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.
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.
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
At present there is no diagnostic test for MND, and diagnosis is usually determined through clinical observations and by excluding other diseases. Because of this, a definitive diagnosis of MND can take up to several months.
By developing an effective diagnostic test for MND, we will be able to diagnose MND earlier and put in place effective care and support needs sooner. Another benefit to earlier diagnosis would mean that people living with MND can be started on riluzole much earlier.Read More »
Queen’s Square in London, a green and calm space tucked behind the busy Russell Square, is known for the famous National Hospital for Neurology and Neurosurgery. One of the MND Association’s Care Centres is based at the National – providing important multidisciplinary team care for people with MND. However, in a concrete tower block, tucked in the corner of the Square is the Institute of Neurology, University College London (UCL). It’s a real gem of MND research activity, or in recent times you might say a beautiful crystal of ice! Read More »
Research published yesterday on 3 June 2014 in the prestigious journal Nature Communications, highlights key insights into how the protein TDP-43 may cause motor neurones to die in MND.Association-funded researcher Prof Chris Miller based at the Institute of Psychiatry at King’s College London, was involved in the research.
In the majority of cases of MND the protein TDP-43 is found to form pathological clumps within the motor neurones. The build up of this protein is thought to cause the motor neurones to die in MND, however researchers are yet to identify how this happens.
Association-funded researcher Prof Chris Miller has identified that the protein TDP-43 causes the connection between two cellular compartments within the cell to loosen. The breakdown of this connection means that the mitochondria (the cell’s battery) and the endoplasmic reticulum (where proteins are made and recycled) can no longer communicate and work together.
Following on from physics and X-rays; Matt Gabel is an MND Association PhD student at the Brighton and Sussex Medical School who is using mathematics to study MND. Here Matt blogs about his day and what it’s like being a PhD student.
I’ve just finished my weekly meeting with my supervisors, and I’m walking back over to my lab with a long list of things that I need to do: reading MND papers, filling in PhD paperwork, and emailing colleagues in London about whether they’ve made a fancy new adaptation to the model I’m working on.
My name is Matt, and I’m a first year PhD student using mathematics to study MND.Read More »
Dr Gareth Wright, based at the University of Liverpool, is a postdoctoral researcher funded by the MND Association. His research is all about using physics and x-rays to further our understanding of MND. Here he gives us a taste of why X-rays are important.
The background to X-rays
We have a long history of X-ray science in Liverpool. In 1896 Sir Oliver Lodge used X-rays to image a lead pellet embedded in the hand of a 12 year old boy. This was one of the first medical uses of X-rays and allowed the bullet to be successfully removed. Charles Barkla made an observation in 1904 considered to be the birth of X-ray science; X-rays behave like visible light and are part of the electromagnetic spectrum. They have wavelength around 0.1 nm (0.000000001 metres!) which makes them perfect to resolve individual atoms in a molecule (eg water).
Following on from baking, and understanding the roles of genes and proteins, Helena Chaytow (Royal Holloway) explains about her research. Helena is an MND Association-funded PhD student developing small strands of DNA, known as ‘antisense oligonucleotides’ to make motor neurones more resistant to damage.
DNA and RNA
The challenge of working with Motor Neuron Disease (MND) is that we don’t completely understand its causes. There are multiple theories for different events within cells that finally end up with the motor neuron-specific cell death found in MND. One of these theories relates to processing of RNA molecules, which are the cell’s method of communicating information from DNA with the rest of the cell. Find out more about DNA and RNA here.