The ALS Association Funds Project MinE to Support Sequencing of ALS Genomes

In a news release today, The ALS Association announced its financial commitment of $1 million to Project MinE, an international effort to sequence the genomes of at least 15,000 people with ALS. The funding will be used to bring this effort to the United States, under the direction of researchers at University of Massachusetts Medical School in Worcester, Mass., and Emory University in Atlanta, Ga.

Funding for the project is made possible by the unprecedented outpouring of support from this summer’s Ice Bucket Challenge. The expansion of Project MinE is one of four major initiatives by The Association as a direct result of that support.

Project MinE is based on the fact that genes are thought to contribute, directly or indirectly, to most cases of ALS. Several important genes have been identified, but researchers suspect that many more, much rarer, variants that affect the risk for ALS are awaiting discovery. Conventional gene discovery techniques are limited to genes that can cause ALS all by themselves and display a familial inheritance pattern. Rare variants that contribute to ALS risk require new gene discovery techniques. Sequencing the entire genome of many people with ALS will allow these rare risk variants to be found much more readily. Once these are in hand, they can become the basis for new understandings of the disease and new therapeutic strategies.

Recognizing the key role that large-scale whole-genome sequencing has to play in finding new treatments for ALS, The ALS Association will fund Project MinE in the United States with the goal of eventually sequencing the genomes of 1,000 Americans with ALS. The project will be under the direction of John Landers, Ph.D., at UMass Medical School, and Jonathan Glass, M.D., at Emory University.

Sequenced genomes will become part of an international ALS genome database and made available to ALS researchers for investigations into the causes of ALS. In addition, Project MinE researchers will collect tissue samples that can be used for development of stem cell lines, a key tool in ALS research.

Cooperative synergies among the four new initiatives announced today (ALS ACT, New York Genome Centre, The Neuro Collaborative, and Project MinE) will increase the quantity and most importantly the value of data available for ALS research.

The ALS Association’s Board of Trustees will be meeting in mid-October to discuss and vote on additional funding decisions related to the use of Ice Bucket Challenge donations.