20th November 2019

After discussions in late 2016, Duchenne UK funded a project with Dr Keith Foster at Reading University.

The aim of the project was to test a number of different nutraceuticals and vitamins, both separately and in combination, in a mouse model of DMD to look for positive indications which might warrant further research.

The project was in response to questions in the community about whether any research had been done on supplements and nutraceuticals that were being used by patients.

The project was ambitious, and it encountered practical and technical issues in setting up vitro metrics of disease pathology. Additionally, there were challenges encountered by the University unrelated to the program. We were extremely disappointed that this project did not give us the data we hoped for, and we decided on its early termination. The total cost of this project would have been £179K and we had paid three instalments totalling £143K. The final payment of £36K was not paid.

It may be of interest to know that we are still actively supporting two exciting projects which would fall under the ‘nutraceuticals’ banner: Prof Peter Arthur in Perth is looking into the use of taurine as a supplement, with a good rationale, and Prof Steve Winder is investigating key elements found in Haelan (soy extract), specifically Bowman Burke Inhibitor. We will let you know how those progress in due course.

Duchenne UK is committed to bringing treatments to this generation of patients, which is why we have invested £14 million into a wide range of projects from early stage exploratory research, through pre-clinical development on to clinical trials and the associated processes needed to ensure treatments reach patients. We have funded more than 100 projects since 2013 and always follow up those that show promise.

We are so grateful to you, our community, for helping us to fundraise – we know how much effort you put in to raise the money we need to fund the work that will make a difference to our boys. We are committed to being as transparent as we can with the way we use the money you raise for us, and so while it’s difficult for us to share disappointing news, it is important that we do share it.

For further details on this, or if you’d like some more information on specific projects, do feel free to email our Research Director Dr David Bull on [email protected]


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