On behalf of the board of trustees and everyone at Narcolepsy UK, we’d like to welcome Amanda Molloy to the board and say a fond farewell to Steve Jones and Hugh Davies-Webb who stepped down in 2019. Matt O’Neill will continue as Chair & has now stood down from the board of the Neurological Alliance England to allow him to focus more on his core activities for Narcolepsy UK, raising awareness and fundraising, particularly in the corporate world.
Recently we have been seeing ongoing issues with the seals of Xyrem bottles and also the quality of the inserts.
This has been reported to UCB Pharma and they are investigating but after discussion with them, we have agreed that we should encourage anyone affected by this to use either the MHRA Yellow Card system and/or the UCB Cares telephone line to report their concerns.
Shola Ariyo is looking at host a London area meet up in either late February or early March. She has asked if anybody interested could "like" the post she put on Facebook (on Jan 3rd) about it so she has an idea of numbers and can communicate with people to organise the event.
So many times this year, I have been asked what we (Narcolepsy UK) do and I have responded with:
We try to do whatever it takes to provide the support that people need, where they need it.
It could be education, employment, home, family, social life or access to benefits, medicine and treatment options. It may be simple or complex, we will still help.
Your nomination really counts. £1,000 could make a real difference to the work we do supporting all people in the UK impacted by narcolepsy (or idiopathic hypersomnia). Your nomination could be the one that helps us win. £1,000 is a significant figure for a charity of our size, and would help us keep our free support helpline active.
Click ‘nominate now’ on the website and enter our details (the charity number for Narcolepsy UK is 1144342). Thanks for your support!
We are attending our first World Sleep event and have sent Matt to showcase your #NUKCharter (Narcolepsy UK have a booth in the main exhibition hall 23rd-25th September) and take part in an official event on Sunday, September 22nd, to mark the inaugural #WorldNarcolepsyDay to which he has dedicated a huge amount of personal effort in helping to make happen along with Julie Flygare of Project Sleep and other participating groups from around the world.
Of note to anybody in the Oxford area, we have been informed that the sleep specialist Dr Ziawalla (working from John Radcliffe Hospital) has retired.
John Radcliffe Hospital said that they now have two sleep consultants; Dr Mkael Symmonds and Dr Graham Lennex. The sleep consultant specialist in Narcolepsy is Dr Mkael Symmonds.
