Spread the Word, Make a Cure a Reality

We have worked tirelessly to get AKU patients the care and treatment that they need.

In 2012, we established the world’s first treatment centre for AKU: the National AKU Centre. Following that, we received funding for our DevelopAKUre clinical trials to test the world’s first treatment for AKU. Many of you will have already heard a lot about the clinical trials of nitisinone, especially those who took part in our first clinical trial (SONIA 1).

What many of you don’t know is that we’re still missing vital funds, primarily for patient and carer travel. We’ve raised enough for all of the medical tests and some of the patient costs, but we’re still missing $98,000.

That’s why we’ve started an online campaign to raise these funds, which will launch on the 1st of September.

Help us spread the word
One of the ways you can help us is by spreading the word of our upcoming campaign.

All you have to do is sign up to our page on Thunderclap, a website created to raise awareness of promotions and causes, through your Facebook, Twitter or Tumblr account. You then agree to send out a message of support at the same time and same day as everyone else: 12pm on the 1st of September. This will announce the start of our campaign, and help create a lot of conversation about AKU and our fundraising.

To support us this way, all you need to do is head to this page. Sign up by just clicking a button, agree to send out a message, and even adapt it if you want! Supporting us is that simple.

Asking your friends and family to do the same would also be a big help, because if we don’t reach our goal of 100 supporters then no messages will be sent out. So please forward this e-news and tell everyone you know!

Our biggest online campaign yet
Indiegogo is a crowdfunding website, designed to allow people to fundraising online in a big way. Crowdfunding is a way for supporters to help fund projects by collecting small contributions from a large collection of people online.

On the 1st of September, our campaign on Indiegogo will go live to the public for only 20 days. That’s the amount of time we will have to get the money we desperately need to support AKU patients.

For 20 days we will be updating the campaign daily, raising awareness of AKU through patient and carer stories, research updates and more on how the money will be used. We will be working non-stop to raise the funds, in order to ensure our patients have all of their needs met during the clinical trials.

Please do tell all of your friends, family and your colleagues about the launch of our campaign on the 1st of September. The first to donate will be the first to receive our perks, which you can find out more about on the day of the launch.

Why $98,000?

The reasons we need a further $98,000 is to allow us to:

  • Bring patients from across the world to our clinical trial centres. We believe patients shouldn’t have to pay anything towards taking part and getting the help they need.
  • Allow patients to bring carers with them when they attend the trial. There is currently no funding available for travel or accommodation for carers. As some of the patients are extremely disabled, travelling long distances by themselves can be extremely daunting.
  • Help care for them properly while they are on the trial. Many of them are very disabled and suffering. In some cases, we may need to hire specialist ambulances for those who are extremely disabled but still want to participate. 
  • Support the work of the AKU Society and our sister societies across the world. 
  • Organise events across Europe in order to give AKU patients and families everywhere access to information about the disease and the trials. 

All we need now is your support.

Please spread the word on Thunderclap, tell all your friends and family about the launch on the 1st of September, and support our crowdfunding campaign on Indiegogo. With your help, we can reach our goal and help AKU patients everywhere. 

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