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.Read More »

On the eighth day of Christmas MND research gave to me: Eight members of the Research Development team

“On the eighth day of Christmas MND research gives to you… EIGHT members of the Research Development team”

We would like to wish all our blog readers Happy New Year! Looking forward, like many others, we have made our New Year’s resolutions of what we’d like to achieve in 2015:

L-R: Sadie, Belinda, Pauline, Lucy, Samantha, Natasha, Laura Front: Brian
L-R: Sadie, Belinda, Pauline, Lucy, Samantha, Natasha, Laura
Front: Brian

Brian Dickie (Director of Research Development): “I’m looking forward to developing closer relationships with other funding agencies, to look at research opportunities that we may not be able to do on our own. We expect researchers around the world to work together, so their ‘joined up thinking’ should be supported by our ‘joined up funding’.” Read More »

How do we fund research?

As we’ve mentioned in previous posts, our current research grants round is our biggest yet with 19 full applications being reviewed by our research advisory panel. But what does that look like? And what do we have to do to prepare these applications for our research advisory panel?

To answer these questions (and more), and give you a brief insight into the work that our research grants team do to ensure we fund the very best research, we’ve made a short film featuring Dr Sadie Vile, our research grants manager and Natasha Rowe, our research grants administrator as the voiceover.

To find out more about how we fund research please visit our website.

Please do also let us know what you think about our video by leaving a comment below!

One day to go: Poster session set up

As the symposium grows ever nearer, the daunting task of setting up the poster session was upon us.

As we entered the poster room this morning we were met with a blank canvas of 100 empty poster boards, each of which are capable of holding four posters. With a deep breath, we mentally prepared ourselves for the task ahead – to label each board with a poster number in a logical order and to separate each board in half. With seven rows of poster boards filling the space of half a football pitch, this certainly wasn’t an easy task. After a few hours of Belinda, Sadie, our helpful volunteer and myself had finished sorting out the order of the 295 posters that are going to be presented at this year’s symposium –which were met with a few ‘hiccups’ along the way – our mammoth task was finally complete!

This may seem like a small victory, but it’s vital to make sure that the 13 different themes to be discussed through posters are easy to find to create a smooth poster session with a lot of discussion and debate. Hopefully symposium delegates will agree!

With less than 24 hours to go until the International Symposium on ALS/MND begins, our excitement is growing as more and more delegates fill the halls.

The next three days will be jam-packed with news and views and I hope you will enjoy reading our blog to take you behind the scenes of the symposium.

‘Hello’ from the newest member of the team

As the newest recruit to the Research Development Team, I have been asked to let everyone know a bit more about me.  Previously I was a Medicinal Chemist working for GlaxoSmithKline (GSK) for almost 20 years.  In that time I “survived” two corporate mergers and worked at three different research sites.  For almost a third of my career I was involved with neuroscience projects, seeking new therapies for Alzheimer’s Disease or chronic pain.  My main role was to design and synthesise new molecules, which were then passed to biologists for testing, the results being used for the next round of design.

Earlier this year, GSK senior management decided to decrease its neuroscience research, resulting in many redundancies.  I have extensive voluntary experience of working with disabled people, and in organising other volunteers.  I decided to see if I could use my scientific knowledge in a job which would benefit sick or disabled people – and then I saw the advert for Research Grants Manager at the MND Association.  As I discovered more about the disease and the Association (thanks to all involved with the invaluable and comprehensive website), met enthusiastic people at my interview, and recognised that I had previously known people with MND though my volunteering, I realised this would be a great opportunity.

With little prior knowledge of Motor Neurone Disease, I have been on a steep learning curve over the past two weeks.  I have had meetings with representatives from many of the other teams, so I can understand how we all work together for the common aims of the Association.  I was lucky to attend the AGM and Annual Conference, where I met an even greater range of people, including volunteers and some of the Trustees.  The keynote speaker was Professor Nigel Leigh (Kings College, London), who gave an excellent overview of the current status of biomedical research into the causes of MND.   It is important that I have a good understanding of the relevant science before the Biomedical Research Advisory Panel Meeting in October, so I have been reading lots about recent and current research.  It has been quite hard work to understand the detailed biology, especially getting to grips with all the acronyms , but my colleagues have been answering my questions with patience.  I have also accompanied Brian to a meeting arranged to foster collaboration between two different groups of researchers.

My experience in “drug discovery” falls somewhere between the main areas of research currently funded by the MND Association – ie the biomedical studies into causes of the disease and the clinical investigations of potential therapies and of ways to improve quality of life for patients.   However, my industrial experience has given me a good understanding of how basic research is essential before new therapies can be developed.  Already we are funding one research project in collaboration with a biotech company and another where the academic scientists hope to identify chemicals that can correct a problem with faulty SOD1 proteins.  With “incurable optimism” we can look forward to more projects like these in the future.

Busy times in the research team!

The last few days have been quite a hectic for the research development team for many reasons.

Annual conference workshop
This year, our Annual Conference and AGM were held in Nottingham on 11 September. For this event, Kate and I had been set the challenge of organising a workshop on taking part in research. In our workshop, we explained how the contribution of people living with MND and healthy individuals is so important to moving MND research forward. We also gave an idea of the wide range of ways in which people can take part and how much difference there can be between one project and another in terms of the time a participant needs to commit, how much they need to travel, and of course what they actually have to do.

After showing a video clip of Colin Knight, who is living with MND talking about his reasons for taking part in research (we’re currently waiting for approval to put the video on here – so look out for it!), we then asked our audience to read out a few quotes that we’d received from MND researchers. Here’s one of them:

“Without the generous support of patients with MND who donate DNA and tissue to our research department, much of the work that I do would literally be impossible. I am constantly amazed that at a very difficult time in their lives, people have such commitment to provide time and energy to participate in clinical trials and studies, and this is very inspiring to those working in this field” Dr Alice Brockington, clinical researcher.

Taking part in research can be inspirational for both people living with MND and researchers alike. Seeing the determination of both groups to push research forwards really demonstrates that we’re all on the same path and are all looking to help in some way to find the answers to MND and hopefully, one day find a cure.

We’re optimistic that everybody went home with a clearer idea of how they might be able to participate in MND research!

Preparing for the Biomedical Research Advisory Panel (BRAP) meeting
We’ve also been busy preparing the paperwork ready for the next BRAP meeting, who will meet in exactly a month’s time to discuss five applications that have been submitted to us for funding through this grant round. If any of these are successful, we’ll let you know once the start details and costs etc have been approved by our Board of Trustees.

Welcome Dr Sadie Vile!
Last week, we also welcomed our newest addition to the research development team – Dr Sadie Vile, our research grants manager. As she becomes more settled into the role, we’ll ask her to introduce herself on the blog!

Dr Brian Dickie to be drawn by Patrick – the incurable optimist!
Last week we also heard that Brian had won the online vote on Patrick’s Facebook page to be painted next in his quest to paint 100 optimists. Needless to say, Brian was extremely delighted at this news and we all can’t wait to see the painting develop!