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Professor Chris ShawProfessor Chris Shaw

Director of The Maurice Wohl Clinical Neuroscience Institute

Understanding Motor Neurone Disease

Motor Neurone Disease (MND) affects 5,000 people in the UK and nearly 300,000 globally – stealing their independence and ending their lives in the most terrible way.

Muscle weakness usually begins in one limb but spreads relentlessly until those affected are unable to walk, eat, talk and eventually, breathe.

Thankfully, progress in understanding MND has been incredibly fast in the last few years, with the help of work happening right here at King’s. Since 2008, Professor Chris Shaw and his pioneering team have discovered four new MND causing genes.

These discoveries have enabled laboratories across the world to identify people who carry the genes, and even prevent future generations from inheriting them.

Linda’s story

‘My mum died in 1998. She had taken part in Professor Shaw’s research to find more MND genes. She was one of the first people that they identified the gene in. Professor Shaw then identified the gene in me.

Pre-implantation Genetic Diagnosis (PGD) is similar to IVF. You get lots of eggs, and you fertilise the eggs. When the embryos are 10 cells in size, they take one cell out and test for the MND gene. Three embryos didn’t have the gene and two did.

They put the best one back in and, lo and behold, it worked. Our son was the first child in the UK conceived through PGD for Motor Neurone Disease. It’s a blessing to know that for our family this illness stops with this generation.’  

A collaboration between Professor Shaw’s team, the King’s Genetics Department and IVF units achieved a UK first when they enabled a baby boy to be born free of MND – the same disease that took the lives of three members of his family. The Motor Neurone Disease (MND) gene has passed through three generations of Linda’s family – her grandfather, mother and brother all died from MND.

Read more about Linda’s story here

Next steps in Professor Shaw’s research

As many people develop MND after having children, PGD is not a complete solution. That’s why we need your help to drive forward innovative treatments such as gene therapy. Synthetic genes injected into the spinal fluid are capable of ‘knocking down’ the toxic MND-causing protein – slowing or even arresting the disease in its tracks. Professor Shaw is very excited about the potential of this new therapy,

‘We have gone from gene discovery to gene therapy. This is something that we’ve talked about for decades, but are now actually on the brink of delivering. This is no longer science fiction - it’s right around the corner.’

Trials of gene therapy for Motor Neurone Disease are due to take place at King’s in the very near future.

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