Dutch News

18 April 2014

Two Dutch businessmen that lately were diagnosed with ALS, a very deadly muscle disease that slowly destroys nerve cells through which muscles melt away, are collecting millions to finance vital genetic research. People who are diagnosed with ALS have around three years to live. It is the first time that the genetic variations of a disease have been mapped at such a large scale. 

ALS (amyotrofische laterale sclerose) is a disease with a genetic basis, but until now it is unknown which defects in which genes are causing the disease. The successful business men met each other via a business partner and decided to actively find a solution for this deadly muscle disease without a cure. And there was not much time left.


In the lab of a Dutch international neurology specialist the two businessmen found out that their assumption that nobody knew what to do against ALS and what to research was nonsense. To get closer to a form of treatment or even a cure the defects in the genes need to be listed, so it can become clear how the nerve cells get disorganised. For this research around 15.000 genetic profiles of ALS patients and 7.400 profiles of a control group without the disease are needed. Costs: €. 40 million, far too expensive for the neurology specialist, but not for the tow businessmen.


Since the summer of 2012 the Dutch ALS-research program is taking place. Whenever there is new funding more blood samples are sent to the United States for analyses. According to the businessmen international cooperation is needed to make the project successful. Other ALS patients should join in. The international cooperation is also important so there will be blood samples from different parts of the world, since the ALS gene defects differ quite a lot per region.


Sadly enough the international cooperation of ALS specialists is too fragmented, that’s why it is up to two sick business men to run the research project. They already have quite a few fellow patients, ALS centres and specialist on board from the UK, Belgium, Ireland, Sweden, Switzerland, Italy, Spain and Australia. It mostly sports people that also have ALS that do the promotion for the project.


The first results are expected in a year. Lately they get overviews of DNA structures from the US lab, and the resemblances and the differences need to be found and listed. This will generate data that are unique in the world that will be vital to find a treatment and possibly a cure for the mysterious but deadly muscle disease.  


The Dutch business men started the project to try to save their lives, but soon it became a project with a much wider goal. Not even alone for ALS patients, but for the future of commercialization of fundamental research in diseases with a genetic component like cancer, MS and diabetes.


Source: De Volkskrant






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