much to everyone who entered.
You have made our raffle such a great success!
✨Total Raised €416
Thank you to those who kindly donated the prizes, your generosity is very much appreciated.
These vital funds will allow us to continue our work supporting those affected by cavernomas.
🎁The winners are:
1st - Carmel Lynch - €100 One4All Gift Card
2nd - Martin Lynch - Acrylic Painting Framed. 'Lemons & coffee pots'.
3rd - Kay McGrath - Handcrafted Gold Vermeil Necklace with a Chrysoprase stone.
4th - Hannah Cuffe - €50 Dunnes Stores Gift Card
Congratulations.
Thank you for entering!
🤗Thank you to those who kindly donated the prizes, your generosity is very much appreciated.
‣ The gift cards were donated by members.
‣ Hannah Cuffe donated a painting. Check out her Instagram page https://www.instagram.com/h.cuffe_creations/
‣ Aisling Smith donated a handcrafted necklace. Check out her Facebook page https://www.facebook.com/aislingsmithjewellery
Advocacy
Séamus Carroll talks about 'Advocacy' on Headway Ireland 's Podcast.
Listen here:
• On YouTube - https://www.youtube.com/watch?v=3dl8e86VH8k
• On Spotify - https://open.spotify.com/episode/2pb2sk98Z4S8kRzTUJvQ02
Séamus is the Secretary of Cavernoma Ireland.
Leaflets, Flyers, Posters, Pens
& Stickers
Our first Leaflets, Flyers, Posters, Pens & Stickers, where launched in June 2024.
We are recipients of the SICAP (Social Inclusion and Community Activation Programme) Grant.
"The grant is co-funded by the Government of Ireland and the European Union".
Thank you to Cavan County Local Development for their support.
June In Person Event
'Cavernoma Ireland Launch'
Our June In-Person Event was a great success. Enjoyed by all who attended.
Guest Speakers:
Epilepsy Ireland - Geraldine Dunne.
Headway Ireland - Shane Fitzgerald and Rachel Coyle
In St. Mary's Parish Hall, Haddington Road, Dublin 4.
June 2024
Thank you very much to
Hannah Cuffe for designing
our new logo.
Headway Podcast
The Headway Podcast, launched on 23 May by CEO, Fiona Murphy, is the brainchild of staff member, Shane Fitzgerald. Shane along with Rachel Coyle have put together a series of discussions & interviews with survivors of brain injury who are part of Headway.
You can read a full background to the podcast here:
https://headway.ie/news/the-headway-podcast/
The podcast is available at this link: https://podcasters.spotify.com/pod/show/headwayireland
Or if you want to access via YouTube go here: https://www.youtube.com/@HeadwayPodcast
Shane and Rachel were speakers at our event in June.
'Cavernoma on my Mind' - Book
This beautiful hand-drawn book of plants has two purposes. To give you a lovely relaxing, mindful experience and to raise awareness for Cavernoma via the construction of the Cavernoma on My Mind Garden at The Chelsea Flower Show 2023. Each plant can be found in the garden and adds to the Cavernoma story by depicting a feeling linked to the condition or by its relevant medicinal properties. The forward is written by Keith Weed CBE, President of the Royal Horticultural Society. The book is written by Taina Suonio and Anne Hamilton, designers of the garden, and the illustrations are by the artist Lucy MacQueen.
This book is now available at a discounted price of €10.00, including P&P, for Cavernoma Ireland members.
Every sale includes a 20% donation to Cavernoma Ireland.
If you would like to support us and buy a copy of this unique book,
please contact Anne Hamilton, email ah@annehamiltonassociates.com
