September 2019

Duchenne UK is pleased to announce that Her Royal Highness The Duchess of Cornwall has extended her term as President of Duchenne UK for a further 5 years.

HRH The Duchess of Cornwall has been president of the charity (formerly Duchenne Children's Trust) since 2014. During this time, Duchenne UK has continued to drive momentum to deliver treatments to help THIS generation of those with Duchenne muscular dystrophy (DMD).

Duchenne UK has invested millions of pounds in research, clinical trials and supporting trial centres in the UK, helping us move ever closer to effective treatments for DMD.

Duchenne UK is the largest funder of DMD research in the UK in the last 5 years. The charity has spent more than £8 million on research and committed a further £6 million to accelerate the search for treatments and a cure.

Emily Crossley & Alex Johnson, co-founders of Duchenne UK, said:

We are extremely grateful to HRH The Duchess of Cornwall for extending her presidency for another 5 years. Her continued support of the charity, right from the early days has been immensely important and we would like to thank her for everything she has done to help us and our community.

 


NOTES FOR EDITORS

What is Duchenne Muscular Dystrophy?

Duchenne muscular dystrophy (DMD) 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.

We are investing millions of pounds in research right now to bring treatments and a cure to help this generation. Duchenne UK is the largest funder of DMD research in the UK. We are also committed to accelerating the pace of research. 90p in every £1 raised is committed to research.

Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell. 

We need your help, because we need to keep funding promising new research.

How to donate?

Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

  • Direct Debit – Duchenne Direct
  • Individual Donation – Donate
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
  • Take part in one of our fundraising events – Events
  • Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.

For more information visit www.duchenneuk.org