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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YouTube channel launched

22 January 2016

Today we are pleased to announce the launch of the Narcolepsy UK YouTube channel.

Over time it will grow, but for now we have 3 videos from our 2015 conference. If you were not able to make it there in person, or if you want a refresh on some of the presentations then check out our new YouTube page by clicking here.

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Availability of Sodium Oxybate - An Update January 2016

11 January 2016

A substantive hearing on an application for Judicial Review of a refusal by NHS England of funding of sodium oxybate for a child is expected to take place in February 2016.

NHS England still does not have a Clinical Commissioning Policy in place for either adults or children.

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30 Walks in 30 Days Challenge

9 December 2015

After all the excesses of Christmas, most of us sit down and make a list of resolutions about how our new year is going to be better than the last. Healthier eating, more exercise, studying that new language we have always said we wanted to learn.  We all want that 'better me'.

Why not kick-start that 'better me' health regime and give to charity at the same time? Joining our 30 Walks in 30 Days Challenge for January 2016 is a great way of getting fit and helping others at the same time.

Our Funding Target

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Narcolepsy UK clothing

20 November 2015

Narcolepsy UK clothing now available

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Permission Given for a Judicial Review into Sodium Oxybate Funding Refusal

20 November 2015

On Friday 13 November 2015, Narcolepsy UK was at the High Court to support an application for a judicial review of NHS England’s refusal to fund sodium oxybate (brand name Xyrem®) for a child with narcolepsy in England, where this medication was recommended by the treating Consultant.

With the benefit of legal aid, and an exceptionally dedicated legal team (Ian Wise QC, Monckton Chambers, Peter Todd and Freya Colvin, Hodge Jones & Allen Solicitors LLP) permission for a judicial review of NHS England’s refusal to fund sodium oxybate has been given.

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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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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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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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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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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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