"AKU patients are scattered around the world, often faced with misdiagnosis, a lack of efficient care and a lack of awareness."
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.
But, a cure may be possible.
Three years ago, our CEO and Chairman, Nick Sireau, gave up his job in order to devote his time to finding a cure for AKU after his two kids were diagnosed. During these three years, he has worked tirelessly with teams in Liverpool, the United States and across Europe to plan a clinical trial. Now a very promising treatment called nitisinone has been found. When taken early enough in life, it's effectively a cure. The real challenge is proving that this drug works in a clinical trial, in order to license nitisinone for use in AKU. The cure will then become a reality.
AKU patients are scattered around the world, often faced with misdiagnosis, a lack of efficient care and a lack of awareness. This means patients from across Europe and beyond are needed to run a good clinical trial.
But they can't do it without your help.
So far they have raised enough to pay for all the medical tests and some of the patient costs, but still need $98,000.They need this money to:
Nick's vision is for children to never suffer the pain of Black Bone Disease. With your help, they can make this a reality. Please visit www.indiegogo.com/projects/cure-black-bone-disease, and help change hundreds of patients lives.
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