What We Do News Duchenne UK welcomes new Director of Patient Engagement and Clinical Care Professor Francesco Muntoni, Paediatric Neurologist, Great Ormond Street Hospital says he’s “thrilled” to hear she will now be joining Duchenne UK Duchenne UK is pleased to announce that Naomi Litchfield (nee Antcliff) is joining as Director of Research and Patient Engagement. Naomi will be known to families who have taken part in research at Great Ormond Street Hospital. She worked in Professor Francesco’s Muntoni’s clinical research team for seven years. “Naomi has a deep knowledge of what it means to have DMD, having been involved for years in many clinical trials and natural history studies at GOSH”, says Professor Muntoni. “She played a very positive role in the team of the clinical research facility by her empathy and dedication to clinical research, maintaining both the highest standards of research, and at the same time ensuring that children and their families felt, as much as possible, in a friendly and comfortable environment when attending the research appointments. I am really thrilled to hear that she will be joining Duchenne UK, I am certain she will provide a very positive input to your charity for the benefit of DMD boys and their families. Welcome back Naomi!” Naomi trained as a paediatric nurse at the John Radcliffe Hospital in Oxford, before joining Great Ormond Street Hospital where she worked as a senior clinical research nurse in the neuromuscular team. After GOSH, she gained industry experience working at Clinigen and Biomarin. “I am absolutely delighted to join Duchenne UK and to be back in the Duchenne community where I belong”, says Naomi. “This incredible opportunity is a dream come true for me both professionally and personally. I am so excited to drive the ongoing and upcoming projects adding as much value as I can. I am very passionate about putting the boys and their families at the heart of everything we do. I am fortunate enough to have cared for many Duchenne families and worked in industry, to have a unique approach to pull my clinical expertise and knowledge together to enhance the acceleration of new treatments for Duchenne boys.' Naomi has front line clinical experience, as well as industry experience. At Clinigen she helped drug companies and hospitals get access to medicines for clinical trials. At Biomarin she worked on the development of potential treatments for Duchenne Muscular Dystrophy, supporting clinical operations and working with patient advocacy groups. Alex Johnson, Co-Founder of Duchenne UK said; “We are so pleased that Naomi is joining Duchenne UK at what is a very exciting time in the charity’s development. Her front line clinical experience, combined with her medical knowledge and experience in industry, will be crucial in helping us develop and grow our various research projects, and in helping us engage more with the community about how to put patients at the heart of research and improve outcomes for all stakeholders.” NOTES FOR EDITORS For more information please visit our website at www.duchenneuk.org, for interview requests please contact Molly at [email protected] What is Duchenne Muscular Dystrophy? Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease. Who are Duchenne UK? Duchenne UK is a lean, ambitious, and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy. The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.