Narcolepsy UK partners with organisations across six continents to create inaugural World Narcolepsy Day on September 22nd, 2019
Narcolepsy UK is excited to announce that it is coming together with 24 organisations around the world to establish World Narcolepsy Day. This ground-breaking day, which will take place on Sunday, Sept. 22, 2019, will be dedicated to raising critical awareness for narcolepsy on a global scale.
Following an approach by the Irish litigation law firm, Michael Boylan, acting for c.80 adults & children affected by Narcolepsy arising from the administration of the Swine Flu vaccine Pandemrix® between October 2009 and the end of March 2010, our Chair Matt O’Neill will be supporting them in their pursuit of recognition of damages caused and their claim for compensation. Pandemrix® was manufactured by GlaxoSmithKline.
People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance. The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.
Recently a person with narcolepsy, Heather Korbey, was interviewed on the BBC radio Northampton "Chaz Harrison" programme. We are grateful to Heather for taking the opportunity to help spread awareness of the condition and the reality of the way it affects her life.
The radio show is available to stream until 28th February 2019. Heather speaks about narcolepsy at around the 40 minute mark. It can be found by following this link: https://www.bbc.co.uk/sounds/play/p06wttll
During the recent Narcolepsy UK 2018 Conference in Manchester, we were able to livestream some of the speakers on social media. This was great for keeping people not able to travel to be with us engaged with activities, but was not able to offer the full experience. In particular, slides were not visible and sound levels were very low due to the limitations of the equipment used.
Narcolepsy UK trustee and science writer Henry Nicholls recently published a book, "Sleepyhead: Narcolepsy, Neuroscience and the Search for a Good Night". In relation to this he was interviewed, with 45 minutes of air time, talking about narcolepsy, cataplexy and sleep disorders on Jefferson Public Radio in the US yesterday morning. The full interview is here.
