How MND research happens: Manchester Science Festival

On Tuesday, we posted news of the two MND Awareness engagement events taking place in Manchester during the Manchester Science Festival (on 25 and 31 October). Both activities have been developed to try and translate to a wide audience the cycle scientific investigation goes through. Here in a second guest blog for us Dr Emma Hodson-Tole explains more.

The search for providing effective treatments and provision of support for MND is a challenge a wide network of scientists from many different disciplines are working to solve.  This requires development of new technologies and new approaches to enable study of different aspects of the neuromuscular system. These help provide a new understanding of how the neuromuscular system works, and changes which occur due to diseases such as MND.

To do this funding is required to provide laboratory space, cover costs of equipment and materials and enable researchers to have time to focus on their chosen programme of work.  Funding can come from many sources, for example from government research agencies such as the Medical Research Council (MRC) or medical research charities. For the MND Association the money spent on research is raised by donations. The donations come from members of the general public and the amazing range of fundraising activities they take part in.

It takes dedication for MND research to happen

So what are the motivations for all these activities?  Both the research and the fundraising activities require large amounts of dedication, determination and drive.  The source of this motivation is likely very different for each person in this network.  From the people I have had a chance to meet as part of my work related to MND, it seems that there is often a common theme.  That theme is the stories of the people who have been touched by MND, either through being diagnosed themselves or through supporting a family member or friend with the disease.  It is these individual stories which bring us full circle, to the challenges which scientists must work towards solving.

Inspiring the next generation of scientists

We hope the engagement activities planned for the science festival will help raise awareness of MND and ongoing research based in Manchester and other parts of the UK, such as the Patani Lab.  Spreading awareness within this setting could, we hope, also help inspire the next generation of scientists who are motivated to try and meet the challenges MND currently faces us with.

If you are in the Manchester area please do come by and see us, equally don’t forget to encourage any family or friends in the region to come and find out what it is all about!

You can find out more about the events described here and those of the wider Manchester Science Festival at: http://www.manchestersciencefestival.com/ScienceExtravaganzaPoster

Movement Making: 10.30am – 5pm Sunday 25 October, The Museum of Science & Industry, Manchester, M3 4FP

Action Potential: 11:45am, 2pm and 3pm Saturday 31 October, The John Dalton Building, Manchester Metropolitan University, M1 5GD (Being held as part of MMU Science Extravaganza)

Dr. Emma Hodson-Tole is a member of the Cognitive Motor Function research group at Manchester Metropolitan University. The activities described have been developed in collaboration with Dr. Rickie Patani (UCL), Belinda Cupid (MND Association), Devin Louttit and Thomas Valentine (Manchester Metropolitan University), Combination Dance, Dance Consulting and have been supported by The Wellcome Trust, the MND Association and MMUEngage.

Those of you on Twitter can follow activities related to the Manchester Science Festival using #msf15 and those specific to our activities using #mndmove

Movement Making in Manchester

Manchester this half term will be the showcase for two MND awareness events we’ve been working on with Dr Emma Hodson-Tole and Dr Rickie Patani. We’ll be publishing a series of blogs about what’s happening and why through this week. In the first Dr Emma Hodson-Tole explains what the events are about.

It is coming up to that time of year again when science takes centre stage in Manchester. The ninth Manchester Science Festival has over 130 planned events, providing a unique blend of art, make-it workshops, performances and big experiences aimed at encouraging visitors of all ages to immerse themselves in science, ideas and innovation.

As part of this year’s festival we have developed two activities which we hope will raise awareness of motor neurone disease (MND), the MND Association and some of the research which is supported by the fundraising activities of the charity.  The first event is an opportunity to visit the first showing of a video montage, composed by Devin Louttit and Thomas Valentine (MMU), telling some of the stories of those affected by MND and some of the researchers working to development new treatments or methods.

Movement Making at MOSI

The event, Movement Making, will take place at The Museum of Science and Industry (MOSI) on Sunday 25 October and will also provide opportunities to talk directly with researchers from Manchester Metropolitan University (MMU) and The Patani Lab as well as see and interact with some of the technology they use as part of their research.  This will include the chance to see cells through a microscope, view your own muscles using ultrasound imaging and hear the electrical activity which occurs in muscle when they are activated.

