Today is the final day of our Indiegogo campaign! You still have time to donate, so keep spreading the word to make the last day a success. Read how the campaign has been going, and hear from Jess, the mother of four year old Daniel, who has Black Bone Disease.

Campaign Success!

We were incredibly excited last week when we hit our $30,000 target a whole week before today’s deadline! Thanks to your generous contributions, enthusiastic sharing of the campaign, and tireless fundraising, our crucial research is now possible.


Last week we decided to set an ambitious stretch goal of raising an extra $6000 – enough to support 3 more patients fully- in just one week. We were thrilled to find out this target was smashed last night, with our campaign total now exceeding $36,000! We want to thank everyone who has helped us in any way throughout this campaign.

The Photo Competition

Yesterday we announced the winner of our photo competition. The theme of the competition was ‘Time Is Running Out’ and we had some incredibly inventive entries. However, we did have to pick an ultimate winner. We chose the entry from 11 year old Axel in France!


We love his use of toys from different times to represent the theme. Axel is a patient with Black Bone Disease, and as we can see, he has given his full support to our campaign. We hope our research will help him in the future.

We also just had to choose a runner up, so we selected Alan’s entry. He sent his photo to us with the caption “What is the right time?”


We had some incredible support throughout this campaign. One of our biggest supporters and fundraisers has been Jess Barnes. She has rallied support from the Brighton and Hove area by organising a spectacular range of events in support of her son, who has AKU. In today’s blog, we hear what she has been up to during this campaign.

Jess – Helping us Cure Black Bone Disease

Last year, our four-year-old little boy, Daniel was diagnosed with AKU.  For any parent, hearing your child has a rare disease is devastating, but to be told that there is no cure is simply heart breaking and left us feeling very scared and helpless.

We were then introduced to the AKU Society, and we were told about the latest clinical trial already underway. It was inspiring to hear about all of the work so many people had put in, and we also wanted to be pro-active. So, when we found out about this campaign we knew immediately we had to help.


We have had an amazing month of fundraising and have been blown away by everyone’s support. Having initially shared the campaign on Facebook, we were astounded by the generosity, not only from friends and family, but of the larger community as our message spread. With the help of some wonderful people, local press and radio, we were able to get our message out there, and quickly set up a number of events.

Daniel’s only symptom is black urine and he refers to this as his ‘super hero power’. His nursery embraced this, and organised a fundraising super hero party. The kids absolutely loved it. Not stopping there, we then organised another children’s fundraising event. It was a fun-filled morning of activities, games and prizes, all donated by a local toy company.


We then went on to organise raffles, a pub quiz and a fabulous auction at our local rugby club. We auctioned off some amazing items, donated by some incredible brands and some very well-known, international sporting names.

Local support has been phenomenal, and when Brighton & Hove Albion Football Club heard about what we were doing, they were keen to lend their support and invited Daniel to be a mascot for the day. It was a fantastic experience and we were able to raise lots of awareness around the campaign and Black Bone Disease.
Two high schools have also been involved in the campaign and it has been truly inspirational to see the pupils get so involved and they continue to fundraise.

Everyone has been amazing, but we would especially like to thank all of those that are living with AKU and helping with vital research. Your efforts will ensure our little super hero, and others like him, will not have to suffer the cruel effects of this disease. For this, we are eternally grateful.


There is still time left to donate. Please help us end our campaign with a bang! Head over to our campaign page here.