October 2019

On Saturday 28th of September we hosted our fifth free information day in Manchester. We run these days for patients and caregivers to get help them get the most recent updates on DMD research and care.

This is always a really useful opportunity to meet fellow parents and update the community on research and care.

We would like to say a big thanks to all the speakers, but especially to everyone who attended and gave such valuable contributions to the discussions.

It was a brilliant day bringing together people new to the Duchenne community and those who can share their experience.

Some feedback from the day:

"I came here to learn about the latest research about DMD, and not only did I get that, I learned about entrepreneurship, passion and making an impact. This is a different type of charity!"

View the full feedback document hereYou can view some photos here.

Here are the presentation slides from the day:

View the Agenda here.

Andy Burnham, Mayor of Greater Manchester kindly stopped by and pledged to keep supporting the charity's efforts to accelerate research.

We will be sharing the date for the next day soon, so please check back.


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