2025 Symposium for Parents and Caregivers
Our 2025 Symposium took place on Saturday 12th April. We were extremely grateful to have a range of fantastic speakers including international expert Professor Andreas Brunklaus, Dr. Cristina Reschke launching DS-Time Sleep Study, Dr David Lewis-Smith outlining needs in adults and Professor Bryan Lynch sharing the background of Fenfluramine as a new treatment option.
The morning coffee and treats was a great way to start the day, with parents catching up with those they may not have seen for a while and guest speakers chatting with everyone.
Our Chairperson, Nicola Kehoe, opened the Symposium with the launch of our rebrand and new logo. Nicola also presented our 2025-2026 Strategy showing our commitments and plans to support families and raise awareness.
Professor Andreas Brunklaus, Consultant Paediatric Neurologist at the Royal Hospital for Children, Glasgow, attended as our keynote speaker. Prof Brunklaus brought us through the history of epilepsy treatments and gene identification. He discussed the possible ways gene therapy can work in Dravet Syndrome. Professor Brunklaus has been at the forefront of genetic epilepsy studies with his work and clinical trials in Glasgow. He gave the results of recent studies and how companies developing therapies are progressing their work.
Results of Phase I&II trials are promising, and improvement scores are very impressive across cognitive improvements as well as seizure control. This is truly groundbreaking work and his talk gave hope to us all.
Dr Cristina Reschke of FutureNeuro, RCSI, was the next speaker of the morning. Dr Reschke launched the DS-Time sleep study. She outlined how Circadian Rhythms work and how they can affect those with Dravet Syndrome. Dravet Syndrome is particularly affected by sleep with nighttime seizures, difficulties in sleeping and daytime tiredness. 97% of caregivers report a sleep disorder of some type in those with Dravet Syndrome. Results of sleep studies in mice with Dravet Syndrome were shown, highlighting how sleep affects the condition.
The morning ended with a very successful speed-dating style question and answer session with researchers from FutureNeuro and Gerry Cullen of Epilepsy Ireland. Participants went from table to table, briefly introducing their research and taking questions from parents and caregivers.
After a break for a lovely lunch, we all gathered for the afternoon sessions of the Symposium. Dr David Lewis-Smith, Adult Neurologist and Epilepsy Fellow, Beaumont Hospital, RCSI, highlighted the main changes in how Dravet presents and its treatment in adulthood. He continued into the practical side of how children transition to adult services and what parents should expect. Dr Lewis-Smith spoke of possible medicine changes and the other general health issues all adults face.
Finally Professor Bryan Lynch, Paediatric Consultant Neurologist, CHI, gave the much-anticipated talk on Fenfluramine in Ireland. Professor Lynch gave a history of Fenfluramine and how it was initially developed as an anti-depressant in France in the 1960s before being approved and marketed as a weight-loss drug in the USA in 1973. Some side effects limited the use of Fenfluramine in the 1990s, but the drug was seen to be effective in treating seizures in children.
Subsequent trials saw it being used to treat Dravet Syndrome and Lennox Gastaut Syndrome, and it was approved for reimbursment in Ireland in late 2024. Professor Lynch spoke about the frustration with the delay to reimbursement.
Another successful Symposium by all accounts, and we at Dravet Syndrome Ireland want to thank all for attending and contributing to an excellent day.
Images from the day are available to view in our gallery
Slides from Prof Andreas Brunklaus’ and Prof Bryan Lynch’s presentations are available to download.
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. Follow us on Facebook and Instagram to keep updated on our next events.
Our next virtual events will be the second of a two part workshop on the living grief of raising a child with complex needs. This workshop is specific to parents of children and adults with rare complex epilepsy and will be facilitated by Breffni McGuinness. It will take place on Thursday 24th July at 8pm. Registration details to follow.
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.
‘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.
