Our crowdfunding campaign on Indiegogo has been officially launched. We now need your help to hit our $30,000 target before the end of March. In this week’s blog we let you know how you can help, and where your money will go.

Our new campaign launched just yesterday, and we have already raised over $3000. However, we still have a long way to go, and we need your help to make sure we can bring patients to our trial site in Liverpool from across Europe. To watch our campaign video, and find out more about the campaign, head over to the campaign page now.


The Research

The aim of the research is to discover the best age for patients to begin treatment in order to prevent them ever experiencing the debilitating symptoms of this disease. Last year you helped us raise the money needed to launch our big international clinical trial. Your support and generosity were incredible.


However, while the trial is going well, and we hope it will prove the drug to be effective, we still don’t know at what age to start treatment. Given too early and our scientists are worried potential side effects of nitisinone could be harmful to young children. Given too late and much of the microscopic damage from Black Bone Disease may have already started.

“It really is crucial that we find out what age to start nitisinone for patients so they do not develop any of these debilitating symptoms” Ann Kerrigan, AKU Patient

To get this right, we need your support again. You can help to share the campaign on social media, and with your friends and family. If you comment on the campaign this will also help to get us noticed. And of course, you can even fundraise for us and donate to help us reach our target.

Where Will Your Money Go?

We have already raised the money for the medical work needed as part of the trial, but we still have no funds for patient support. We need to raise $30,000 to allow us to fully support at least 15 patients to attend the trial.

As Black Bone Disease is so rare, we need to factor in travel costs from across Europe. Our older patients can also be very disabled, and need to bring a carer with them so they are able to attend the trial. We want to ensure this is made possible for every patient who needs it, so everyone who wants to can take part in the study.

Infographic of spending
Spending summary

You can find out even more about where your money will go on the campaign page itself.

Some Fundraising Ideas

If you would like to fundraise for us, please let us know, and we will support you every step of the way. In our last campaign 2 years ago lots of people came up with creative ways to raise money for the cause, making it a huge success. Here are just a few ideas:

Cake sales – Bake some cakes and sell them at your local school, community centre or church! You can even host a charity tea party
Curry nights – Last year one of our supporters held several charity curry nights, with friends and family paying for some excellent home cooking
Non uniform days – whether in a school, or at work in the office, these fun days always go down well, and raise awareness as well as money
Get sponsored – set yourself a challenge, and get your friends and family to sponsor you to complete it.

For more tips, see the fundraising page on our website.


We have some exciting perks up for grabs for those of you who do wish to donate. For just $24 you can get yourself this lovely static window sticker to go in your car or house.

If you donate just $48 we will send you one of our classic campaign wristbands.
We also have some limited edition tote bags up for grabs, with our unique campaign logo on the side.
You could even get yourself a tour of the BBC studios in London accompanied by a former BBC anchor.

To see the full list, and find your ideal perk, head over to the campaign page now. Thank you for giving us your support.

If you would like to find out more about the campaign, or would like us to publish your story of living with alkaptonuria, please get in touch with Sorsha by emailing [email protected]