Emma Hodson-Tole discussing her research with guests from the Motor Neurone Disease Association.
Emma Hodson-Tole (left) discussing her research and using the ultrasound imaging machine with guests from the MND Association.

Action Potential at MMU’s ‘Science Extravaganza’

The second event is the premier of an exciting new dance-science collaboration called ‘Action Potential’.  Dancers and martial arts performers will stage an interactive dance exploring how we currently understand a motor neurone works, how MND affects the body and the effects MND has on those living with the disease.  The dance is choreographed by Anne-Marie Smalldon and is the result of a new collaboration between researchers and professional dancers.  In between performances there will also be another opportunity to see the video montage ‘Movement Making’, talk to scientists about their work and volunteers from the MND Association about their experiences of MND.ACTION POTENTIAL_FINAL

This event will take place on Saturday 31 October at Manchester Metropolitan University and is part of a range of wider science based activities being staged as part of the University’s ‘Science Extravaganza’ day.

Movement Making: 10.30am – 5pm Sunday 25 October, The Museum of Science & Industry, Manchester, M3 4FP

Action Potential: 11:45am, 2pm and 3pm Saturday 31 October, The John Dalton Building, Manchester Metropolitan University, M1 5GD (Being held as part of MMU Science Extravaganza)ScienceExtravaganzaPoster

Dr. Emma Hodson-Tole is a member of the Cognitive Motor Function research group at Manchester Metropolitan University. The activities described have been developed in collaboration with Dr. Rickie Patani (UCL), Belinda Cupid (MND Association), Devin Louttit and Thomas Valentine (Manchester Metropolitan University), Combination Dance, Dance Consulting and have been supported by The Wellcome Trust, the MND Association and MMUEngage.

Those of you on Twitter can follow activities related to the Manchester Science Festival using #msf15 and those specific to our activities using #mndmove

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 »

New inherited MND-causing gene identified – TUBA4A

An international team of researchers, led by MND Association-funded researchers based at King’s College London, have identified mistakes in the TUBA4A gene as a new cause of the rare inherited form of MND.

This new MND-causing gene causes the cell’s structure, or skeleton, to break down – resulting in the cell being unable to transport molecules from one end of the cell to the other.

TUBA4A falls off the track

The TUBA4A gene is responsible for the Tubulin, alpha 4A protein and the researchers have found that the genetic mistake in the TUBA4A gene causes the microtubule network to breakdown in MND.

The microtubule network is a bit like a railway system. Normally, the healthy TUBA4A protein acts like a train, allowing the cell to transport molecules along this railway track to where they’re needed. As well as transporting molecules around the cell, the microtubule also acts as a skeleton within it (known as the ‘cytoskeleton’).Read More »

Have your say about research priorities

The relative of a close friend of mine is seriously ill with cancer. Supporting my friend and hearing of how their relative is, brings back memories of people close to me that have died. It brings back memories of what happened to them, how it affected me and my family. At the same time I find myself thinking – how would I react to approaching the end of life – would I want to know everything, perhaps I would want to concentrate on living and not think about dying too much?

Either as a relative or someone who has a condition, some of us would be on Google or talking to those around us, looking for answers and reassurance. For some of those questions there aren’t any answers available. Perhaps you can’t or couldn’t find the answers either?

Read More »

The UK MND DNA Bank opens its doors to researchers around the world

By 2011 the UK motor neurone disease (MND) DNA Bank had collected over 3,000 samples from people living with MND in the UK, their family members and healthy controls.

Several years since the first sample was taken, the MND Association can now proudly announce that the UK MND DNA Bank is ‘open for business’ to the worldwide MND research community.

The sun is leaving us, the nights are beginning to draw in and Christmas treats such as mince pies are beginning to fill the shops. MND researchers around the world, however, have been given an early Christmas present – the opening of the UK MND DNA Bank!

