Prize winning posters in Dublin

As well as all the networking, debate and new information being shared, the International Symposium on ALS/MND is also a time to celebrate achievements by the giving of awards. The Biomedical and Clinical poster prizes are an opportunity to recognise and celebrate the excellent research and clinical practice being conducted by those early in their career.

Now in its fourth year we hope that the poster prizes will help give the winners career a boost, and give them the encouragement and motivation to continue in MND/ALS research.poster-prize-winners-low-res This year the Panel selected an international group of winners: Dr Albert Lee from Australia and Elsa Tremblay from Canada were jointly awarded the Biomedical poster prize and Ruben van Eijk from The Netherlands won the Clinical poster prize. Each winner received a certificate and a glass engraved paperweight.

The prize winning research ranged from understanding the consequences of a newly discovered gene mutation linked to MND, to why the junction between nerves and muscles is one of the earliest signs of motor neurone damage, to a new statistical analysis to make clinical trials quicker and more efficient. Below I’ve explained more about the research that the winners presented. Continue reading

New genetic discoveries tell us more about what causes MND – Part 2

Two sets of MND genetic results were published yesterday. One of these results was about the importance of a new gene called NEK1. The second highlighted the role of gene C21orf2 in MND – we wrote an article about this yesterday. Both sets of results were published in the prestigious journal Nature Genetics.

What are the results and what do they tell us?

Researchers found that variations in the NEK1 gene contribute to why people develop the rare, inherited form of MND. Variations in the NEK1 gene were also found to be one of the many factors that tip the balance towards why people with no family history develop MND.

NEK1 has many jobs within motor neurones including helping keeping their shape and keeping the transport system open. Future research will tell us how we can use this new finding to target drugs to stop MND. Continue reading

New genetic discoveries tell us more about what causes MND – Part 1

Today some exciting news about the genetics of MND was published in the scientific journal Nature Genetics. The results come in two research papers published in the same issue of the journal.

This blog post discusses the results of the first of these papers for which King’s College London based Professor Ammar Al-Chalabi was one of the leading researchers. A post on the second paper will follow later.

Here we’ve given an overview of what the researchers have found, what it means for people with MND and how the analysis was conducted. You can read a more detailed explanation of the research results from the King’s press release. Continue reading

Working together towards a world free from MND

During MND Awareness Month we are highlighting some of the research the MND Association funds in our ‘Project a Day’ series. Today, on global ALS/MND awareness day, we wanted to give you a look at the research into motor neurone disease taking place elsewhere.

Thousands of researchers across the globe are working towards a world free from MND. Rather than tell you each of their stories, we have gone to those that fund and facilitate this research, and asked them how their efforts bring us closer to figuring out the causes of MND, and finding treatments for this disease.

“I find huge inspiration in the knowledge that when I finish my work for the day, the MND researchers in Australia are just beginning theirs.” Prof Martin Turner, University of Oxford Continue reading

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

Raising the profile of Kennedy’s disease

Did you know the MND Association also supports people who have Kennedy’s disease?

In May a new clinic specialising in Kennedy’s disease opened in London at the National Hospital for Neurology and Neurosurgery.

To mark this big step in helping support and treat people with Kennedy’s disease, Katy Styles who campaigns on behalf of the Association, and whose husband Mark has Kennedy’s disease, thought it would be a great opportunity to raise awareness of this rare condition.

Katy and Mark Styles
Katy and Mark Styles

There is very low awareness of this disease amongst neurologists, healthcare professionals, the general public and within the Association itself. We do all we can to explain to everybody what Kennedy’s disease is and what it’s like to live with.

Due to the rarity of Kennedy’s disease you can feel very much alone. It is so great to be part of the MND family and the Association is key to this by making us feel part of a wider community.”

What is Kennedy’s disease?

Kennedy’s disease is a condition similar to motor neurone disease (MND) which affects motor neurones. It is sometimes called spinal and bulbar muscular atrophy (SBMA). Continue reading

Formaldehyde exposure and increased risk of developing MND

A new study published yesterday in the Journal of Neurology, Neurosurgery and Psychiatry (JNNP) highlights the link between increased exposure to formaldehyde and an increased risk of developing MND.

The study in the USA was conducted by Andrea Roberts and colleagues at the Department of Social and Behavioural Sciences at Harvard. They investigated whether a person’s exposure to formaldehyde in their occupation increased their risk of developing motor neurone disease (MND).20141020_MND Kings College_290

Formaldehyde is a colourless chemical that is used as a preservative in mortuaries, medical laboratories and by undertakers. Exposure occurs primarily by inhaling formaldehyde gas or vapour from the air or by absorbing liquids containing formaldehyde through the skin.

The study found that those with a ‘high intensity’ and probability of exposure to formaldehyde had nearly four times higher risk of developing MND compared to people who had no exposure to formaldehyde. All participants that fitted these criteria were funeral directors. The increased risk of developing MND in this occupation group was only found in men, with no link found for women.

Continue reading

Understanding more about GM604

20141020_MND Kings College_290The MND Association’s Director of Research, Brian Dickie explains more about ‘GM6’, also known as ‘GM604’, a drug in development by an American pharmaceutical company Genervon.

The Association funds a wide range of research that leads to new understanding and treatments, which may one day, bring us closer to a cure for MND. We are hopeful that the increasing international research effort into the disease will accelerate the development of an effective treatment for MND. However for non scientists I also fully appreciate how the ‘system’ often seems designed to impede rather than assist this process.

There has been much discussion online about the results of a small scale study of a drug called GM604, or GM6, produced by the American pharmaceutical company Genervon. You can read some general comments about the drug on our website. I’ve written this blog to explain in a little more detail why the research community is cautious about the results. Continue reading

Marking Rare Disease Day – how working together can help

Today is world Rare Disease Day, so it’s an appropriate time to raise awareness of ALL rare diseases, including motor neurone disease.

28 February is world Rare Disease DayThere are between 6,000 and 8,000 rare diseases, but what makes a ‘rare disease’? A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population (or where less than 5 people in every 10,000 are currently living with a condition).

MND easily fits this category – with a prevalence of between 5-7 people living with MND for every 100,000 people in the population – its ten times rarer than this definition. Continue reading