Narcolepsy ireland confernce for World narcolepsy Day 2023

On the 16th September Narcolepsy Ireland hosted their first World Narcolepsy Day Conference in Ireland -  to coincide with World Narcolepsy Day on September 22nd.

105 people braved the wet morning to join the proceedings in the Louis Fitzgerald Hotel in Dublin.

The event was generously sponsored by Narcolepsy Ireland, Sound, Avadel and Bioprojet and we want to extend our thanks for this kind support.

After everyone was seated and settled, a quick introduction from members of the Narcolepsy Ireland board and we started with the first of our 6 speakers.

Dr Barry Kennedy – respiratory and sleep medicine consultant in St James hospital in Dublin – was first to speak. Dr Kennedy spoke on the topic of Current and Future Drug Treatments in Narcolepsy. It was an incredibly informative session which delved into the neurobiology of sleep, wakefulness and narcolepsy and of how various medicines used in the treatment of narcolepsy actually work on brain function. Dr Kennedy also spoke briefly about the advancement of medicine and the current status of various clinical trials.

Next up was a late addition to the schedule. Dr Ailin O’Dea - Principle Clinical Psychologist at St James hospital Dublin - was incredibly accommodating to the packed schedule and was able to pack a lot of really useful information into a short session on the Psychology for Narcolepsy Service in St James. Dr O’Dea explained how the service worked, the route to get referred for services and provided a number of useful resources for future reference.

Then we had a pre-recorded session with Ragy Tadrous – a PHD candidate in the University of Leeds. Ragy did his research masters in Trinity College Dublin on Physical Performance on people with Narcolepsy and how that affects quality of life and symptom severity. Ragy presented the details of that research including health related quality of life, physical wellbeing and perspectives of people with narcolepsy. Ragy concluded his session with conclusions and clinical recommendations.

We took a short break for refreshments and a chance to meet and share experiences with other attendees.

After the break our keynote speaker – Dr Anne Marie Morse - presented an emotional and incredibly informative segment called Stop Surviving! Start Thriving! Envision and Attain Your Best Days and Nights. Dr Morse is an adult neurologist with special qualifications in child neurology and a board certified and fellowship trained sleep medicine specialist. She is Director of Child Neurology and Pediatric Sleep Medicine at Janet Weis Childrens Hospital – Geisinger Health System Pennsylvania.

Narcolepsy Ireland had reached out to Dr Morse earlier in the year to see if she would like to support the event with a remote dial-in session. Dr Morse was immediately 100% supportive and very generously offered to fly to Ireland to speak in person.

Dr Morse spoke to a rapt audience with incredible depth of knowledge and amazing empathy. She also generously gave time to provide informative and considered answers at length to the many, many questions from the attendees.

The support Dr Morse has shown to PWN of Ireland has been incredible and we are touched and grateful for her time, her knowledge and her friendship.

Running slightly over schedule we had the only speaker of the day who actually herself has narcolepsy. Hilary Lyons is a secondary school teacher. Her role as assistant principal is to provide support for students with additional needs in her school. Hilary gave an insight into how narcolepsy affects children and young people in education and the supports and accommodations that are available. Hilary also was kind enough to share her own narcolepsy journey and her path to thriving.

Our final speaker was Majella Hayden. Majella is the senior Neurology Dietitian in the National Narcolepsy Unit at St James. As we had gone well over our planned schedule at this stage, we were grateful to Majella for staying on well after our planned running time. Majella presented on eating well, nutritional challenges in narcolepsy and dietary patterns. She provided some great advice on various routes to include diet in the overall holistic approach to managing narcolepsy and also provided a useful list of available resources.

To close Tadgh Kennedy from SOUND, spoke about some of the charity activities during covid,  initiatives in progress and plans for the future.

A lot of time and effort goes into planning a day like this and we want to extend a huge thank you to all involved. Firstly to those behind the scenes to make sure the day came together and ran smoothly, to the doctors from St James including Dr Deirdre O’Rourke who attended and was extremely supportive of the event, to the speakers who provided information, support, offered hope and support across a range of topics, to our sponsors Narcolepsy Ireland, Sound, Avadel, Bioprojet who also supported in person at the event on the day.

We’d also like to take a moment to thank all the attendees. For many it was the first narcolepsy event they had attended and their first time meeting other people with narcolepsy, or their loved ones. The engagement from the audience is where the real value is measured and we were really delighted that it became an interactive session, with questions, insights and sharing from the group in the room. The atmosphere was very positive and very warm and we are hoping some friendships were formed and everyone took something from the event.

Slides and resources from the event will be available soon.