Lou Gehrig's disease: a national campaign and an institute to accelerate research
Alongside the campaign, the Charcot Institute, the first French center dedicated to research on ALS and motor neuron disease, was created. Because raising funds is not enough. "The Charcot Institute is the response to a finding: research was too dispersed. We are now uniting researchers, clinicians, and patients in a single dynamic," explain Professor Luc Dupuis and Dr. Édor Kabashi, co-founders of the institute and researchers at Inserm.
Contrary to popular belief, death, occurring on average three years after diagnosis, may no longer be inevitable. "Researchers in France and internationally are already working on promising therapeutic avenues, a scientific breakthrough that must be urgently supported to save lives," says ARSLA. But there is a shortage of €20 million to carry out the most promising research and turn it into concrete treatments for patients.
The progressive death of motor neurons
ALS is caused by the progressive death of motor neurons, the nerve cells that direct and control voluntary muscles. It results in progressive paralysis of these muscles. The disease generally appears between the ages of 50 and 70, often earlier when it runs in families (10% of cases).
Contractures and stiffness of muscles and joints appear locally and then spread to other muscles. Muscle wasting and coordination problems eventually prevent walking, gripping, and difficulty swallowing. Then the respiratory muscles are affected, which precipitates the worsening of the disease.
Nearly 8,000 people in France suffer from Lou Gehrig's disease. Every day, five new cases are diagnosed, and five patients die from it. Most often, respiratory muscle damage causes death.
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