Networking to progress in the world of science: Mini-Symposium on MND

Conferences and symposia are a crucial part of the research world – not only for the amount of knowledge that is communicated to large audiences but also for the exchange of ideas on a more inter-personal level. Novel ideas are created there as well establishment of collaborations that might lead to new research projects and clinical trials – all in all, putting a bunch of researchers in a venue with a projector, coffee and biscuits can only lead to good things!

One of the recent events that I had the pleasure to attend was a small-scale conference – the Mini-Symposium on generic disease mechanisms in MND and other neurodegenerative disorders. Held at the Brighton and Sussex Medical School in late June, this event was a precursor to the inauguration of a new MND Care and Research Centre for Sussex, directed by Prof Nigel Leigh.

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(left to right) Prof Martin Turner, Dr Brian Dickie, Prof Dame Pam Shaw, Prof Nigel Leigh and Karen Pearce.

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Research on the best practical support for people with cognitive change

We know that some people with MND will be affected by cognitive change and a small proportion of these will develop frontotemporal dementia (FTD). The symptoms of cognitive change include changes in planning and decision making.

To help support people with MND who have these symptoms, and their families and carers, we need to firstly identify or confirm these signs are present and then to find ways to help manage them.

The Edinburgh Cognitive and Behavioural ALS Screen (known as ECAS) has been widely adopted as a good method of detecting symptoms of cognitive change. ECAS is a series of tests that are quick to do in the clinic and are specific to MND. Continue reading

Palliative Care Research – new funding available

Today an exciting announcement was made about three organisations working together to increase our knowledge on the best way to provide palliative and end of life care. The MND Association and the Chief Scientists Office in Scotland (CSO) will be working with Marie Curie on a new research call.

Marie Curie Logo

In addition to a £1million funding pot from Marie Curie, the CSO will contribute £225,000 of funding and MND Association will contribute up to £200,000. Scientists, clinicians or healthcare workers are invited to submit their outline applications by 14 January 2016.

Acting on what you told us

The areas that we’d like to fund are based on a project that was completed in January 2015, known as the ‘Palliative and End of Life Care Priority Setting Partnership’, shortened to ‘PeolcPSP’. At the core of this 18 month project were responses to an online survey, where many people shared their questions or experiences about the end of life. We were pleased that many people affected by MND took part.

From those survey responses, we worked out that there were a massive 83 topics that would be suitable for a research study (and where no conclusive studies had already been conducted). All of these are important topics to investigate, so we’re hoping that researchers with an interest in working in any of these topics will think about submitting an application for funding.Palliative-care-2

So what kind of topics are included?

The topics for the call are the list of 83 questions from this earlier palliative care research study (the PeolcPSP study mentioned above). It is too long a list to include in this post, but the overarching themes include how (best to):

  • communicate topics on palliative and end of life care
  • manage symptoms and medications
  • provide support for carers and families
  • provide support in bereavement
  • provide support for staff (and staff training)
  • co-ordinate care services
  • provide access to services
  • decide where the care should be and what type of care

Where can I find out more?

A press release and more information on how to apply for this funding is available on the Marie Curie website.

The Palliative and end of life care Priority Setting Partnership final report is available online. There’s also a video about the project explaining how it happened and why it is important.

Are there differences between FTD alone and FTD-MND?

The last of our FTD awareness week blog posts is focussing on a healthcare project looking into FTD (frontotemporal dementia) and FTD-MND (FTD when combined with MND). The project began last year and is being part-funded by us.

Jennie Adams

Jennie Adams

Professor Julie Snowden and PhD student Jennie Adams at the Cerebral Function Unit in Salford (University of Manchester) are looking into the behavioural and cognitive aspects of FTD and FTD-MND.

They are aiming to work out if there are any differences in thinking or behaviour between people who have MND-FTD and those who have FTD on its own.

For example this could be looking to see if people with FTD-MND tend to show more difficulties with language, but not have many changes relating to behaviour. Or if people with ‘pure’ FTD show more difficulties with appropriate behaviour in public, compared to organisation and planning skills. Continue reading

Hunting for clues about the genetic causes of FTD and MND

Yesterday we published an introductory blog on frontotemporal dementia (FTD) and described how it is sometimes found in combination with MND.

Today we are looking at a biomedical project on FTD and MND that we are funding.

The project

Dr Olaf Ansorge and Professor Kevin Talbot of Oxford University are leading a biomedical project aimed at identifying cell changes in the brain tissues of people who had MND, FTD, or developed both conditions (FTD-MND).

The aim of their research project is to identify which nerve cells within the brain are most likely to be affected by faulty proteins known to contribute to both FTD and MND. Knowing which brain cells are affected, and by which proteins, will help explain the genetic differences between the two conditions. Continue reading

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. Continue reading