Blog

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

In 2016 the Neurological Alliance ran a patient experience survey, gathering over 7000 responses, from patients with neurological conditions living in England (see previous blog post). The findings were used to campaign for better services and support for people with neurological conditions.

We are pleased to introduce to you Linda Reynolds who has joined us as Helpline and Benefits Advisor.

Linda is married with one adult daughter and with a close relative who has narcolepsy and cataplexy. She has a rather eclectic work history ranging from lecturing to making designer wear, managing manufacturing departments and shops and ending as a civil servant working on Tax Credits and latterly Universal Credit.

We look forward to working with Linda to offer support and in particular help with benefits to the UK narcolepsy community.

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.