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'I am the Patient Support Officer with the Alkaptonuria (AKU) Society. In January 2014 I will be 50. I have set my self a list of 50 things to do before I'm 50 including, giving myself the challenge of raising £500 for AKU. The last thing on my list is to have the greatest 50th celebration ever.

I love my job and the patient group I work with. I admire their determination and strength and that even when faced with adversity, they take everything in their stride. They are selfless in all that they do, providing great support for each other, always eager to do something because it will benefit everyone in the long term and not just themselves. It is for this reason, that I want to give something back to them all.

Alkaptonuria, or AKU for short, was the first genetic disease to be discovered more than 110 years ago. Despite this, it still has no cure, and the medical world remains largely unaware of its existence and impact on everyday life. 

AKU is also known as Black Bone Disease. This is because an acid in the body accumulates at 2,000 times the normal rate, attacking the bones and turning them black and brittle. It causes severely debilitating osteoarthritis, heart disease, and other serious health complications. Patients become increasingly disabled as they get older.

I have asked that my family and friends who might consider buying me something for my 50th, to donate that money to AKU instead. I hope that I can achieve my goal of £500 and anything over that would be a fabulous bonus for a great cause.

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