Our challenge is to rocket-boost research on MND

MOTOR Neurone Disease research is at a tipping point. When I started working on it, nearly 28 years ago, it was seen as a rare, hopeless disease that could never be cured. Now we know it is not really rare – it’s just that it usually kills people within a couple of years so there are never many around with it.

- Prof Ammar Al-Chalabi

More importantly, we now know it is possible to cure MND with the right tools.

For example, gene therapy, a type of treatment that edits someone’s DNA, works in a childhood condition similar to MND. Gene therapy trials for MND are happening now. But even if that treatment works, it will only cure about 10 per cent of people with the condition – those who have a genetic predisposition. The other 90 per cent still need effective medicine.

Thankfully, we are making huge strides and we know more than ever before about what causes the disease, why the nerve cells die off, and how we might keep them healthy.

But we need proper investment. Diseases such as MND, dementia and Parkinson’s will become more common in the future because of the way the population is changing. MND often strikes people in the prime of life, just when they have families when they are at their career-best.

Around a third of sufferers die within a year of diagnosis and half within two years. This dreadful outlook is a tragedy for those living with it, but this rapid disease progression also means we can learn about what might treat it quickly. And what we learn can be applied to dementia and Parkinson’s because they are caused by similar problems in the nervous system.