Chiswick Woman's Work for Charity Earns Her OBE
Emily Reuben set up Duchenne UK which helps those with muscular dystrophy
Emily Reuben
June 17, 2023
A woman from Chiswick who set up a charity to help people with the same disease that her son Eli was suffering from has been given an OBE in the King’s Birthday Honours list.
Emily Reuben founded Duchenne UK in 2012 along with Alex Johnson who has been similarly awarded. Both women had sons who were diagnosed with Duchenne muscular dystrophy (DMD), a progressive condition diagnosed in childhood that causes all the muscles in the body to gradually weaken.
This began 11 years of campaigning to improve the experiences of people with the disease and their families. Over £18 million has been raised in this time which has funded clinical trials of promising medicines and set up a DMD medical research hub, been used to set up DMD Care UK, a national care programme for patients with DMD to stop patients with DMD dying too young because they were not getting the right care and helped to develop innovative technologies, such as the SMART Suit and Dream Chair, to support the independence of people with DMD.
Emily had previously worked as a reporter and anchor for Channel 4 News and CNN International. Since setting up the charity she has advocated on behalf of patients around the world in meetings at the Food and Drug Administration (FDA), European Medicines Agency (EMA), Medicines and Healthcare products Regulatory Agency (MHRA), National Institute for Health and Care Excellence (NICE), and Scottish Medicines Consortium (SMC).
She was praised in the House of Commons for the charity’s work by the then Minister for Life Sciences.
Emily, who remains the Chief Executive of Duchenne UK, said after the announcement of the OBE, “I am honoured to receive this award. I accept it not for myself, but on behalf of everyone at Duchenne UK. Without the support of Duchenne patients, their families, doctors and academics we could not have changed the world in the way that we are doing.
“I am grateful that this award gives me the opportunity to highlight the work of Duchenne UK and the desperate need to get treatments and best care to those with Duchenne muscular dystrophy.”
There is currently no cure for DMD, but Duchenne UK is at the forefront of work in the UK to advance treatments and care for everyone affected by the disease.
The charity has tackled some of the big challenges in drug development in their search to accelerate the development of treatments. In 11 years they have raised more than £18 million and have used this money to:
Congratulating Emily and Alex on their awards, Krishnan Guru-Murthy, Chair of Duchenne UK, said, “Emily Reuben and Alex Johnson were both mothers desperately searching for hope after their children were diagnosed with the shockingly cruel Duchenne muscular dystrophy. Between them they created an extraordinary charity which funds research, helps get it from the lab into clinical trials, pushes rivals to work together and lobbies governments to accelerate the approval and delivery of new treatments.
“They are now also pioneering new technology to improve the lives of those who’ve already lost much of their muscle function. Alex and Emily have, whilst living with the heart-breaking reality of having boys with Duchenne, dedicated their lives to transforming the scientific landscape and bringing hope to families with Duchenne worldwide. They are truly deserving of their honours.”
Welcoming their award, Volker Straub, Harold Macmillan Professor of Medicine and Professor of Neuromuscular Genetics at the Institute of Translational and Clinical Research at Newcastle University and Director of the university’s John Walton Muscular Dystrophy Research Centre, said, “This is a wonderful and well-deserved acknowledgement of the fantastic work that Emily and Alex have done over the years for the entire Duchenne community in the UK, and beyond. The two of them, with the support of their families and their foundations, have helped to raise awareness for the unmet needs of people living with Duchenne muscular dystrophy. They have brought the stakeholder community together to accelerate drug development programmes, optimise care standards, and improve the lives of those affected by this devastating condition.
“I applaud them for their amazing achievements, wish them all the best for their current and future projects, and congratulate them for their honours.”
You can find out more about the work of Duchenne UK at duchenneuk.org.
If there is anybody else from Chiswick that has been included in the recently published honours list, please let us know by emailing editor@chiswickw4.com.
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