Parliamentary Minister To Speak At Sixth Annual Action Duchenne Conference In London

Main Category: Muscular Dystrophy / ALS
Article Date: 21 Oct 2008 - 10:00 PDT

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Duchenne Muscular Dystrophy charity's annual Conference brings together leading International researchers, families, and health and education professionals together.

Action Duchenne has announced that Ann Keen, Parliamentary Under Secretary of State for Health is to be a keynote speaker at its sixth annual Duchenne Conference. The conference is being held at the Holiday Inn Hotel, Bloomsbury, London and runs from Friday 31 October finishing on Sunday 2 November 2008. Minister Ann Keen is working with Action Duchenne to review the current standards of patient care and funding for research. This follows the charity's call for ring fencing funding for Duchenne research. Action Duchenne has also called for the unification of standards of medical care and the establishment of eight Centres of Excellence throughout the UK for sufferers of Duchenne and other neuromuscular diseases.

The two-day conference hosts over 300 delegates and includes presentations, seminars and workshops from leading researchers and expert clinicians from USA, Europe, Australia and the UK in the field of treating and developing new therapies for the disease. Dame Professor Kay Davies from University of Oxford will be delivering a key note speech on Saturday 1stNov. Professor Kate Bushby of Newcastle University Centre for Life (and TREAT-NMD), Professor Francesco Muntoni from Great Ormond Street Hospital , as well as research scientists from Oxford University and University College of London will be chairing sessions.

Duchenne Muscular Dystrophy affects 1 in 3,500 male births in the UK, and is the most common and severe type of muscular dystrophy - sufferers are diagnosed usually by the age of 5. Duchenne affects the heart and respiratory system and many patients do not live past their twenties.

The Parliamentary Under Secretary of State for Health, Ann Keen said, "I am delighted to accept the invitation to give a keynote speech at Action Duchenne's annual conference. I am supportive of the departmental review of policy to see how we can move forward on the charity's call for unified standards of care for those affected by this devastating condition. We are also currently funding ground breaking gene therapy research for Duchenne"

Carl Tilson, 21, living with Duchenne, is running the session entitled 'Young Men with Duchenne'. Carl said, "I am delighted that I am able to chair a session that opens up discussion and learning that will help families who are touched by this disease. This conference provides a unique chance for delegates to find out more and engage support from others."

Mark Silverman, one of the directors of Action Duchenne and a parent said, "This conference is an important opportunity for us to hear about the fantastic developments and progress that we have made to date. As the national charity for Duchenne Muscular Dystrophy, it is also a chance to look at what we need to do to continue to raise our profile and funding to combat Duchenne."

Nick Catlin, CEO of Action Duchenne said, "We have seen this event grow in importance and quality. It is a unique opportunity for all those families and professionals who treat Duchenne Muscular Dystrophy to find out what steps we have made. While we should celebrate our successes, we must not lose our focus to continue to raise funding for developing new treatments and improving the quality of life for those living with Duchenne."

About Action Duchenne

Action Duchenne (formally Parent Project UK) was set up by Duchenne families in 2001 to promote new research for a cure for Duchenne. The charity has a strong record in funding research and has to date funded 8 major projects costing £800,000 and has lead the £1.6m DoH funding of the MDEX project. These projects have enabled much needed early work to be completed on exon skipping and other therapeutic approaches.

Action Duchenne holds an international conference every year to bring together researchers and families to exchange new research developments and provide a vital meeting venue for scientists.

In 2005 Action Duchenne launched the Duchenne Registry, the first National Duchenne database that holds gene information of people living with Duchenne and can be used to speed up the recruitment of patients for clinical trials.

In 2006 Action Duchenne launched a comprehensive learning and behaviour toolkit for use by parents and education professionals.

Sources

Andreina West
PR Artistry Limited

Nick Catlin
Action Duchenne

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