So far as a charity our biggest community fundraising projects have taken the form of crowdfunding campaigns. Aside from these, grant applications have been our main source of funding, alongside the occasional sponsored event organised by our dedicated supporters. We are very grateful for all of this support, and have decided it is about time we step up our fundraising efforts so we can deliver even more to our patients and service users. In today’s blog we let you know what you can look forward to.

Expanding the Team

The first big step towards increasing our fundraising efforts has been to start recruiting for a Fundraising Officer. It is always exciting when our team grows, and we are enjoying the recruitment process at the moment. Keep your eyes out for introductions in the coming months!


Our Fundraising Officer will be in charge of creating a new fundraising strategy, and building on our current fundraising activities. They will work to increase our community fundraising by hosting more events for patients and the general public, getting everyone involved in sponsored challenges, and working with our supporters to make your fundraising ideas a reality.

International Patient Workshop

Our biannual patient workshops have been a huge success over the last couple of years. However, many patients around the world simply don’t get the same level of support as patients in the UK.

We want to give patients everywhere an opportunity to attend one of our patient workshops and get the support they deserve. This is why we want to hold a special international patient workshop next year, bringing patients together from the UK and all over the world to meet each other, and learn about their disease.

We have already been given an educational grant to cover the costs of running the workshop itself, but we still need to fundraise to help patients cover their travel costs. We want to make the event as accessible as possible, so we are planning quite a few exciting events in the coming months to raise the money we need.

An Exciting Raffle

We are currently putting together a fantastic array of prizes for a raffle, which we will be selling tickets for next month! The prizes already include a huge hamper of food, £100 worth of wine, a signed John Bishop autobiography, and countless more vouchers, days out, and trips away!

If you know anyone who can supply a raffle prize to add to our list, please contact Lesley before the end of May ([email protected])

Sponsored Cycle
On 21st September the AKU Society team will be setting off from Cambridge bright and early on our way to Liverpool. Nothing unusual about that – as many of you know, we are often up in Liverpool visiting patients at the National Alkaptonuria Centre (NAC) or on our DevelopAKUre clinical trials.

However, our mode of transport will be very unusual! We will be abandoning the train, and instead hopping on our bikes to cycle the 200 mile route in 3 days. We are undertaking this epic cycle to raise funds for our international patient workshop, and we will need your support to get through this mad challenge!

If you would like to join us for our cycle, or go part of the way with us, please do get in touch. We are also looking for a cycle shop to sponsor our journey, and provide us with some decent kit to use on the way. If you know of anyone keen to lend us a hand, or simply cheer us on route, let us know! You can contact Sorsha at [email protected].

Fundraising Packs

Our next patient workshop will be held on 20th June at London Zoo Conference centre. Here we will be giving all our patients the opportunity to take home a fundraising pack to help us raise money for next year’s international patient workshop.

The packs will include a bundle of raffle tickets to sell and a sponsor form for our team cycle. They will also include a bundle of our new products to sell to friends and family; an AKU Society trolley coin, and a new charity ribbon. Both these items are only £1 each, and are great little things for friends and family to buy to show their support.

We want to know what you think of this idea to give you fundraising packs to take away. Do you think we should add anything else to them? What fundraising support would you like to see in the future?

We are looking forward to some exciting new fundraising in the coming year, and we hope you are too. If you have any ideas or suggestions for our future fundraising plans, now is the time to get in touch! You can contact Sorsha by email at [email protected].