Guest blog by Sally Light, Chief Executive of the Motor Neurone Disease (MND) Association
This is a big week for the Motor Neurone Disease (MND) Association and for more than 900 delegates from as far away as Japan, Australia and the USA. We are all heading to Milan for the 24thInternational Symposium on ALS/MND.
Motor neurone disease (MND) is also known as amyotrophic lateral sclerosis (ALS),or Lou Gehrig’s disease, after the American baseball star of the 1930s who died from the disease and who raised the profile to the wider public of MND.
Wherever you are in the world and whatever you call it, MND is a devastating disease with no current diagnostic test and no cure.
I joined the MND Association as chief executive almost a year ago so this will be the first time I have attended our annual symposium. The organisation of the three day event is impressive in itself and I am very proud of the small team who plan the event with military precision from our head office base in Northampton. I am equally impressed by the delegate list. It is the Who’s Who of MND research and we attract the very best including the next generation of up and coming researchers and clinicians from right across the globe, all united by a common aim; to better understand the complexities of the disease and to provide better clinical care to people living with MND.
Scientific and clinical sessions run in tandem across three long days and doubtless a lot of strong Italian coffee will be fuelling further discussions and informal collaborations long after the formal sessions finish too. Research might often by necessity be lab-based but the value of face to face time with peers across the globe cannot be underestimated and is one of the key benefits of attending.
I am excited and slightly apprehensive too. I will be stretching my BSc from what seems like several lifetimes away when I qualified as a nurse, to the extreme. The science might be complicated but it is amazing too and the variety of topics covered at the symposium is impressive; from Respiratory and Nutritional Management to Genetics and Genomics, to Clinical Trials and sessions looking at Quality of Life.
The MND Association has a three-fold mission. We strive to improve care and support for people with MND and all who care for them in England, Wales and Northern Ireland. We also campaign hard and raise awareness so their needs are recognised and met. And we fund and promote research that leads to a new understandings and treatments, and ultimately brings us closer to our vision of a world free from MND. Our current research portfolio exceeds £7million. Many of the researchers whose work we support will be presenting sessions or posters at the symposium and I am looking forward to meeting those I haven’t already met.
In the past year I have also met many of our amazing volunteers who work tirelessly to promote awareness of MND and support people living with MND from our 90 branches and groups and they have all told me how much research means to them. We will be sharing the activities and discussions from Milan with them as we take one step closer to defeating this terrible disease.