Research

Thames Valley Research Meeting

It was fantastic to meet up with other NPC charities (NP UK and NP Suisse) and a number of NPC academics on Wednesday at the Academy of Medical Sciences. Thanks to Professor Fran Platt (Platt Lab) for organising the meeting and great to discuss the latest on various research avenues including Gene Therapy; Armicolmol; Cyclodextrin;…

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Publication of Copper Trafficking and Redistribution Research

We are delighted to have been involved in part funding this research which involved scientists from 3 laboratories in the UK: Fran Platt’s lab in Oxford providing the biology, John Spencer’s lab in Sussex providing the chemistry and Philip Blower at Kings College London providing the imaging expertise. A great collaboration that has advanced our…

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Universal Care pick the NPRF as their Charity for 2019

A massive thank you to the staff at Universal Care for picking the NPRF as their charity for 2019. We are very grateful to them for their £5,000 sponsorship and the awareness that they are giving us this year.   We hope to soon have news about a funding project that we will use their…

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High March School’s One Night in Venice Ball

Back in July David, Sue, William and Rebecca were delighted to attend the drinks reception and help run the Heads and Tails at High March’s Summer Ball!  Rebecca spent 8 wonderful years at the school and we are so grateful for their continued support. It was a beautiful summer’s evening and the whole event was…

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NPRF approves its 16th grant

The charity and Prof John Spencer’s lab at Sussex University signed its latest grant on 4 Aug 2017. This is the charity’s 2nd grant supporting John’s work and its 16th overall.  In total the charity has now committed £577,000 to research into NPC, £100,000 to Sussex. The grant is to support John’s work looking to…

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They Did It! Coast-2-Coast Success!

Congratulations to Rob Trophy and the team for completing their Coast-2-Coast challenge at the weekend.  To quote Rob – “It was amazing and brutal in equal measure!” It’s not too late to support them, just follow this link!  https://mydonate.bt.com/fundraisers/coasttocoastfornprf Thanks to the whole team for taking on this challenge and raising research funds and awareness…

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Ursodeoxycholic acid treatment in NPC

This is one of the drugs that William has been on for several years now following research that the NPRF funded through the Platt Lab in Oxford.  Just one example how your support over the years has been put to good use!  Thank you, as always, for your ongoing support.https://wellcomeopenresearch.org/articles/2-75/v1

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NPRF approves its 15th grant

The charity and Prof Fran Platt’s lab at Oxford University signed its latest grant on 2 Aug 2017. This is the charity’s 6th grant supporting Fran’s work and its 15th overall.  In total the charity has now committed £550,000 to research into NPC, £388,000 to Oxford.  This latest grant builds on the vital infrastructure support…

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CTD enrolls first patient in EU trial

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…

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NPRF team taking on the Race to the Stones

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…

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