MND Scotland has invested more than half of the charity’s annual turnover into a ground-breaking clinical drug trial for Motor Neurone Disease (MND)

A charity has made a huge investment in treatment that could provide great hope to those with a debilitating condition.

MND Scotland has invested more than half of the charity’s annual turnover into a ground-breaking clinical drug trial for Motor Neurone Disease (MND).

In 2018, the Scottish charity committed to bringing more MND trials to Scotland, and by investing £1.5 million into a new UK-wide drug trial, this pioneering research is now taking place.

This investment accounts for more than half of the charity’s annual turnover, highlighting just how important finding a cure is to MND Scotland and its supporters.

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.

Currently, over 400 people in Scotland are living with MND and one of the unique aspects to this trial is that it will be open to almost every person in Scotland with the illness.

The platform, MND-SMART, which is being led by researchers at the Euan MacDonald Centre for MND Research at the University of Edinburgh, aims to find treatments that can slow, stop or reverse progression of the terminal disease.

While typical clinical trials focus on a single drug, MND-SMART will allow more than one treatment to be tested at a time. This gives patients a higher chance of receiving an active treatment, rather than the placebo.

The platform has been developed to find effective medicines more quickly and will include as many people with the condition as possible, regardless of how the disease or current treatments affect them.

The clinical trial is designed to be adaptive so that the researchers can modify their approach according to emerging results. New drugs can be added once the trial has started, while medicines that prove ineffective can be dropped.

Initially researchers will test drugs that are already licensed for use in other conditions to check whether they offer any benefit for people with MND.

This repurposing of existing drugs avoids some of the lengthy approvals processes associated with new drugs and could cut years off the time taken for the medications to become available to people with MND through the NHS.

Lawrence Cowan, chair of MND Scotland, said: “Today is an historic moment in our fightback against Motor Neurone Disease and because of the incredible generosity of our supporters, MND Scotland has invested £1.5 million into MND-SMART.

“MND killed my best friend Gordon Aikman so suddenly, I never got a chance to say a proper goodbye. But I did make a promise to him that I would fight for everyone to have access to drug trials. I wish he was here to see this day.

“This is one of the biggest MND trials the UK has ever seen - and it’s open to almost everyone with the disease.

“We will continue to fight to give people with MND access to effective treatments, and to beat MND once and for all. Together we can make it happen.”

Dr Suvankar Pal, neurologist and MND-SMART co-investigator, said: “We’re very excited to be launching this trial. It gives real hope to people with MND across the UK.

“We’re hugely grateful to the people with MND who have helped us design the trial and we think their involvement will mean that far more people will be able to take part.

“I would also like to thank our key strategic partners, and specifically MND Scotland, alongside all the donors and fundraisers who have made this possible.”