On 20th May at the invitation of Dr Penny Foulds we attended Lancaster University for the purpose of seeing the laboratories and learning about the research carried out there on MND. We were given a warm welcome by Prof. Alsop the Team Leader, and his research team.
Refreshments, including home-made cake were provided on arrival which was most welcome. This was followed by an introduction and welcome by Dr Penny Foulds who introduced her two Research PhD students Sam and Kirsty. They gave an invaluable insight into their research by way of a graphic presentation of the presence of the TDP-43 protein which is present in the brain and spinal fluids of MND patients. They told us the facts with such enthusiasm and animation we were convinced that our future scientists with their capabilities will carry forward our aims for a cure for MND. This was followed by a very thought-provoking presentation by Steven Chew-Graham from the Manchester Brain Bank. He inspired us to think about healthy brain donors as well as people with MND. One important point was put across to us that a decision to donate after death would only be carried out after an earlier consent with specific data and monitoring having been done during the lifetime of a potential donor. It is too late to decide to donate at the point of death. A specific consent has to be given for an after death donation such as the brain for research. A point not realised by the majority was that the usual donor card will only cover organs for living transplants. I think this explanation was acceptable to us all as many believed that to carry a donor card was sufficient. This is not so. All this was followed by a lively question and answer time. The whole experience was unique to us all and we left with thought-provoking facts whirring around in our brains. Our grateful thanks are due to Dr Penny Foulds for inviting us to share a small part of their world.
Sandra Harding May 2011
Our thanks to Sandra for organising this wonderful day .