The story of Narcolepsy UK

The history of Narcolepsy UK goes back over forty years.

In 1970, Dorothy Hand (pictured) was finally diagnosed with narcolepsy, after having spent twenty years visiting doctors in Ireland, England, Canada and America. After herself researching the condition in the years that followed her diagnosis, in October 1981 Dorothy wrote to local newspapers, TV and radio stations about setting up a self-help group for people with narcolepsy. Granada TV picked this up in a programme called ‘This is your right’. The broadcast produced an overwhelming response, and Granada forwarded all the letters received to Dorothy.

A meeting room was booked in November 1981, and on a cold snowy day fifteen people arrived for the first meeting of the United Kingdom Association for Narcolepsy (UKAN). Most of those people had, as is common to this day, never before met another person with narcolepsy.

In 1984, although Dorothy had not worked directly for the NHS, her voluntary work for UKAN was recognised by an NHS Silver Award.

In 1989, Dorothy became Honorary Vice President of the association, Professor Parkes was elected President, and the Association became a Registered Charity.

Over the years, the organisation (Charity No 326361) continued to grow and develop, and in 2009 changed its name to Narcolepsy UK. In September 2011, a Company Limited by Guarantee (Company No 07790071) was formed under the Narcolepsy UK name and was registered as a charity in England & Wales (No 1144342) shortly afterwards. The company commenced charitable activities in January 2012, at which point it took over the assets of the unincorporated association Narcolepsy UK.

In October 2012 the unincorporated charity (No 326361) was amalgamated with the charitable company (No 1144342), thus creating one legal entity. Scottish Charitable Status (No SC043576) was granted in November 2012.