Helena Bonham Carter Is New Patron Of Action Duchenne, The Duchenne Muscular Dystrophy Charity, UK

Main Category: Muscular Dystrophy / ALS
Article Date: 03 Oct 2008 - 2:00 PDT

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Action Duchenne adds actress to list of famous patrons providing support and comfort to sufferers of devastating illness

Helena Bonham Carter is the latest of a line of celebrities to support Action Duchenne, the Charity established to support parents and sufferers of Duchenne Muscular Dystrophy. Duchenne affects 2,500 people in the UK and about 40,000 people worldwide. It has no cure and is caused by mutations in the dystrophin gene that prevent correct reading of the genetic code, the result of which is that the essential muscle protein dystrophin is not produced. This results in progressive muscle wasting, severely limiting mobility in teenage patients (boys and men) and leading to premature death in their twenties from respiratory or cardiac problems (the heart muscle is directly affected by the genetic defect).

Helena Bonham Carter (42) is an Oscar and Golden Globe-nominated English actress. She is best known for her portrayals of Lucy Honeychurch in the film A Room with a View, Bellatrix Lestrange in Harry Potter and the Order of the Phoenix and her Golden Globe-nominated performance as Mrs. Lovett in Sweeney Todd. The actress becomes the first patron of the charity and joins other famous supporters of the charity, including Tim Henman, OBE, Mike Brearley OBE, Maureen Lipman, CBE, Lloyd Honeyghan, Lord David Puttnam and Bryan Robson, OBE.

Helena Bonham-Carter said: "As a patron of Action Duchenne, I would like to urge as many people as possible to find out about the work of the charity and the devastating effects of Duchenne Muscular Dystrophy. Treatments and a cure seem tantalisingly close but they will not appear without further support and funding. Please join Action Duchenne in helping to make muscle wasting history."

Nick Catlin, CEO of Action Duchenne said; "Helena Bonham Carter and our other supporters provide an incredible boost to all Duchenne sufferers and their families. It is uplifting that people whose lives are untouched by this disease are still able to demonstrate compassion and support for families that are affected by this devastating, life-limiting condition. We are very grateful to all our patrons and the support that they give - our fundraising efforts will continue to be a focus to find a cure for this disease."

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.

Action Duchenne