So, if you’re considering becoming one of our fundraising champions (brilliant choice, well done – hats off to you!), why not take a look at some of the stories below? They’re bound to give you a boost of inspiration and show you that, while it can be a bit tough at times, volunteering and raising money for a charity is a truly fantastic thing to do…
In June 2022 Gilbert Maguire completed an epic “Walk 4 Asa” (a 100km walk from Berwick Upon Tweed to Longhorsley in Northumberland) to raise funds for our charity and awareness of NPD. Gilbert was inspired to take on this challenge by his nephew Asa Burnside (ASMD NPA) and his loving parents.
In what was a historic and humbling moment, Gilbert absolutely smashed every fundraising target he set…raising well over £100, 000 in total and counting, which will go directly towards supporting other families and the ongoing work towards research and future therapies.
If you’ve been part of the NPUK community for a while, you’ve probably heard of the Annual Niemann-Pick Golf Day, which marked its 19th year in 2025.
The Annual Niemann-Pick Golf Day was started and is organised by fundraising champion Craig Mathieson, uncle to Lucy Mathieson, who tragically lost her battle with Niemann-Pick disease type C in 2007. In Lucy’s memory and to celebrate her legacy, the Golf Day comes back each year.
In 2024, as with every year, this event was packed with fun (and fundraising) for Niemann-Pick UK, helping us carry on our vital work, pushing the total funds raised over the past 18 years well beyond the £125,000 mark. Fantastic! This event remains a true fundraising inspiration, and we’re excited for many more Golf Days to come.
Caitlin Reid, followed a long line of people in Niemann-Pick UK’s fundraising hall of fame, who have taken the plunge and cut (and shaved) their hair… all in the name of raising funds for NPUK!
Caitlin had an incredible 30 inches of her cut-off in a bid to raise funds for both Niemann-Pick UK and Animals Asia, a charity devoted to improving the welfare of animals across Asia. The grand total, plus Gift Aid, came in at an astonishing £1,227.25, which was split between the two charities… and Caitlin got a new, fantastic hairstyle to boot!