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Q&A with Dr Madina Kara, Interim Director of Research at My Name’5 Doddie Foundation

03 October 2025


International funding is crucial to the success of the Longitude Prize on ALS – and we are proud to be supported by leading charities and organisations from across the globe. 

My Name’5 Doddie is one of the nine contributory funders behind the Prize. We recently spoke to Dr Madina Kara, Interim Director of Research, who told us about the vital work that the Foundation is currently focused on, and its motivation behind supporting the Longitude Prize on ALS. She also offers invaluable advice to anyone thinking of applying – whether an AI innovator, tech specialist or medical researcher. 

What is the main focus of your organisation and your core ambition?

Our vision is a world free of MND. Our core ambition is to fund, guide and enable the smartest, most efficient research that will expedite the development of new treatments and ultimately cure MND. We do this by delivering on our research strategy, Catalysing a Cure, funding discovery, translational and clinical research, as well as the infrastructure to enable more people living with MND to take part in research.

Are there any particular challenges or opportunities that you’re focused on at the moment?

Our focus is on delivering against our strategic priorities outlined in our research strategy:

  • Validating therapeutic targets: to drive progress in the search for effective treatments and a cure, we invest in research that aims to identify and robustly validate new targets.

  • Accelerating new treatments: we want to support a vibrant and engaged MND drug discovery community and act as a catalyst to bring together academics, industry, charities and investors to accelerate new treatments.

  • Improving translation: many new treatments for MND have shown great potential in the lab but failed to slow or stop disease progression when tested in people living with MND. Translation from the lab to the clinic needs to be improved and we will enable this through focusing on initiatives to support earlier detection and diagnosis; support better biomarker identification and patient stratification strategies. For example, we are working with the International Alliance of ALS/MND Associations on a project to develop an educational resource to enable the speed up the diagnosis of MND, which will allow people access to treatment or clinical trials earlier.

What is your role within the bigger picture of neurodegenerative disease research?

As was the vision of our founder, Doddie Weir OBE, we have been known as “disruptive funders”, putting research at the forefront of everything we do and allowing it to progress at pace. We aim to maintain this stance and shake up the way that research is funded in MND and neurodegeneration more widely.

We are co-funders of the UK MND Research Institute, a national network of MND centres working together to understand how and why MND happens, what might work as a treatment, and testing possible treatments in clinical trials, alongside the MND Association, LifeArc, MND Scotland, the Medical Research Council (MRC) and National Institute of Health and Care Research (NIHR). The four charities will also continue to fund Phase 2 of the UK MNDRI from January 2026 to enable the coordination of MND research across the country to accelerate the search for a cure.

We also contribute funding towards the EXPErimental medicine Route to Success in ALS (EXPERTS-ALS) platform, led by Professor Chris McDermott at the University of Sheffield and Professor Martin Turner at the University of Oxford, which is a flagship study within the broader portfolio of the UK MNDRI. Our funding will enable nested biomarker studies within EXPERTS-ALS.

We also work in partnership with the MND research and patient community including the United to End MND patient coalition to influence the UK government to increase funding for MND research, which has been traditionally underfunded. 

Applications to the Longitude Prize on ALS are open until 3 December 2025. 

What inspired you to fund the Longitude Prize on ALS?

The Longitude Prize on ALS provides a unique opportunity to bring together scientists and technology experts from across the globe to form collaborations that may not have occurred without the incentive provided by the Prize. As the Prize is focusing on the use of a large, global dataset; modern technologies; and artificial intelligence for drug discovery, it could provide insights that we have not seen before. 

The challenge prize format is also a very different approach compared to our grant programmes. We are eager to support varied approaches to tackling MND in our search for a cure, and the Longitude Prize on ALS offers that. 

Further, the prize brings together a range of UK and international funders, researchers and datasets, and will hopefully also attract people who have not worked in ALS research before, so that we can benefit from their expertise and hasten the pace of drug discovery in ALS. 

Is there any advice that you would offer to innovators thinking about applying to the Prize?

Building a multidisciplinary team will be essential to success. Teams will require a varied skillset: knowledge of data science, AI, and an understanding of the biological and clinical aspects of ALS – and so linking with ALS researchers will add significant value to teams.

It is important to consider how those affected by MND can be included in teams. People with lived experience of the condition bring a wealth of knowledge and can be key advisors both in planning your work but also in cascading findings at later stages. Their inclusion is also more likely to make research more applicable to real world impacts of MND and move it from theory to being more practical and translatable. 

From a practical perspective, getting your application ready well in advance of the deadline and reviewed by colleagues and ‘fresh eyes’ can be incredibly helpful, and make for a better application. 

What do you see as the longer-term opportunities for those who enter the Prize?

The Prize offers applicants the opportunity for networking and collaboration with other experts from all over the world, which most likely would not be the case otherwise. This allows researchers and those with AI expertise to talk about their ideas and findings - sparking innovation and new ideas.

In addition, the team behind the Longitude Prize on ALS has worked to bring together genomic, multi-omic and clinical datasets, which will enable participants who enter the Prize to gain access to unique insights into the disease and possible drug targets. 

We’re three months on from the launch of the Longitude Prize on ALS – an exciting moment for the international ALS network. What do you see as the next most exciting point in the Prize?

We are excited to see the range of applications to the Prize from around the world, combining biological and technological expertise to harness AI to uncover novel therapeutic targets or provide new evidence for known but unvalidated targets for ALS. We hope applicants have been ambitious in their plans with innovative methodologies being used, and look forward to seeing the first successful applicants announced next year.