Help Action Duchenne Continue Their Vital Work This August by Voting in Our Charity Poll

Posted on 27 Jul 2020 by Amy Jackson
Action Duchenne Logo

Duchenne muscular dystrophy affects around 2,500 people in the UK. Formed in 2001, Action Duchenne are the first national charity supporting people with Duchenne, and their vision is for a world where lives are no longer limited by the condition.

Duchenne is a severe, life-limiting muscle wasting condition, which affects the heart and lungs. It is 100% fatal, with a life-expectancy of only 30 years. Each of the 2,500 affected children are considered in the ‘extremely vulnerable’ section of the UK community during COVID-19.

 

 

 

What Does Action Duchenne Do? 


Action Duchenne have three core objectives when it comes to delivering their work.

  • To develop effective treatments for everyone, through funding research, educating professionals and supporting clinical trials.

  • Building a community by uniting families affected by the condition, and through education and raising awareness.

  • Working towards a more inclusive society, promoting equality and day to day acceptance of disability.


To date, the charity’s work has seen over £10m being invested in research, education and campaigns.

 

Achievements


Action Duchenne works with other charities, the NHS, researchers, academics and drug companies to help bring about the changes that are needed. The Duchenne community also provides a great deal of input and this goes towards the charity being able to help and educate others. Their work has seen a number of achievements over the years.

  • Managing the UK DMD Registry, which has helped to increase the amount of clinical trials in the UK.

  • Research leading to the development of a potential gene therapy for Duchenne.

  • Acting as a springboard for DMD patient groups.

  • Campaigning for the first drug able to treat an underlying cause of Duchenne to be made available across the UK.

  • Educating people on the condition via social media.

  • Hosting their annual conference, bringing together families, professionals, researchers and drug companies.


 

Support Action Duchenne


Action Duchenne supports over 1000 families affected by the condition every year. As a result of the Covid-19 pandemic, the charity have faced a huge impact on their fundraising abilities thanks to the cancellation of events, as well as an increase in demand for their services. This August, we are proud to be supporting Action Duchenne in our charity poll. Please cast your vote for them and help them continue providing support to the families who need it the most.

Find out more about Action Duchenne, including how to donate, by visiting their website

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