We were lucky enough to be joined at the 6th EKF by Nick Sireau of the AKU society. Nick has two sons with the condition and came to share with us his experiences, as a parent, as a fundraiser, and as a supporter of a clinical trial. The society raised money to help patients and parents taking part in the trial through crowd funding on Indiegogo, and other innovative approaches, including coffee mornings, and cake sales, raising over $120,000.
Alkaptonuria (AKU) is a rare genetic disease. It causes a build-up of toxic acid in the body that eats away at the patient’s bones, turning them black and brittle. The nature of the disease leads to disability and long-term pain. AKU normally only affects one in every 250,000 people worldwide. The AKU Society exists to work to improve the lives of patients, whilst researching for a cure. Support them to raise vital funds for patient support, community-building events and essential medical research to find a cure for this debilitating disease.
Donations can be made directly at: https://akusociety.org/get-involved/donate/