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Lisa Auchinvole, 40, aims to raise £10,000 to support Action Duchenne charity for muscle wasting disease after friend’s son diagnosed.

Lisa Auchinvole, successful owner of tfd health and fitness club in Wantage, Oxfordshire, is attempting to swim the English Channel at the beginning of September. Lisa has been training for over a year for the swim which, dependent upon the weather conditions, will take place on 4th, 5th or 6th September. 40 year old Lisa is undertaking the personal challenge with the aim of raising £10,000 for Action Duchenne, the charity dedicated to finding a cure for Duchenne Muscular Dystrophy. Lisa’s childhood friend Trudi Carpenter has an eight year old son, Adam, who is living with Duchenne. The life limiting disease is caused by damage to the dystrophin gene and affects 1 in 3,500 male births in the UK.

Under the rules of the Channel Swimming Association (founded in 1927), Lisa’s swim must be undertaken from Dover to Cap Gris-Nez in France, in just a swimming costume, hat goggles and grease, accompanied by a pilot boat. The boat helps to steer a safe path through the waters and provide food and drinks (with no direct contact) during the swim, which takes an average of 12-15 hours, starting in the early hours between 2 am and 3 am.

During her training Lisa has been getting used to swimming front crawl for long distances in lakes, rivers and the sea across the UK, in water averaging 15 to 17°c. In June she swam across Lake Windermere and recently from Portland to Lulworth Cove, Dorset – a five hour swim. Her most recent and final training session was a non-stop 12 hour swim in an unheated pool at her own health club.

According to Lisa, “The Channel swim is a challenge for me personally and to raise as much money as I can for Action Duchenne. I am hoping to finish in about 12 hours, but I must admit I am nervous about the recent reports of sharks. I have been asked how I will endure the tiredness and pain - to me it is just for one day in my life, I do not have any of the challenges that Trudi and Steve have every day.

“I was devastated when I learnt of Adam’s condition and wanted to support the family as best I can. This event is just part of a tireless fundraising campaign that Trudi and her husband Steve run to raise money for the charity. Action Duchenne funds vital research and drug trials that could make an enormous difference to the life of Adam and other boys and young men living with Duchenne.”

Trudi Carpenter said; “We are overwhelmed by the support that we have received from families and friends since we received the devastating news of Adam’s condition when he was four years old. Lisa’s commitment to our cause with her channel swim shows us just how much she wants to give her help and support and will be a tremendous achievement.”

The former Olympic swimmer Sharron Davies has sent words of encouragement to Lisa, who won medals for Oxford as an under 11 swimmer and was a county competitor in her teens. To donate to Lisa’s channel swim, please visit www.justgiving.com/lisaschannelswim.

Nick Catlin CEO at Action Duchenne commented; “Through the dedication and commitment of our many supporters we are starting to make a real difference. Recent results from trials have shown that progress has been made in combating this devastating disease. It is the tireless campaigning and fundraising from our friends, families and supporters that has made this possible.”

-ends-

Notes to Editors

About Action Duchenne
Established in 2001 Action Duchenne aims to support and promote innovative research into a cure and effective medicines for Duchenne/Becker Muscular Dystrophy.

The charity, which is led by Duchenne families, aims to promote awareness of the condition, to improve care services, and provide access to a range of educational and support/development programmes for people living with Duchenne at every stage of the condition. This is achieved by working in partnership with government agencies, NHS and care organisations, other charities, academic, scientific and research groups, and biotech companies worldwide.

Action Duchenne is actively campaigning for best practice in care for Duchenne based on the publication of an international consensus document in Lancet Neurology in Jan/Feb 2010. The published article was the product of an extensive review by 84 international experts in Duchenne Muscular Dystrophy diagnosis and care, and was supported by the Centers for Disease Control (CDC) in the US. It provides an expert guide to recommendations on the multidisciplinary care that should be available to all individuals with Duchenne. Several Duchenne patient organisations including Action Duchenne and the TREAT-NMD network have helped to produce a ‘Guide for Families’, based on the original academic article, which is written in language accessible to all without a medical background.

Since 2003 Action Duchenne has provided £4m for research projects and partnerships. The charity has worked with the MDEX consortium, Department of Health, and the Medical Research Council to deliver new clinical trials for Duchenne drugs. In addition, it has been instrumental in developing projects with biotech companies both in the UK and US including key projects with AVI Biopharma and Summit.
In 2005 Action Duchenne launched the DMD Patient Registry, a national database that holds gene information of people living with Duchenne that is used to speed up the recruitment of patients for clinical trials. For more information please visit: www.dmdregistry.org

In 2008 Action Duchenne launched the Include Duchenne project in partnership with Decipha. This programme addresses the learning and behaviour needs of those living with Duchenne. For more information please visit: www.decipha.org

Action Duchenne promotes social inclusion within the community for young men living with Duchenne through its Genius programme. For more information please visit: www.actionduchenne.org/geniusproject
In 2010 the National Advocacy Council was launched to spearhead the lobby for government funding for research into Duchenne and to improve access to Standards of Care. www.actionduchenne.org/NAC

For more information please visit: www.actionduchenne.org

Editors Contacts
Nick Catlin
CEO, Action Duchenne
Tel: 0208 556 9955
Email: nick@actionduchenne.org

Andreina West
PR Artistry Limited
Tel: 01491 639500
email: Andreina@pra-ltd.co.uk

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