The Symp Awards 2019: Highlights from Perth

On top of all the sharing of research and networking, the International Symposium is a time to celebrate the huge achievements of individuals/teams that contribute to the ALS/MND community. There are too many outstanding and dedicated individuals to mention but some are recognised through several awards. Here we present the awards and the winners of the 30th International Symposium – warmest congratulations to all for their successes.Read More »

Edaravone – a month on since the FDA announcement

It’s been over a month since the announcement by the FDA of their decision to licence edaravone / Radicava for people with MND in the USA. The speed of the FDA’s decision took the drug company MT Pharma and the MND research community by suprise. It is encouraging that edaravone has been licenced to treat MND after two decades of failed drug trials. Since the FDA announcement the effects of the drug and what it means for people with MND has been extensively discussed and some of the trial data has been published.

This blog is an update on what studies have been done on edaravone and the likelihood of people with MND noticing a beneficial effect if they were to receive it.Read More »

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.Read More »

New research projects agreed to help improve palliative and end of life care

Today we announced the results of an exciting new funding partnership with Marie Curie. Together we will be co-funding three research grants that help to answer some questions that people with MND identified as a priority for end of life care research. This is the first time that the MND Association and Marie Curie have worked together with a joint funding call. Each organisation has committed an equal amount of money to the funding of these projects, a total cost of £450,000 over the duration of the projects.

Read More »

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:

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

Cognitive Change and MND

In addition to the muscle weakness and wasting, MND also presents with non-motor symptoms, one of the most common being cognitive change.

Research has already shown that changes can occur to the nerve cells in the frontal and temporal lobe areas of the brain. These are the two areas which are responsible for controlling thinking, reasoning and behaviour.

Frontotemporal dementia, or FTD for short, is a rare form of dementia (cognitive impairment). One sub-type of FTD is sometimes found in people who have MND.

The first ever World FTD Awareness week is being held between 4-11 October.

To help raise awareness we are posting a series of blogs this week looking at FTD and research we are funding into this condition.

What is FTD?brain

The main symptoms of FTD are linked to behavioural and mood changes, such as loss of inhibitions, being unable to empathise with others, or showing repetitive behaviours.

Many people with FTD also have changes to their speech and vocabulary, such as using the wrong word for something – for example calling a sheep a dog, or becoming less articulate in their speech. Some people can also gradually lose their ability to speak.

Thinking can also be affected, with FTD affecting someone’s ability to plan properly and their organisational skills.

FTD is brought about by nerve cells within the frontal and temporal lobes of the brain dying, because the pathways connecting the nerve cells to each other become altered. The chemical messengers that pass on information from one nerve to another can sometimes also be lost.

More information on FTD can be found on the NHS website, FTD Talk website or on the FTD support forum.

There are also two information sheets that the Association produce covering changes to thinking: ‘Will the way I think be affected?‘ and ‘How do I support someone if the way they think is affected?‘.

Healthcare professionals can also access our resources on cognitive change, FTD and MND on the ‘For professionals’ area on our website.Read More »

Withdrawing ventilation support at the request of the patient: the ethical, moral and legal issues

Motor neurone disease (MND) can cause weakness in the chest muscles involved in breathing. This leads to shortness of breath and symptoms including disturbed sleep and headaches. Ventilation support allows a person to breathe more efficiently and can also extend survival.

The MND Association has funded research into respiratory management and ventilation support for people living with MND.

A study looking at withdrawing ventilation support at the request of a patient with MND has recently been published in the journal BMJ Supportive and Palliative Care. It was led by Professor Christina Faull, from LOROS – the Leicestershire and Rutland Hospice – in conjunction with the University Hospital of Leicester, and has been part-funded by the Association.Read More »

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.

Read More »

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. Read More »