Freezer at BioBanking Solutions
Freezer at BioBanking Solutions

The story

At present, the cause of MND is thought to be a combination of subtle genetics, lifestyle and environmental factors. We know a small number of these genetic factors, but not all of them, thus the Association created the UK MND DNA Bank. Back in 2003, co-ordinated by the three MND care centres (King’s College London, Sheffield and Birmingham) a multicentre collaboration across the UK invited people living with MND to participate in a project, which hopes to answer the question: What causes MND?

Read More »

Abstract statistics

In the heat of August (for once I can actually write that, without my fingers crossed behind my back!), statistics relating to the production of the must-have document for the 24th International Symposium on ALS/MND in Milan in December might seem extremely ‘abstract’!

Abstracts are scientific summaries of the research that will be presented at the largest annual scientific conference on MND, organised by the MND Association. We have had a bumper year for people wishing to present their work, with over 500 summaries received. sympopromo

In the last month, my colleagues Lucy, Sam and Pauline have been busy preparing the text of these summaries, to send to the publisher. We pressed the ‘send’ button on the 15 August, much to the relief of all concerned.

They will be published online for all to access and download at the beginning of November. But if you’re curious to see what they look like, the presentations from last year are still available.

Here’s a countdown of some of the abstract statistics so far:

  • 750, 000 + words read in total by the research team at the MND Association between May and August
  • 189, 618 words were sent to the publishers for the abstract book, in the form of a 357 page document (Font: Times 10 pt in case you were wondering.. !)
  •  3, 515 different researchers have contributed to the abstracts, making an average of 7 authors per summary – showing the truly collaborative nature of MND research
  • 103 talks are scheduled in the programme, now available to view online on our website
  •  320 poster presentations in the abstract book, with over 70 additional posters to be presented on care practice and work in progress

We look forward to sharing with you our progress as we prepare for Milan. You can also follow the story on Twitter using the #alssymp hashtag.

A 'Word Cloud' created with Wordle.net
A ‘Word Cloud’ created with Wordle.net

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.

Belinda – incurable optimist

I am optimistic every time I prepare a talk when I look for something new to say about advances in research.

Since the discovery of the TDP43 mutation in 2008, I have become spoilt for choice! Every year I have been able to talk about new genetic discoveries to the local groups, branches and healthcare professionals that I present to. These discoveries are clear markers on the way to a world free of MND – giving insights into the inherited and sporadic forms of MND, what goes wrong in motor neurones themselves and identifying targets for the development of new treatments. The ‘scent’ of a new discovery attracts new researchers and scientists into the field too.

These are the reasons that I am incurably optimistic about research.

Follow our incurable optimism campaign

The importance of FUS

It is really quiet in the office today, with a few colleagues out and about for various reasons. As soon as the thought entered my head about having a productive day with no distractions, an email landed in my In Box. Had I seen the research report mentioned in this press release? A quick scan of the release and my thoughts were ‘no’ (I haven’t seen it), ‘how exciting’ and ‘well there goes my quiet afternoon’ in quick succession!

The bottom line of the research is that some MND researchers in Chicago, USA led by Dr Han-Xiang Deng and Professor Teepu Siddique have been able to make a connection between a biochemical pathway recently implicated in the rare, inherited form of MND (known as familial MND) and sporadic MND. They have found clumps of the ‘FUS’ protein in motor neurones of people with familial MND AND in motor neurones of people with sporadic MND too.

One of the keys to understanding what causes motor neurones to die in MND is to understand which proteins are deposited in affected motor neurones. Deposits, or clumps, of proteins are common to many neurodegenerative diseases, the main difference between the diseases is which proteins are found. A protein called TDP-43 was the first protein discovered to be consistently deposited in the motor neurones of people who had MND. The results from this Chicago research group showing that FUS protein accumulates in most cases of people with MND is the second discovery of its kind.

The efforts of many people around the world will now be focussed on confirming these exciting results which take us closer to understanding the causes of MND.

All of these studies have been conducted using the post-mortem brain and spinal cord tissue of those that have donate these tissues for research after their deaths. A big thank you to anyone who has helped this happen for close family and friends. More information on this generous opportunity to help MND research can be found on our website.