Action Duchenne, initially called Parent Project UK, was set up in 2001 by Nick Catlin and Dr Janet Hoskin, when their son Saul was diagnosed with Duchenne Muscular Dystrophy. The charity was the first organisation in the UK dedicated exclusively to Duchenne and Becker Muscular Dystrophy and, with the help and support of friends and supporters and other Duchenne families, developed into a national organisation.
In 2003, the Right Honourable MP Kevin Brennan worked with Parent Project UK to set up the All Party Parliamentary Group on Muscular Dystrophy which has continued to be a powerful voice in the campaign for improved standards of care and promotion of research in Duchenne Muscular Dystrophy. In addition, in this year Parent Project UK was involved in the setting up of the United Parent Project Muscular Dystrophy Group. This sought to bring together various patient organisations from across the world to look for treatments and/or a potential cure for Duchenne. In 2004, Parent Project UK mobilised a campaign of families and supporters to gain Government funding ultimately of over £4 million for the MDEX project on exon-skipping.
In 2003, our first International Conference brought together researchers from across the world where we presented our first research grant to Imperial College London to fund an early exon-skipping project which has paved the way for the current exon-skipping clinical trials. Since then Action Duchenne has funded more than 15 cutting edge research projects that aim to find treatments or a cure for Duchenne Muscular Dystrophy. You can read more about the projects we are currently funding here , and find information on everything we have supported in the past here .
In 2006 the DMD registry was set up by Action Duchenne. This was the first patient registry for Duchenne in the UK and one of the first patient registries for Neuromuscular Disease in the World. This has continued to be crucial in recruiting for clinical trials. In 2011 Action Duchenne became one of the first members of the Duchenne Alliance and will continue to fund research and support campaigns through this collaborative group of patient-led organisations. In 2011, Action Duchenne’s lottery-funded education project ‘Include Duchenne’ won the National Lottery Award for Education. This project worked with over 80 young people with Duchenne, their families and schools in order to improve reading skills through the Decipha Programme .
Action Duchenne’s main aim has always been to find a cure for Duchenne and Becker through fundraising and campaigning to raise awareness and develop the necessary protocols. However, there needs to be a dual strategy: searching for a cure whilst, at the same time, ensuring that everyone was gets the standard of care necessary to have the best life possible. This not only includes best medical care from qualified professionals in Centres of Excellence, but educational and social care so that young people with Duchenne and their families can look forward to a brighter future that involves good job or training prospects, independent living options and necessary support. Action Duchenne continues to fundraise, campaign and provide support and educational expertise to young people and families affected by Duchenne and we are grateful to all our fantastic families and supporters for making this work possible.