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.

Access the full presentation: Current and Future Drug Treatments in Narcolepsy

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.

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.

Access the full presentation: Psychology for Narcolepsy Services

Dr Ailin also provided details of useful online resources:

• CBT for Narcolepsy Dr. David O’Regan - https://www.youtube.com/watch?v=heS_1ccU_9Q

• Beaumont Hospital MARC site (Mindfulness and Relaxation Centre) - http://www.beaumont.ie/marc

• Get Self Help website: https://www.getselfhelp.co.uk/

• App: UCLA Mindful App  – Body Scan for Sleep

• Progressive Muscle Relaxation – suggest googling this technique

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.

Access the full presentation: Stop Surviving Start Thriving

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.

Access the full presentation: Support and accomadations in secondary schools for students with narcolepsy

Majella Hayden 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.

Access the full presentation: Nutrition & Narcolepsy