Wellcome Trust Centre For Mitochondrial Research

Unique Partnership to Improve Patient Care

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The Lily Foundation and the Wellcome Centre for Mitochondrial Research (WCMR) at Newcastle University today announced a strategic partnership to improve the lives of people affected by mitochondrial disease.

The announcement signals a strengthening of bonds between the UK’s leading mitochondrial disease charity and Newcastle’s internationally renowned research centre, which have collaborated closely for years to provide support and clinical care to mitochondrial patients and their families.

Liz Curtis, CEO and Co-Founder of The Lily Foundation, said “We see this as a really positive example of how a charity like ours can work together with a leading research centre to help ensure the very best care, support and services for patients and their families. Over the years we have forged ever stronger links with the team at Newcastle, always with the shared goal to improve the lives of people affected by mitochondrial disease. By consolidating our partnership we can be even more effective in our mission to expand and improve the information, services and care we offer to people living with mito, and get closer to realising our long-term goal of finding a cure.”

Professor Sir Doug Turnbull, Director of the WCMR, said: “It has long been recognised that collaboration is vital in the fight against mitochondrial disease. The unique partnership between the WCMR and The Lily Foundation is a collaboration that will expedite the best patient advocacy, care and treatment for those affected by the condition. By working together, the joint venture will allow better support for patients and families right across the country.”

The WCMR is comprised of a multidisciplinary team of doctors, nurses, scientists and researchers, all working to improve the lives of those affected by mitochondrial disease. The Newcastle Clinical Service, which is part of the NHS Highly Specialised Service for Rare Mitochondrial Disorders, provides care for nearly 1,000 patients across the UK. In recognition of his work Professor Sir Doug Turnbull was recently made a Fellow of The Royal Society, in addition to receiving a knighthood in 2016.

The partnership is a key example of how Newcastle University’s new Vision and Strategy is bringing leading organisations together.

Professor Chris Day, Vice-Chancellor and President​, said: “This collaboration between our Wellcome Centre for Mitochondrial Research and The Lily Foundation is a shining example of two of the guiding principles of our Strategy: ‘working together’ and ‘visibly leading’.

“Our mitochondrial research is truly world-leading, but this partnership demonstrates why we believe that by working together with our partners, this research can make an even bigger impact on the care of patients with mitochondrial diseases locally, nationally and across the globe.”

The Lily Foundation was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from mitochondrial disease at eight months old. Finding little in the way of specialist knowledge or support available to help her through her ordeal, Liz set out to provide answers for herself and others in her situation. What began as an informal network of family and friends quickly grew into a national charity, which today supports over 500 families and has funded over £2 million in mitochondrial disease research.

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