Sally Light – my MND research blog

To end MND Awareness month our final blog for our MND Research ‘blog a day’ is from Sally Light, CEO of the MND Association. After joining the Association back in December 2012 she blogs about her experience of MND research.

I have the fortune to meet lots of our members and supporters as part of my role and I am very frequently asked about progress with MND research – are there any new developments, are we any closer to understanding the disease or to new treatments?Read More »

MND meerkats raising awareness around the globe

Using social media to establish their presence, the MND meerkats have been raising awareness of MND research. From the labs of Sheffield to the shores of Perth, they’ve covered huge distances in their awareness raising mission. Here Gino, Mo and Oz write about their recent activities:

Gino D’Amino

gino1Gino D’Amino was named by staff at the MND Association prior to the 24th International Symposium on ALS/MND, which was being held in Milan, Italy. He was also lucky enough to get his outfit designed too!

In Milan, Gino was a huge success. After catching up with Mo LeCule during a coffee break he then went on to help sell 100 meerkats – raising 500 Euros for the Association!

After the symposium, Gino visited a number of our funded-researchers during the European Network for a Cure of ALS (ENCALS) meeting in May 2014. As well as being present at these international research events he has also helped members of our Biomedical Research Advisory Panel (BRAP) decide on which new research projects the Association should fund.Read More »

Co-ordinating the International Alliance of ALS/MND Associations

Rachel Patterson is the Co-ordinator for the International Alliance of ALS/MND Associations. Tomorrow is Global Awareness day and they are promoting ‘One Global Team… One goal for a world free from ALS/MND’. Here she writes about the role of the Alliance in creating a world free from MND.

My name is Rachel Patterson, and I am the Coordinator of the International Alliance of ALS/MND Associations.

As the only employee of our small not-for-profit organisation, I do a bit of everything, from administration to PR to marketing to communications to accounting. I am deeply committed to my position in part because I have personal experience with this disease; my mother is a neurologist who has dedicated her career to the care of people with MND, so I grew up understanding its devastating impact on individuals, families and communities.Read More »

Another piece in the MND Jigsaw..

TDP-43Research 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.

By identifying this target within the cell, the search is now on to find drugs to restore the strength of this link. Read more about this news story on our website.

Only four days in and it seems that MND Awareness month is going to be anything but quiet.

A research perspective on the MND Association spring conferences

Following on from Peter Bickley, Dr Ruxandra Mutihac volunteered to present her research at the Newport Spring Conference earlier this year. Here she gives an insight in to her work at Oxford and her experience of the day.

OLYMPUS DIGITAL CAMERAThis April, I had the privilege of giving the research talk of the day at the MND spring conference in Newport, Wales. I was delighted to be given the opportunity to share with people living with MND and their carers the research I am doing at Oxford University on stem cell derived motor neurones. During the day I was completely taken aback by everyone’s interest and enthusiasm on the subject.Read More »

Peter Bickley – my MND research blog

This week is Volunteering week and we’re celebrating volunteering on our MND Research blog for our ‘blog a day’. Peter Bickley is an MND Association trustee and member of our Biomedical Research Advisory Panel (BRAP). Here he blogs about his role as a voluntary Trustee and what it’s like to be part of BRAP.

Until 2001 I had never heard of MND. Then, after the usual delay and uncertainty, my father was diagnosed with this unfamiliar disease; he died in 2002. The MND Association did not feature prominently during his illness, not through want of trying but because he simply did not want to know; this is not unusual, it is understandable but having seen it in action I am sure it is mistaken. So the efforts of the MND Association at the time were appreciated by those of us around him and the Association came onto my radar as a charity to support which, in a modest way, I did.Read More »

Mathematics and MND

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 »

X-rays for MND research

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).

Gareth Wright- soleil
The synchrotron in Soleil, France

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Cell Culture Work in Motor Neuron Disease Research

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.


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.

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