It has been described as one of the few remaining diseases that remains largely a mystery, and yet it takes hundreds of lives in the UK every year.
Motor neuron disease (MND) causes the muscles to wear out after a loss of nerve cells that control movement, speech and breathing.
There is no effective treatment or cure and half of the 1,500 people diagnosed each year die within 24 months.
But now, the largest clinical trial in a generation, led by a team of researchers based in Edinburgh, can offer some hope.
It will test new potential treatments for MND and analyze whether existing treatments for other conditions might have some benefit.
These are the stories of some of those involved.
Alan Gray is excited about the perspective of the trial.
An IT manager with three adult children, Alan was diagnosed with MND in January 2017, when he was 54 years old.
The first symptoms were harmless enough: he kept cutting the pavement while walking, as if his foot had fallen.
Three years later, Alan can no longer walk.
And his home, in Denny, Stirlingshire, has had to adapt especially for him.
Alan admits that the diagnosis was devastating but remains relentlessly optimistic.
“Initially I looked at everything and it’s too overwhelming,” he says.
“So you have to go back and say, ‘Where are we today? What is the plan for tomorrow?’ and maybe look a little further
“I go to the gym three times a week, I receive regular massage therapy to keep the body moving, I follow the physio indications.
“Energy is a real problem because my muscles are weaker, so I have to try to control my energy every day.
“We will do one thing, maybe two things but nothing more.”
Alan has survived so long that he is no longer eligible for most clinical trials.
But this new project, known as MND-Smart, is different, and Alan will be part of it.
“Hope is something really positive,” he says. “With a test now, we can see something from which we can get some hope and strength.”
“As participants, we can help advance science.”
What is the new test?
Currently, there is only one treatment for MND that can prolong life for two or three months.
The new clinical trial will allow hundreds of people living with MNEs in the United Kingdom to participate in tests of possible treatments.
While most trials focus on a single medication or treatment, the MND-Smart trial will evaluate several at the same time.
Patients taking different treatments will be compared to a single group that receives a simulated medication called a placebo.
They are more likely to receive active treatment, but the trial is also designed to be flexible so that researchers can change the medications that are tested as the results emerge.
New medications can be added and medications that are not effective can be eliminated.
It is an approach that has not been used before in the research of MND anywhere in the world.
They will try new medications, but also medications already authorized for other conditions, such as Alzheimer’s disease or anxiety and depression.
The reuse of medicines like this can dramatically accelerate the time needed for effective treatments to be more widely available.
The trial has been developed by people with MNEs who work with clinical trial experts from across the United Kingdom, including University College London, Warwick University and the Euan MacDonald Center for MND Research, at the University of Edinburgh.
The man named after the center worked as an investment banker in London when he was diagnosed with MND in October 2003.
Now, MacDonald is one of the people who has lived the longest with MND, and has used that time to raise money and to get to know the disease.
Like Stephen Hawking, another famous and long-lived MND survivor, he uses a voice synthesizer to speak.
His enthusiasm for the new project being developed by the center that bears his name is obvious, particularly the hope offered by reusing existing medications.
He says: “We are all eager to see the results of the investigation that is happening.
“There are no guarantees, but reuse has worked for other conditions such as cancer.”
“Fundamentally, medications have already been approved as safe to use, so the process is shorter.
“Time is essential, so anything that can accelerate the research process is very welcome.”
For those doctors, nurses and biomedical researchers who specialize in MND, the disease must sometimes feel like a frustrating goal.
Around 5,000 people live with MND in the UK today, but with such low long-term survival rates, there is a limited window to study why it develops and how it progresses.
Consultant neurologist Dr. Suvankar Pal works at the Anne Rowling Regenerative Neurology Clinic at the University of Edinburgh, founded by author J K Rowling in memory of his mother.
Dr. Pal, who will oversee the MND-Smart trial, admits that until now it has been a challenge to find effective treatments.
“That is partly because the mechanism by which brain cells do not function properly is not fully understood,” he says.
“And this condition progresses very quickly, so trying to encourage people to participate in the trials and follow them until later stages of the disease is very difficult.”
Dr. Pal says that other studies have also been hampered by having very few people involved, which means that it has not been possible to obtain significant results.
But the new study offers new hope.
“So far there has been a lack of progress with the discovery of new therapies for motor neuron disease and I believe that anything we can do to improve the quality of life and survival of people with MND is a step forward for this condition”. He says.
Back in Denny, Alan Gray is sitting at the breakfast bar in his kitchen with his wife, Beverley.
Alan and Beverley have focused on creating memories that will last, taking 10 vacations in the year after Alan’s diagnosis.
He says: “I am a very determined person. I have a lot of family and friends and support, so everything helps.
“But I also have a kind of mental hardness to say, ‘You know, it makes no sense to say,’ Well, why me? ‘Or any kind of denial.
“This is the reality. So let’s look for something positive to do, let’s move forward, one step at a time.”