Since we launched in November 2023, the UK MND Research Institute (UK MND RI) has been dedicated to uniting a national network of MND centers with one common goal: to understand motor neurone disease (MND) and accelerate the search for a cure.

Over the past eight months, our community of researchers have been tirelessly working to make this a reality. Today, on MND Awareness Day, we’re celebrating the amazing progress we’ve made together.

WHERE IT ALL STARTED…

The UK MND RI was born out of the United to End MND campaign, where people living with MND, charities and researchers all came together to raise money for targeted MND research.

After two years of petitions, visits to government and parliamentary debates, the government committed £50 million of funding over 5 years for MND research. This was with help from organisations like the My Name’5 Doddie Foundation, MND association, MND Scotland and LifeArc.

Then, in 2023, we used some of this money to form the UK MND RI, with the goal of accelerating the search for a cure by coordinating the research effort and bringing together all MND research centers.

This would include partnerships with patients, charities, and industry to identify new drug targets, new therapies and make sure that these new developments reach people with MND quickly. Since our launch, by working with these partners, we’ve helped to move just under £70 million into MND research.

WHAT HAVE WE ACHIEVED SO FAR?

1) We launched a new ‘buddy’ scheme to benefit patients and researchers.

In December 2023, we launched a series of research fellowships that are designed to support people who are looking to start a career in both clinical and non-clinical research.

Funded by the MND Association and MND Scotland, these fellowships aim to hone the skills of new researchers and spark their interest in MND, encouraging them to become the next generation of leaders in MND research.

However, these fellowships are special because they will assign a ‘buddy’ to each fellow, who will be someone living with MND. This will benefit both researchers and patients, by helping researchers better understand the lived experience of someone who lives with MND whilst also giving people with MND a better understanding of how research works.

2) We improved the collection of sampling to look for biomarkers.

In December last year, we also helped to coordinate the collection of more MND samples to look for new biomarkers for the disease. This included producing a harmonized protocol with its own set of standards of practice, which five different clinical hubs will use.

This is quite an achievement and will help collect new samples that can be used to help find new biomarkers. This could help find new targets for drugs in MND as well as new ways to track progression of the disease.

3) We evaluated the way in which we measure outcomes in ALS

We also supported research that improved the ALSFRS-R scale, a tool which measures the progression and outcomes of ALS. Professor Carolyn Young, who is one of our Programme Leads, published a paper that improved the method used by doctors to analyse the progression and severity of ALS.

This information will help us make better use of the ALSFRS-R questionnaires filled in by people with ALS and help better understand how their condition is progressing. Not only can this help clinicians make more accurate decisions, but it could also help to better inform clinical trials focused on the disease,

4) We developed cell lines to help accelerate the discovery of new drugs

Cells lines form an important part of drug discovery. They help us test drugs and look for new targets that could be used to slow or stop the progression of MND. At the end of last year, we developed brand new cell lines for use in MND research in collaboration with our colleagues at the Dementia Research Institute.

Importantly, we also ensured that researchers created them in the same way at multiple laboratories. Not only does this ensure the highest level of quality research, but also enables us to more easily replicate experiments at different institutes. This will streamline the research and provide new models that will be used in the search for new drugs to treat MND.

In eight months, we’ve made some great progress in our mission and the search for new treatments. From launching innovative fellowship programs to advancing biomarker research, improving ALS outcome measurements, and developing new cell lines, our efforts are driving progress towards understanding and curing MND.

Professor Chris McDermott, who is co-chair of the UK MND RI, added: “I have been most excited by the EXPERTS-ALS programme, which is our soon to launch drug prioritisation platform. Only a year ago this was just an idea of how we could change the pace and scale of the search for effective therapies. Within the next month we hope to recruit our first patients and over the next few years we will rapidly screen drugs for potential benefit. The innovation is in the use of neurofilament as the main outcome measure to see if a drug is having a biological effect. We have had a lot of interest from the worldwide MND scientific community and approaches to collaborate in testing drugs within EXPERTS-ALS. We have plans to further innovate in the clinical trial space which will involve using our telehealth and remote sampling systems to increase participation and reduce burden. Everything that we are doing within the UKMNDRI is in partnership with and shaped by those living with MND.”

These accomplishments would not have been possible without the dedicated support of our partners, researchers, and the MND community. We need to do a great deal more work, but we’re excited about the breakthroughs yet to come.

You can read about our other blogs and news stories here or read about our research here.