900 delegates attend opening session

There are now over 900 delegates who have registered and are now attending the symposium which is outstanding!

The opening session is the top billing session because every delegate attends – from this moment on; the sessions are split in two between scientific and clinical. So, as you can imagine, the auditorium was quite busy this morning.

As the opening session began, there was a roar of Velcro ripping apart as people opened their delegate bags. The sound resonated around the auditorium in an almighty fashion – maybe next year we will consider using buttons on the delegate pack instead of Velcro!

As I foretold, there were also a number of poster presenters putting up their posters at the same time as the opening session. However, not all of the posters have yet been displayed so hopefully as the day goes on all posters will be up.

Our attention was soon grasped by Mrs Köhler, patron of the German Alliance for Chronic Rare Diseases and wife of the German President and First Lady of Germany (pictured on the bottom right of the picture to your right), as she warmly welcomed us for attending in the hectic few weeks before Christmas. Just incase you don't know what our director of research development Dr Brian Dickie looks like, he is also in the picture on the bottom left. Brian works incredibly hard to organise the symposium every year and it was his responsibility to represent the MND Association when Mrs Köhler was welcomed to the event.

After the formal introduction, Baroness Finlay, a patron to the MND Association (pictured on the top row in the middle), took to the stage. Chris, Kevin and I all agreed that Baroness Finlay gave an extremely inspiring talk on palliative care. She stressed that good communication and good listening is essential if health and social care professionals are to help patients who are feeling helpless and hopeless. She also urged us to consider children who will be affected by the diagnosis and progression of MND in their family. In her experience, she has found that children want their family to be happy, so they do not want to ask questions that may make adults feel uncomfortable. Ultimately, these questions need to be answered however difficult this may seem. Families need to understand that a child’s grief is different to that of an adults and although a child may ask insensitive questions, this does not mean that they are not grieving, just that they are trying to understand how their world will carry on from a practical point of view, such as who will take them to school now that they have lost a parent or loved one.

Prof Robberecht, an eminent researcher who next took to the stage, used a SWOT analysis (Strengths, Weaknesses, Opportunities and Threats) in relation to where we are today with MND research in our search for an effective treatment. What stands out in my mind about his talk was that he told us not to underestimate the achievement of Riluzole as a treatment for MND, as it is a remarkable achievement that is often overlooked in our search for new and better treatments. He also said (through showing us results from a study) that the use of a multidisciplinary team can increase the survival of somebody with MND by 46% which really bought it home how beneficial these teams are for people living with MND. Prof Robberecht also explained that in our search for an effective treatment we should avoid identifying genes that can cause, or modify the progression, or onset of MND without studying them as this is both a waste of money and time. He also stressed that we should not omit rigorous science with excuses of the pressure to find a cure. He finished his talk with an outlook that research in the future needs to be multi-disciplinary, collaborative and focused and said that “The future has never been so hopeful”.

As an added note to the anonymous comment left on the blog entry below – Belinda and I gladly didn’t get RSI from setting up the poster session but we were both very tired afterwards!