Family Fun Day 2024
At the Explorium National Sport & Science Centre
Sunday 10th November was a day filled with excitement and laughter at the Explorium National Sport & Science Centre.
Our Family Fun Day was the perfect opportunity for families in our community to come together and enjoy the interactive environment of the Explorium. The Explorium was a fantastic venue, being fully accessible, and had something for all ages. From interactive science exhibits to thrilling sports activities, there was so much to do.
Our family fun day was open to all families with a child (big or small) living with Dravet Syndrome or other complex epilepsy. It was great to have so many families come together and fantastic to meet some for the first time for those new to our community. It was lovely to see children and siblings making new friends.
Symposium for Parents and Caregivers 2024
On Saturday 25th May we came together with parents, caregivers, researchers and clinicians for our 2024 Symposium. We at the Lucan Spa Hotel. It was a day filled with insightful discussions, valuable talks from guest speakers and time to catch up with other parents from our supportive community. This event was kindly supported by UCB.
The day started with time for tea, coffee and a chat as everyone settled in. Our chairperson Nicola Kehoe kicked off the talks with a brief introduction to Dravet Syndrome Ireland and the supports we offer including an overview of our Family Grant Scheme. Our first guest speaker of the day was Dr Susan Byrne, Consultant Paediatric Neurologist, based at FutureNeuro, RCSI, and Crumlin. Susan gave a wonderful overview of Dravet Syndrome for newer families and discussed CINDI, the paediatric register for genetic conditions in Ireland.
Orla O’Connor, Principal teacher and Special Education Teacher, spoke next on inclusive and effective education, giving parents insight into the supports available within the education system.
Professor Norman Delanty then gave an overview of new and upcoming treatments in Dravet Syndrome. This included exciting genetic treatments on the horizon with clinical trials underway. This is great news for our community as we share the hope for better treatments for our family members. There was plenty of time for questions and discussion during the talks and over lunch together afterwards.
We very much look forward to seeing everyone again soon at our next event.
Family Event 2023
Our family event ‘Creating Connections’ was held in Lucan Spa Hotel on 10th June 2023 in collaboration with FutureNeuro (RCSI), supported by HRB and Biocodex. We had a fun-filled day with information on the latest research and treatments in Dravet Syndrome and other complex epilepsies. Researchers, families and clinicians came together to share their experiences and expertise. We were delighted to have talks from Prof Norman Delanty, Consultant Neurologist, Dr. Deirdre Kearney, Behavioral Psychologist, as well as Petra Bencurova and Radharani Benvenutti who are both currently undertaking post-doctoral Dravet-related research in RCSI. Visit our gallery section to see more photos from the day.
Virtual Talks for Parents and Caregivers
We run a series of virtual talks for parents and caregivers on a variety of topics related to caring for a child with complex epilepsy. These talks are free of charge and are open to all parents of children with complex epilepsies. These talks are also a great way to link with other parents. Our next talk will be announced soon. Follow up on Facebook and Instagram to keep updated on our next events.
Previous Virtual Talks
‘Grief and loss when caring for a child with complex epilepsy’
Guest speaker, Breffni McGuiness, explored this important and often overlooked side of our parenting journey.
Breffni Mc Guinness is the Bereavement Coordinator with LauraLynn, Ireland’s Childrens Hospice. He is a professional Dramatherapist with a background in pastoral care, and provides bereavement support to individuals and groups based on the creative arts. His special interests are in providing support around hidden losses and workplace bereavement and the use of creativity in working with people who are grieving.
‘Zooming In’ on Distressed Behaviour
‘Supports for children and families experiencing distressed behaviours: practical strategies and discussion’
Thank you to Deirdre Kearney, a highly accomplished behavioural psychologist, for her fantastic and very practical talk on managing distressed behaviours. Deirdre has expertise in the field of intellectual disabilities, autism and complex behaviours.
‘Zooming In’ on the EAGER Register
Prof. Norman Delanty, Consultant Neurologist, and Future Neuro Research Nurse Sarah-Jane Byrne, introduce parents to the Epilepsy-Associated Gene-Ready Register (EAGER). This is a rare disease epilepsy register for genetic epilepsies being developed at the Science Foundation Ireland (SFI) FutureNeuro Research Centre, curated by RCSI. The aim of the register is to bring together a list of individuals (and families) with complex epilepsy with known causative genetic mutations.
‘Zooming In’ on Seizures
Siobhan O’Malley, Advanced Nurse Practitioner, Templestreet Children’s Hospital, CHI, presents an overview of epilepsy and seizure types. Siobhan discusses what seizures are, how they originate in the brain, the different types of seizures and the impact they have. This is a great practical overview of seizures for parents.
Family Day Out October 2022
We had an amazing day coming together as a community at the Avon in Blessington. We had a fantastic experience for all the family with rock-climbing, zip-lining, archery, kayaking, and of course a delicious lunch. Make sure to sign up to our mailing list to keep up to date with our latest news and events.
