Joining forces to research rare disease
We are incredibly proud to have joined forces with Action for A-T and The A-T Society to establish a new fund dedicated to Ataxia-telangiectasia (A-T) research.
A-T is a progressive neurodegenerative disease that affects around 20 children in the UK each year. The condition is life-limiting and most children with the condition will need to be in a wheelchair by the age of 10.
This is the first UK joint fund dedicated to A-T research and it is intended that grants will be awarded by the end of the year. The first call for applications for grants up to £90,000, that may lead to treatments and cures, was launched in Cambridge at the A-T Clinical Research Conference 2012. Collaborative applications between the UK institutions and other international centres of excellence are particularly encouraged.
John Shanley, chief executive of Sparks, said, “The funding into research of this rare and life-limiting disease has huge potential for improving the treatment of A-T and the lives of the children living with this rare condition. As a charity we give careful consideration to the research we fund, so are delighted that we can give our support to this research into a condition that has a devastating impact on children and their families.”
William Davis, chief executive of The A-T Society, added, “Together we can make a much bigger impact than we could working on our own. Collaboration is the only way to make progress with a rare and complex condition such as A-T and our three organisations are showing the way with this first UK joint fund dedicated to this research.”
This funding collaboration has been welcomed by Toby Read, the current chairman of Action for A-T. Toby’s daughter, Evie, was diagnosed with the condition at five years old. The condition will eventually attack the part of her brain controlling movement and stop her from walking, speaking and even eating. Toby comments, “We are not without hope that a cure can be found in time for Evie as medical experts have indicated that these are promising times for children like her. However, because the disease is so rare, funding is largely dependent on important collaborations such as this and we are proud to be able to support research into the condition.”