ALS Research Breakthrough Funded by the Ice Bucket Challenge


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UMASS MEDICAL SCHOOL— In what has become the single largest DNA research project worldwide, money from the ALS Ice Bucket Challenge is being used to discover the genetic cause of ALS.

Using less than 0.5% of the money raised from the challenge ($1 million out of $220 million), “Project MinE” is currently sequencing the genomes of 15,000 people with the disease and 7,500 control subjects. When sequencing is complete, the two sets of data will be compared in order to identify which genes are associated with ALS.

So far so good: the project has already found that variants in the gene NEK1 are present in 3 percent of all North American and European ALS cases, both sporadic and familial (inherited). This discovery will narrow the focus of researchers aiming for a cure.

The project is bringing together over 80 researchers from 11 countries who believe that the first steps to a cure for ALS is to work together. Watch these really smart people talk about how they want to defeat a deadly disease with research funded by public donations.

“The problem with this disease is we don’t know what the target is. We don’t know what we’re shooting at. We need targets. And these targets are going to come from genetics.”

-Professor Jonathan Glass, Emory ALS Center, USA

Basically, this is a massive gathering of genetic data. The data will be used in statistical analysis to determine which genes cause ALS. The larger the sample size, the more accurate the findings will be. 22,500 is one hell of a sample. Let’s cure ALS.


ALS is a progressively degenerative neurological disease that eliminates brain communication with muscles through the degeneration of motor neurons, causing the brain to lose the ability to initiate and control muscle movement. Those with ALS lose the ability to speak, eat, move, and breathe. More than 200,000 people worldwide are living with ALS, which means someone is diagnosed with ALS every 90 minutes. Read about ALS here.





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