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Fundraise for NPUK

We know we’ve said it one hundred times before, but we’ll say it again just for good measure: we survive as a charity solely on the strength of donations raised by grants and fundraising. Without these we simply couldn’t exist, and as a result we wouldn’t be able to provide vital care and support for those individuals and their families and friends affected by Niemann-Pick disease(s)…and that’s why small charities, like Niemann-Pick UK, can often find themselves struggling when it comes to funding. Which is exactly why we refer to each and every NPUK fundraiser as a hero, because to us…they truly are.

But in case you are wondering why you should get involved, and what sort of change you can really make as one of our amazing fundraisers, we’ve put everything you need to know into the official NPUK Fundraising Guide – your one-stop-shop for fundraising with NPUK (see below, download available here).

NPUK Fundraising Guide

Stories: Our Heroes!

Sometimes the best inspiration comes from seeing others in action; as this can often spur us on, and push us to do things we previously thought impossible. This is true with fundraising more than anything.

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.

Annual Niemann-Pick Golf Day

(Craig Mathieson and supporters)

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 is celebrating 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.

The Big Chop

(Caitin Reid)

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!

NPUK’s Super Scientists 

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 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!

4 X4X48 Challenge

(Emil and Jen Pruden)

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. 

Gift Aid

If you’re a UK tax payer you can Gift Aid your donations to NPUK – making them worth 25% more to us, but at no extra cost to you!

You see we are able to claim back the tax you have paid on your donation (at a rate of 25p for every £1 you donate) through this scheme. So just for a quick example, for every £10 donated, we can claim an extra £2.00 from the Inland Revenue…which can go directly towards our charity’s core functions – the care and support of those affected by Niemann-Pick diseases.

But wait – it gets better! If you happen to be a higher rate tax payer: so that’s an individual who pays tax at 40%, the amount we are able to get back is a little higher – and instead works out at as 25p for every £1 you donate! And again, if you are in the highest rate of tax payers: paying tax at 50%, it works out as 37.5p for every £1 donated. Making it very worthwhile indeed for you to sign up!

Once you have signed the Gift Aid Declaration Form (see below), we can claim Gift Aid on any future donations you make to the charity as well – making it even easier for you to help NPUK, and all at no extra cost to you…it’s a no-brainer!

This additional income really does make a huge difference, so if you are a UK tax payer – please, please, please, don’t forget to sign up and be part of the scheme! :

Information we need to claim Gift Aid:

  • Your full name (no nicknames please, Monsieur Anonymous!)
  • Your home address
  • Details of your donation, such as the amount and date given (this must be a personal donation – sadly we can’t claim Gift Aid on donations from company accounts)
  • Confirmation that you are a UK tax payer
  • And lastly your filled-out declaration form!

The last one is an important one, as using that we can claim Gift Aid on all of your donations in the last four years and then on all future donations as well!

Once you have become a Gift Aid donor, please let us know if you stop paying tax or if you change your name/address so that we can update our records.

Any Questions?

If the concept of giving money to charity, at no cost to you, has you raising a curious eyebrow – then join the club. But it truly is a fantastic scheme and can help NPUK continue with all of our important work!

But if you have some questions then don’t hesitate to get in touch with our Fundraising Officer, Jenny Charman, who is happy to support you. Email Jenny: jenny@npukorg or call: 0191 415 0693

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