LifeArc, a self-funded, non-profit medical research organisation, are investing an astounding £40 million to establish four new translational research centres across the UK, with the primary goal of ensuring promising scientific discoveries are developed into tools, treatments and, potentially, cures for those living with rare diseases.
For the mitochondrial disease community, the centrepiece of this ambitious initiative is the £7.5 million LifeArc Centre for Rare Mitochondrial Diseases, which will serve as a national platform in the UK to connect specialists, patients, knowledge and infrastructure in order to speed up getting new treatments to clinical trial.
The Lily Foundation are proud to be an integral part of this game-changing collaboration that will advance our learning and understanding of mitochondrial disorders. The project is a huge investment in rare disease research and demonstrates the importance of transforming the landscape in this field.
A national partnership between LifeArc, The Lily Foundation and MDUK, the initiative will be led by Professor Patrick Chinnery, Professor of Neurology at the University of Cambridge and Honorary Consultant Neurologist at Cambridge University Hospitals NHS Trust. Key partners will include University College London, Newcastle University and three other centres – Oxford, Birmingham and Manchester.
LifeArc’s investment is just the beginning of this initiative. The Lily Foundation and MDUK will be joining forces to pledge significant additional funding over the next five years to propel the translational research vision of the centre forward.
Tackling the challenges of rare disease research
Rare disease research can often feel like an enormous jigsaw with many of the pieces missing. This centre will change that, bringing together leading mitochondrial scientists and clinical specialists from all over the UK to access cutting-edge facilities and training.
By bridging the gap between scientific research and clinical development, this initiative will focus on critical areas of unmet need and is committed to delivering life-changing advancements to patients.
Alison Maguire, Head of Research & Innovation at The Lily Foundation, commented: “It has long been recognised that collaboration is vital in the fight against mitochondrial disease. The UK is a world leader in mitochondrial research, and we’re proud to be partnering on such a forward-thinking project with such highly regarded research institutions. Collaboration with patient organisations is key to advancing meaningful research, and this multi-site centre will ensure promising research can be translated into improved treatment options for patients living with this devastating condition.”
Dr Kate Adcock, Director of Research & Innovation at MDUK, added: “We’re delighted to partner with LifeArc and The Lily Foundation to support Professor Chinnery and teams across England for this much-needed effort for rare mitochondrial conditions. We believe the centre has the potential to deliver positive change to people living with these conditions.”
Ensuring the patient voice is heard
And because the patient voice is at the heart of everything we do, The Lily Foundation will be championing the Patient and Public involvement and Engagement of the project, ensuring that every discovery is driven by patient need.
Adult mitochondrial disease patient Adam commented on the announcement: “The news of this investment fills me with hope… It gives voice to the patients who often have to suffer in silence, and I’m excited to see how this project can help mitochondrial disease patients in the future.”
Dr Catriona Crombie, Head of Rare Disease at LifeArc, said: “We’re extremely proud to be launching four new LifeArc Translational Centres for Rare Diseases. Each centre has been awarded funding because it holds real promise for delivering change for people living with rare diseases. These centres also have the potential to create a blueprint for accelerating improvements across other disease areas, including common diseases.”
This is a new chapter in mitochondrial disease research, and we’re delighted to be an integral part of a pioneering project that should bring hope to the whole mito community. Look out for further updates here on our website and on our social channels as this exciting collaboration takes shape.
If you’d like to find out more about this new initiative, you can read LifeArc’s press release announcing the news.