New online resource to help sufferers of rare degenerative disease
A new multilingual website will provide extensive information for people suffering from a devastating type of motor neurone disease called ALS (Amyotrophic Lateral Sclerosis), which kills most sufferers within three to five years of diagnosis. The new online resource is part of the EU-funded project MITOTARGET, which is investigating the underlying causes of ALS. The team hope that the website will be the first port of call for anyone wishing to learn or share information about ALS, including doctors, nurses, patients and members of the public. MitoTarget received EUR 6 million under the Health Theme of the EU's Seventh Framework Programme (FP7). ALS, also known as Lou Gehrig's Disease after the American baseball star who was diagnosed with it in 1939, is a fatal neurodegenerative disease that causes progressive atrophy of the motor neurones (nerve cells) in the central nervous system that control muscle movement and coordination. ALS is not a very well-known condition, although more people die from it each year than from multiple sclerosis. There is currently just one approved drug to treat ALS, and it can only extend a patient's life by about three months. MITOTARGET ('Mitochondrial dysfunction in neurodegenerative diseases: towards new therapeutics') is a 3-year project and consists of 17 partners from five EU countries, namely Belgium, Germany, France, the Netherlands and the UK, and its aim is to study in depth the links between mitochondrial dysfunction and the development of ALS. Mitochondria are organelles that provide energy to cells. Mitochondrial dysfunction plays an important role in the development of neurodegenerative diseases, but the exact process involved is not yet fully clarified. The creation of the new web resource was coordinated by pharmaceutical company Trophos, leader of the MITOTARGET consortium. 'The MITOTARGET consortium wish to develop treatments as quickly as possible for ALS, a rare but terrible and fatal disease,' explained Trophos Chief Executive Officer, Damian Marron. 'We want to make it as easy as possible for sufferers of the disease and for other people, including specialists, physicians, nurses, patients and members of the public, to find out and share information. We hope this will speed up the process of finding cures as well as help all those whose lives have been touched by this devastating disease.' British scientist Stephen Hawking, who is an ALS sufferer and patron of the Motor Neurone Disease Association (MNDA), welcomed the new website: 'It is essential that as much support as possible is given to those who are diagnosed with ALS. Their needs are to live as long as possible in as fulfilling a way as possible,' he said. 'It is encouraging that the MITOTARGET consortium is providing practical online support for all those affected as well as developing treatments for ALS with EU backing.' The average for diagnosis of ALS is about 55 years, although Stephen Hawking was only 23 when he was diagnosed with an extremely rare variant of the disease in 1965. Initial symptoms include slurred speech and muscle weakness as the body's ability to do everyday things such as walk, carry objects, eat and drink is gradually impaired. ALS rarely affects patients' mental abilities, and so sufferers have to deal with the frustrations of a body that cannot do what they want it to do, while their mind is still active. Eventually even breathing becomes impossible without a ventilator. Most sufferers of ALS die within 3 to 5 years of diagnosis, usually from respiratory failure, although about 10% survive about 10 years after diagnosis.