Collaborating to find treatment for MND

21 June – MND Awareness Day

Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs. 

It is at the heart of the Association to fight MND by funding and promoting research into understanding the disease so that we can defeat it. However, we would not be able to fight this battle on our own and the support of various people is crucial to defeat this MND monster.

Everyone working in the field of MND research has one aim – to find what causes this disease and find a treatment to cure it. We have already written about the long elaborate process behind developing and licensing new drugs but we have not yet talked about the people who are essential for this process to run successfully. Continue reading

Collaborating across Europe to find a cure: ENCALS 2016

332 delegates, 135 posters, 41 talks, one goal: to cure ALS

The European Network for the Cure of Amyotrophic Lateral Sclerosis (ENCALS) was set up to find a cure for ALS/MND by working collaboratively across 35 research centres (universities and hospitals) throughout Europe.

The 14th meeting of ENCALS took place in Milan between 19-21 May and was attended by scientists and doctors from across Europe. Researchers from the USA and Canada were also invited to present at this meeting.

Presentations on day one of this year’s meeting looked at some of the techniques to help identify genetic changes (mutations) linked to MND, such as whole genome sequencing. This is a rapidly growing area of research, thanks to Project MinE  – a global effort to find MND causing genes.

Clinical research was the focus on day two, and discussed the latest imaging and biomarker research. This is an important area as it will offer new ways to help track the progression of MND, and help to speed up diagnosis of this disease. Continue reading

New ALS gene represents another small step

It wouldn’t be the Symposium without a new gene discovery.

Although technology has allowed incredible advances in the gene-hunting field, this is countered by the fact that as more and more familial amyotrophic lateral sclerosis (FALS) genes are found, it makes the search for the remaining unknown genes harder  This is in part due to the fact that the undiscovered genes are likely to be increasingly rare (so even more rigorous detective work is needed) but the challenge is compounded by the fact that there are fewer and fewer samples with an unknown cause available each time a new gene is found.

The solution to these problems lies with greater collaboration, sharing knowledge, expertise and of course the vital samples needed for the research to happen.Dr Brad Smith

Dr Brad Smith (King’s College London) unveiled the latest collaborative effort, involving over 50 researchers across 9 countries. The researchers took an approach called Exome Sequencing, which analyses the 1% of the genetic code where most mutations are likely to be found, to look for genes in several hundred FALS cases where the genetic cause was still unknown. They then compared their findings with those from 60,000 individuals in publicly available databases. Continue reading