Duchenne UK news

Her Majesty The Queen renews patronage of Duchenne UK

Duchenne UK is delighted to announce that Her Majesty The Queen has chosen to continue her role as President of the charity following a review of Patronages by the Royal Household.

(Photo credit: Hugo Burnand)

Duchenne UK was founded 2012 by Emily Reuben OBE and Alex Johnson OBE following both of their sons being diagnosed with the muscle wasting disease Duchenne muscular dystrophy (DMD).

They set up Duchenne UK to improve the lives of people with DMD by raising funds to uncover new DMD treatments as well as developing innovative technologies to support the independence of people with DMD.   To support this vital work, they’ve established a national clinical trial infrastructure, the DMD Hub, to bring research to the UK, developed a national care programme, DMD Care UK, that is establishing best practice across all the disciplines involved in care for DMD, and developed a pioneering collaboration with pharmaceutical companies, Project Hercules, to accelerate access to treatments through the approval and reimbursement system.

Her Majesty The Queen, formerly Her Royal Highness The Duchess of Cornwall, became President of Duchenne UK in 2014, and over the past ten years has played a vital role in the growth, development and impact of the charity.

She has hosted a number of events for Duchenne UK, most recently a reception at Clarence House in February 2023, and publicly celebrated our Director of Research and Development, Dr Alessandra Gaeta, on International Women’s Day in 2023 for her leadership of our Elevex arm-assist project.

Thanking Her Majesty The Queen for her continued support, Emily Reuben OBE, co-founder and Chief Executive of Duchenne UK, said:

“We are so grateful to Her Majesty The Queen for choosing to continue her patronage of Duchenne UK. She has been incredibly supportive of the charity and our community, which has meant so much to us. Duchenne muscular dystrophy is not only a devastating disease, but it is a rare one too. That rarity has many implications for treatment and care, but also awareness and understanding of it. Her Majesty The Queen’s steadfast support and commitment to people with Duchenne muscular dystrophy and their families has been so integral. It helps raise the profile of the disease and shine a light on our work. Her support is an important source of strength for the charity.”

Published on 14 May 2024

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