Action for A-T was awarded a small grant in June after being nominated by Peter Scrivener.
Action for A-T was established in 2012 by parents whose daughter was diagnosed with the rare neurological condition named Ataxia Telangiectasia (A-T), where swallowing and muscle coordination fails due to brain disease and the immune system does not work. Survival has not improved since the 1950s and approximately half of patients die before their 20th birthday, mainly from respiratory failure.
The charity’s mission is simple, they aim to speed up the process of identifying a cure for A-T or treatments that delay or prevent the disabling effects of this devastating childhood condition. They do this by seeking and funding high quality peer-reviewed medical research both in the UK and around the world.
The donation will support work being undertaken at Nottingham University Hospital, which aims to measure the lung heath in A-T patients. This involves a relatively simple process for able-bodied patients but due to various respiratory issues associated with the condition, monitoring lung health in A-T patients is a lot more complicated.