Ball auction prizes

10th July 2017 | 0 Comments

Preparations for the Ball on 7th October are proceeding well, we now have entertainment book (a band and disco- more details to follow) and we are gathering some great auction prizes. We’ll highlight some of the prizes over the coming weeks to give you a taste of what to expect. Thanks to Stewart Goold for…

One week to go before Race to the Stones

8th July 2017 | 0 Comments

In seven days time the NPRF’s team will have started the Race to the Stones. We set off on the 100km course at 7.45am and are hoping we will finish about 13-14 hours later in Avebury. Training has gone ok, with each of us having a few injury niggles but so far, nothing too serious.…

Tables selling well for NPRF Shaken not Stirred Ball

22nd June 2017 | 0 Comments

Its 107 days to the NPRF “Shaken not Stirred” Ball! Table sales are going well, with 25 paid up to date and enquiries on a further 10. Don’t forget if you haven’t managed to get a whole table organised, don’t worry, just let us know and we can get your names on the list! Progress…

CTD enrolls first patient in EU trial

22nd June 2017 | 0 Comments

Fantastic news from CTD Holdings, who have enrolled their first patient on their IV administered cyclodextrin trial. The Phase I/II clinical trial is looking to recruit 12 patients aged between 2 and older, has a primary objective of determining the optimum dose for further study. As NPC disease is a systemic disease, it is important…

VitrX sponsoring the vodka luge at the Ball

18th June 2017 | 0 Comments

We are very grateful to VitrX Ltd and CEO Vince O’Hanlon for agreeing to sponsor the vodka luge at the NPRF “Shaken not Stirred” Ball. VitrX is a local Buckinghamshire firm which offers clients a ‘one stop shop’ solution for their technology requirements. The Ball is on 7th October 2017 and further details are available here.…

NPRF team taking on the Race to the Stones

6th June 2017 | 0 Comments

On 15th July Andrew, David, Guy, Neil and Tim will be attempting to complete the UK’s number 1 ultra marathon. The Race to the Stones is a 100km off-road race starting near Stokenchurch along the 5,000 year old Ridgeway. The race ends at Avebury in Wiltshire. Avebury is one of Europe’s largest neolithic monument and…

CTD Holdings Clinical Trial

13th April 2017 | 0 Comments

CTD Holding’s Trappsol Cyclodextrin trial is currently enrolling in two trial sites: Oakland, US and Manchester, UK.  The Phase 1 trial in the US requires patients to be 18+ and is looking to recruit approximately 12 patients for a research study lasting up to 20 weeks.   The Phase 1/2 trial in the UK is also looking…

Orphazyme trial update

4th April 2017 | 0 Comments

Orphazyme recently announced that its interventional trial of Arimoclomal has achieved its recruitment target. The company has recruited 46 NPC patients in 8 countries for this 12 month placebo-controlled trial. There are two centres in the UK; Great Ormand Street and Birmingham. William has been on the trial now for about 6 weeks (patients do not know…

Ball Tickets on Sale!

16th March 2017 | 0 Comments

SHAKEN NOT STIRRED BALL Saturday, 7th October 2017 GRAND CONNAUGHT ROOMS LONDON   Following great feedback from our 2012 NPRF Fundraising Ball, we have decided the time is right to get all our supporters together again for another fantastic evening of food, dancing, fizz and hopefully great fundraising for our important charity work. Tickets are…

NPRF Ball – 7th October 2017

28th February 2017 | 0 Comments

The NPRF’s second Ball is to be held on 7th Oct 2017 at the Grand Connaught Rooms, which was where we held the first ball back in 2012. Included within the £95 ticket price is a welcome drink, three course meal and a disco. Tables are for 10 people.