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Project MinE

Project MinE is an international, large-scale research initiative devoted to discovering genetic causes of ALS and to ultimately find a cure. Project MinE is based on the fact that genes are thought to contribute, directly or indirectly, to many cases of ALS. Many ALS genes have been identified, but researchers suspect that many more, much rarer variants that affect the risk of ALS are awaiting discovery.

Once Project MinE is concluded, new ALS genes, including rare genetic variants will be identified. Researchers can then zoom into these genes to better understand the disease pathways causing ALS and then ultimately understand whether those pathways can be targeted for new ALS therapies.

The ALS Association Commitment

The Association committed an initial $1 million in partnership with the Greater New York and Georgia Chapters, establishing the U.S. arm of Project MinE. Funding was announced in October 2014.


The goal is to identify genes associated with ALS by performing whole genome sequencing (reading DNA) of at least 15,000 ALS people with ALS + 7,500 healthy people worldwide resulting in an open-source ALS genome database, in conjunction with the collection of skin samples to make ALS patient induced pluripotent stem cell lines (iPSCs).

How the Project MinE advances the search for a treatment for ALS

Key Players

Bernard Muller

Entrepreneurs and people living with ALS, Bernard Muller and Robbert Jan Stuit, along with Leonard van den Berg, M.D., Ph.D., Director of Netherlands ALS Center, developed the Project MinE concept. In 2011, Bernard and met Robbert Jan Stuit and decided that together they could change the ALS field. After a tour of the Research ALS Center in the Netherlands, they found that 5,000 DNA samples collected from people living with ALS were stored in a freezer and were not being used because it was too expensive to conduct research experiments. That was the beginning of Project MinE.

Jonathan Glass, M.D. and John Landers, Ph.D.

Now 16 countries are participating in Project MinE – a global collaborative effort.

The ALS Association funding supports the U.S. arm of this initiative led by Jonathan Glass, M.D. at Emory University in Atlanta and John Landers, Ph.D., University of Massachusetts Medical School in Worcester, Mass.


It costs approximately $2,000 to sequence the whole genome of one person. As of August 1, 2016, Project MinE has achieved 35 percent of its total goal equaling 7,835 DNA profiles collected out of the total 22,500.

The U.S. arm of Project MinE has raised $1,500,395, which is 58 percent of its overall goal of $2,600,000. So far, 577 DNA profiles have been collected out of 1,000 goal.

Already from the data collected by Project MinE, researchers have discovered two new genes – NEK1 and C21orf2 – that were published in back-to-back articles in Nature Genetics. Two other genes, MOBP and SCFD1, were also identified as new associated risk genes that still require further validation. These gene discoveries will lead to the identification of novel ALS disease pathways that will be further explored as possible therapeutic targets.

Researchers funded by The Association are currently exploring how these newly identified genes contribute to ALS disease, by making mouse models that will be shared with the entire ALS community.