Blog: Charity updates

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Juan reaches Land's End

6 June 2017

Juan makes it to Land's End

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London to Brighton - Another great effort!

5 June 2017

Our thanks to Louise, another one of our gallant band of fundraisers, who has walked from London to Brighton in support of Narcolepsy UK.

That's 21 hours of walking over 2 days! Louise tells us it was one of the hardest physical endurance events she has ever done, but worth every penny in view of the sponsorship of around £750 she has raised.

Well done, Louise, and thank you from all at Narcolepsy UK!

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Volunteers Week 2017

1 June 2017

1-7 June 2017 is National Volunteers Week. Narcolepsy UK would like thank all of our volunteers for contributing their free time to help support the charity. Our volunteer community continues to grow stronger each year.

Some of the things we have our volunteers to thank for are network meeting support groups, raising public awareness and fundraising for the charity.


Liam Sloan, Volunteer Coordinator

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Hitchhiking with narcolepsy

2 May 2017

Juan Nuevo is to hitchhike from Bristol to John O’Groats, down to Lands End and back to South Gloucestershire in just ten days

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Marathon Fundraising Update

1 May 2017

Marathon fundraising effort for Narcolepsy UK on 23 April 2017

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Success in Devon!

27 April 2017

Last Tuesday, 18th April 2017 Matt O’Neill and Peter Todd completed an overnight “dash” to Devon where they joined a patient on Wednesday morning to present at a “Treatment Decision Review (TDR) Panel” in an attempt to reverse a decision by an “Individual Funding Request” (IFR) Panel to refuse funding for treatment with sodium oxybate for an adult with severe narcolepsy.

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Misconception or Inequality and Discrimination?

17 April 2017

Ongoing work to remove the barriers to access to sodium oxybate for management of narcolepsy and cataplexy.

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Muddy Trainers - Marathon Update

24 March 2017

Just over four weeks to go until our family marathon effort in support of Narcolepsy UK

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European Narcolepsy Day, Palma, Mallorca 2017 - Highlights

24 March 2017

Mid-March is always our busiest time of year, with more meet-ups arranged around the country each year and the gathering of the clans at the European Narcolepsy Network “European Narcolepsy Day” meeting held in a different host nation each year and now in it’s 8th year.