Jamie Rumbelow
Running for Alkaptonuria
Fundraising for The Alkaptonuria Society
Story
Alkaptonuria (AKU) is a debilitating genetic disease. Because of a rare mutation, the body is unable to break down something called homogentisic acid in the blood. Over time, this binds to cartilage and bone. They become brittle and black. Heart valves calcify. The spine collapses. It can be very grim.
Although it was discovered in 1902 (the first known genetic condition!), it is only thanks to the AKU Society that we are holding clinical trials into a drug that can treat this disease effectively.
They are also organising an International Patient Workshop in 2018. This will allow patients from around the world to receive support and advice. I'm running to help them pay for it!
Donating through JustGiving is simple, fast and totally secure. Your details are safe - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. It's the most efficient way to donate - saving time and cutting costs for the charity.
Jamie