ALS, or motor neuron disease, is more common than many might think. It causes death to about 2 people out of a thousand, and it kills every year about 130-140 people in Finland – more deaths are caused by it than e.g. by drowning, and more than half as many as by traffic accidents. Most commonly the disease hits people at working age (from 30 – 70 years), and usually leads to death in app. three years. So far, we don't know any way how to prevent ALS, e.g. by choices in lifestyle.
The mechanisms of ALS have been unknown for a long time, and there has been no systematic collection of background or clinical information on the patients. It is often ignored that there may be several forms of ALS that differ from each other. Another obstacle for research has been the impossibility to take samples from living people. By examining the nerves of deceased people with ALS, numerous anomalies have been found, but it is impossible to say which of them have been causes or consequences. After the discovery in 1993 of mutation in SOD1 gene it has possible to model ALS with mice, but this may on the other hand have distorted research by a too strong predominance in research of this rare form of ALS (only 2 % of cases) caused by SOD1 mutation, at the expense of other forms.
In the past few years there have been several breakthroughs in research due to which research of ALS and the development of its possible treatment have better tools at hand than ever before. New DNA sequencing methods have made it possible to chart the entire human genome, which has led to the discovery of numerous new genes behind ALS. New stem cell tehcniques make it possible to grow sick nerve cells from skin samples of ALS patients, which allows to follow the progress of the disease in living nerve and glial cells. This also allows to test vast numbers of potential pharmaceutical molecules.
What has not changed is the slowness and high expenses of medical development. While the average life expectancy of a patient is three years, it takes at least twice as long for a new drug to make its way from the lab to the markets. Due to the high expenses of the process, the development of drugs against ALS possesses a high – often too high – economic risk for private pharmaceutical companies to become interested.
The Finnish Association for Supporting ALS Research aims to promote, to the extent possible, the access of Finnish ALS patients to effective treatment. This is done by two main avenues: by supporting ALS research in Finland by identifying new potentials for research and by facilitating research coordination, as well as by facilitating access of Finnish ALS patients to international medical trials. In addition, the Association maintains an internet-based discussion forum as a means of mutual support for ALS patients and their near ones.