Blog

Keep up to date with all the latest news from the world of narcolepsy, and some of the things we are doing to help.

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Hope for the future?

27 September 2015

An interesting development suggests that a cure for narcolepsy might one day be possible.

Narcolepsy is now generally believed to be an auto-immune disorder resulting from the destruction of cells within the brain that are responsible for the production of hypocretin. As such, replacement or regeneration of those cells might lead to a treatment for narcolepsy that actually cures the condition, rather than just alleviates the symptoms.

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Hammock Diary - August 2015

Matt O'Neill
27 September 2015

I think like many of you with narcolepsy, I have been “enjoying” the high temperatures of early summer to a mixed degree. I certainly struggle with my energy when the mercury rises along with my perspiration, inability to concentrate and general irritability!

It’s certainly been great hammock weather but only in the shade as sleeping in direct sunshine turns my head very pink and I’ve found it impossible to combine both hammock and a hat. It’s much more difficult than it sounds.

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Changes of personnel

27 September 2015

Grants Fundraiser Clare Baldwin has left the role after four years, but won’t be saying goodbye to Narcolepsy UK, as she has joined the Board of Trustees.

Clare said: “The job has been hectic, challenging but truly rewarding. It’s a tough fundraising climate, I’ve had to call upon my most compelling letter writing skills and persuasive telephone manner to beat other great little charities to shrinking pots of money.

“But what a great boost when a trust, foundation or the Lottery puts its faith in – and cash behind – our work supporting the narcolepsy community.

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Important ruling in Pandemrix case

27 September 2015

The link between an upsurge in the number of cases of narcolepsy and the Pandemrix swine flu vaccine has been acknowledged by the government, and opened the door to claims for compensation under the Vaccine Damage Payments Scheme. That scheme is a statutory regime under which anyone found to have suffered a severe disability as a result of certain vaccines is entitled to an award of £120,000.

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Fundraising pledge

27 September 2015

Following disturbing reports in the press about the way some charities fundraise, this seems an appropriate time to let you know that not only does Narcolepsy UK value all of those generous people who donate to the charity, we also respect your privacy.

We are currently signing up to the new Fundraising Standards Board Code of Conduct, but are confident that we have already met their needs. We want to share with you our pledge that:-

• We do not employ external agencies to collect money on our behalf.

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A day full of positives in Germany

Matt O'Neill
11 May 2015

Narcolepsy UK chairman Matt O’Neill reports on what was a fruitful trip to Germany for European Narcolepsy Day.

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Big Meet-Up celebrates European Narcolepsy Awareness Day 2015

11 May 2015

NARCOLEPSY UK Big Meet Up was our way of celebrating European Narcolepsy Awareness Day 2015.

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Narcolepsy UK chairman, BBC radio interview

8 March 2015

Narcolepsy UK chairman Matt O'Neill was interviewed as part of a program on sleep disorders for BBC Three Counties Radio show "Shrink Wrapped". Original air date 8th March 2015.

You can listen to the programme in full here

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