So if you are thinking of becoming one of our fundraising heroes (well done, good decision – kudos to you!) why don’t you check out a few of the stories below…they are sure to give you some motivation and make you see that although it can be challenging, volunteering and raising funds for a charity can be an amazing 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. Gilbert’s JustGiving page remains open and you can continue to support it, here.
If you’ve been a member of the NPUK community for a while you most likely have heard of the Annual Niemann-Pick Golf Day, which celebrated its 16th year in 2022.
The Annual Niemann-Pick Golf Day was created and organised by fundraising hero, Craig Mathieson, who is uncle to Lucy Mathieson, who sadly lost her fight with Niemann-Pick disease type C in 2007. In Lucy’s memory and to honour her legacy, the Golf Day returns every year.
In 2021, like every year, this day was full of fun (and fundraising) for Niemann-Pick UK, to help us to continue the work we do. We even had the incredible news, which featured in local paper the Sunderland Echo, that the day raised over £8,000 which meant smashing the £100,000 fundraising target accumulated in the last 15 years. Terrific! This event is truly a fundraising inspiration, and we look forward to many more Golf Day’s in the future.
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!
Every year our ever creative and dedicated NPD “Super Scientists” (it’s official) organise a fundraiser in the lead-up to our Annual Family Conference and Interactive Workshop, in order to raise much-needed funds for Niemann-Pick UK. And every year, they go above and beyond, and show what teamwork really means!
In 2021, although ongoing COVID-19 restrictions limited NPUK’s plans for Conference, the Super Scientists lived up to their namesake and were determined to complete their fundraiser. The team did the equivalent distance (70 miles) around Oxfordshire and Buckingham, cycling 50 miles from the Oxford University Department of Pharmacology to the Old Post Office B+B in Ardley, then cycling a further 3 miles to Somerton, then changing to canoes and paddling 10 miles to Thrupp. The final 7 miles into Oxford were completed on foot, to round the journey up to 70 miles. I’m exhausted just typing that mammoth fundraising challenge out, terrific work! We can’t wait to see what our Super Scientists get up to in 2022… no pressure!
Couple Emil and Jen completed an absolutely astonishing fundraiser in 2021, the 4x4x48 challenge, running 4 miles every 4 hours for 48 hours. Yes, that even includes a run at 4am! The pair raised an amazing £1,263 for our small charity, and we were so honoured that they thought of us.
The drive and determination of our fundraisers always astonishes us, and Emil and Jen were no exception. They took on this fundraiser during a difficult time for many, due to Covid-restrictions and limitations on daily life but remained positive and motivated throughout … a true inspiration. You can take a look at what they got up to via this incredible video talented filmmaker Emil created.
Every single person who has fundraised for NPUK, be it via a Facebook Birthday Fundraiser or a Tough Mudder challenge, is a fundraising hero to us, and every fundraiser created in the name of NPUK goes directly towards supporting NPUK families by raising awareness, providing practical and emotional support, advice and information and continuing the facilitation of research into potential therapies. So if you have a fundraising idea, however small, or would just like to learn more about fundraising for NPUK, get in touch with our Fundraising Officer Jenny Charman via email: jenny@npuk.org.
03.04.24
Jackson Pountney, a PhD student at Aston University in Birmingham, needs your help. Jackson is undertaking a research project that will help us to better understand the impact of NPC on quality of life. This important work will help to advance understanding of NPC and support access to treatments in the UK and beyond...
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