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Ways You Can Help

At NPUK we are always looking for volunteer and fundraisers to help us reach our aims of providing quality care and support for those affected by Niemann-Pick disease(s).

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And to be honest the only limit to the ways you can fundraise for NPUK is your imagination. As the list is truly endless when it comes to helping out a charity such as ours; whether that is by volunteering, fundraising, or simply by being a part of the NPUK movement.

So whether you are at a creative dead-end and need some inspiration, or perhaps just require a little motivation to get started; it’s worth having a little look below at some of our best tried-and-tested ideas.

Who knows? Maybe you’ll be our next fund-raising superstar if you…

 

Plan Your Own Fundraising Event

Setting up your own fundraising event is a sure-fire way to directly raise funds for NPUK, and importantly…it can also be a lot of fun too! People in your community and your social circle will be happy to help a good cause, especially if they can do that and have cake at the same time (it’s a win-win, surely!)

In the past here at NPUK we have had great success with raffles, golf tournaments, parties, bake-sales, and…well, a lot of things! And that’s why first-and foremost we believe setting up events is one of the best ways to fundraise for Niemann-Pick.

Collect Money in the Street

Collecting money in the street is a great way of raising funds for NPUK. In fact every year we raise money through street collection, and why we are always looking for new driven volunteers to help…the next one could be you!

Whatever type of collection you are planning we’ll happily provide the materials you’ll need…from collecting buckets, to sashes, stickers, and whatever else – we’ve got you well and truly covered. Possible venues in which you could collect money include; service stations, train stations, supermarkets, and sporting matches. However remember, some of these locations may require local authority permission – so make sure you organise that before you start fundraising.

Set up a Stall/Car-Boot Sale

By setting up a stall (whether this is food, handmade, bargain goods, or whatever else) you can help NPUK in a number of ways, namely; raising funds, providing awareness and outreach for our group, and encouraging more activity from others in the future! That’s why seemingly small stalls can actually have a HUGE impact when it comes to charities such as ours…especially when a lot of people get involved.

In order to make people aware of your stall it is important to publicise what you are/will be doing. Social media is great for this, as is posters and word of mouth – you should be proud of your efforts, so make sure they don’t go to waste.

Take Part in Sponsored Events

Sponsored events are the bread and butter of charity fundraising…almost anything can be sponsored, and the personal challenge the events can give you means it is exciting and engaging for everyone involved! People will be rooting for you, and in turn you will have very real achievements to be proud of at the end of it…all while raising money to help those affected by Niemann-Pick disease.

A few examples of sponsored events include:

  • Charity walks
  • Parachute jumps
  • 5K, 10K, half-marathon or marathons
  • Mountain climbs
  • Charity cycle
  • Sponsored head-shave (only for the very brave!)

Collect Money in your School

If you are a student (or work in a school) how about setting up a charity non-uniform day?

This can be a great way for everyone to have fun, and also raise money for NPUK, by suggesting that people come to school in their own lovely clothes instead of drab uniforms…and pay £1 (or whatever they can afford) as a donation. By taking part in this form of fundraising you can very quickly build a sizeable donation which could go a very long way in helping those affected by Niemann-Pick disease!

Have a Family Fun Day

Naturally families directly affected by Niemann-Pick are generally more involved with charity fundraising days – but we need help from everyone if we are to succeed as a charity…and that’s why family fun days are a great way to involve more and more people!

This can be in the form of sports tournaments, family outings, events, or just about anything else which brings people of all ages together for a good cause. You could charge a small admission fee for entry/participation, and award prizes for winners…what better way for a family to spend a weekend?

Set up Speaker Programmes

In many places in the UK, and indeed the world – there is a huge demand for interesting speaker(s) as people yearn to hear people speak with knowledge and passion on subjects of their particular interest (the rise of TED talks is clear evidence of this!)

So why not provide this service…but also fundraise for a good cause at the same time? Many groups achieve this aim by renting out a hall or room, soliciting compelling speakers on subjects they believe others will find interesting, and then scheduling the event! You would then promote the talk extensively, charge for admission, and also have stalls for the charity on site. This can be a lot of work, but pays off in the long run as those in attendance feel they truly “got something” for their money.

Set Up Charity Concerts/Comedy Shows

Similar to speaker programmes, charity music concerts and comedy shows (also known as benefits) can potentially be a fantastic way to raise money for NPUK. There are numerous musicians, comedians, and performers who are active patrons of charities and regularly wave their fees in order to help raise funds for good causes.

Naturally setting up such an event would come with its own unique difficulties, but the pay-off would be enormous – and something to be truly proud of!  If you decide to go down this route then you should strive to advertise the concert as widely as possible (we can help you to do this by providing social media/website posts as applicable) and then market your tickets to friends, family, and the public at large…as the wider your scope, the greater number of tickets you will manage to sell.

Well that’s all for now – but there are many, many, many more things you can do – and all for a brilliant cause, so go on…get involved!

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NPUK Statement: NICE Olipudase Alfa Decision

Yesterday, we were greatly disappointed to learn that the UK's National Institute for Health and Care Excellence (NICE) has decided not to recommend Sanofi's Xenpozyme (olipudase alfa) as a treatment for acid sphingomyelinase deficiency (ASMD; Niemann-Pick Disease) in people with type AB or type B...

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