Snap A Picture, Get Involved: Let’s Cure Black Bone Disease

Snap A Picture, Get Involved: Let’s Cure Black Bone Disease

Snap Those Pics
Now you can get involved and spread the word of our fundraising simply by taking a photo. And you can be as creative as you like!

You can either print off the photo with the words ‘Help Us Cure Black Bone Disease’ by downloading it here, or create your own with the same words. Then take a photo with it, either by yourself, with your friends or family, or of a landmark where you live. Then share it! Post it on our Facebook, Tweet us with the hashtag #HelpCureAKU or email jenni@akusociety.org.

Find out more about our campaign here.

Raising Awareness Among Doctors

Hana and Nick attended the ICIEM conference in Barcelona last week.

The ICIEM is short for International Congress of Inborn Errors of Metabolism. Alkaptonuria, or AKU, was the first inborn error of metabolism discovered, which is why it’s referred to as the world’s first genetic disease. Attending the conference allowed them to meet doctors and health professionals from all over the world specialising in metabolic disorders such as AKU.

Hana started off our awareness campaign in Barcelona. To the right, is the first picture of the campaign – with the whole of Barcelona in the background.

Over $26,000 already?!

We are absolutely overwhelmed by the support we have received for our online fundraising campaign on Indiegogo.

Only 12 days in, we have raised over a quarter of our goal for the clinical trials. We just want to say such a big thank you to you all for your support; this money will go a long way to ensure the care and comfort of our patients. And we’ve still got another 36 to go!

If you haven’t seen it already, you can take a look at our fundraising campaign here. And if you would like to find out how we’re planning to spend the money we raise, head over to our DevelopAKUre blog post.

Racing to Cure AKU
 

Alex Ridley helped raise funds for the Indiegogo campaign by running a half marathon!

She completed it in an amazing two hours 25 minutes, finishing on a rather nasty hill at the end!

Nick, our Chairman, also ran the Cambridge Spartan race to kick off our Indiegogo campaign. He ran through mud and freezing water, crawled under barbed wire, climbed ropes and much more – all in aid of finally curing AKU.

You can still support them by heading to our Indiegogo campaign now. Don’t forget to check out the perks available – nab a limited edition AKU t-shirt or a trip to our labs in Liverpool!

Thank you to everyone for your support!

 
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