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The ALS Association Contributes $2.5 Million to Genomics Consortium to Further “Big Data” Approach to Finding Causes of ALS

October 2, 2014

In a news release today, The ALS Association announced its financial commitment of $2.5 million to support the New York Genome Center’s Consortium for Genomics of Neurodegenerative Disease (NYGC CGND). The ALS Association’s funds will match a $2.5 million gift from The Tow Foundation in support of this initiative.

The project is made possible by the unprecedented outpouring of support from the Ice Bucket Challenge and is one of four major new initiatives by The Association announced today. 

The New York Genome Center, a state-of-the-art consortium, possesses the capability of generating and analyzing thousands of ALS patient DNA sequences. NYGC brings a wealth of knowledge combining the latest technology with esteemed Institutional Founding Members, Associate Members, a Founding Technology Member and internal faculty with joint appointments at the member institutions. The mission of the NYGC-CGND is to harness state-of-the-art genetic, genomic and bioinformatics tools to gain insights into motor neuron disease mechanisms and to use this knowledge to identify new diagnostic and therapeutic approaches to these devastating diseases. Funding by The ALS Association will further the work of the Center as it combines the expertise of the scientists at the NYGC founding institutions as well as scientists at Harvard/MGH, and the University of Pennsylvania Medical School, dedicated to discovering the genetic underpinnings of ALS. The Consortium will use its state-of-the-art whole-genome sequencing facility to discover new genomic contributors to ALS, discoveries that can then serve as the starting point for development of novel therapies.

As part of its mission to bring this type of “big data” approach to ALS discovery, the Center will serve as a repository for all published and unpublished DNA and RNA sequencing data that pertains to ALS and provide tools to the larger ALS community to analyze, curate, and query the data.

Investigators: Robert B. Darnell, M.D., Ph.D.; Hemali Phatnani, Ph.D.; Tom Maniatis, Ph.D.; Marc Tessier-Lavigne, Ph.D.; Merit Cudkowicz, M.D., MSc; Robert J. Brown, Jr. M.D., D.Phil.; Virginia Lee, Ph.D.; John Q. Trojanowski, M.D., Ph.D.; Alex Sherman; James Berry M.D.; Neil Shneider, M.D., Ph.D.; David Goldstein, Ph.D.; and Tom Jessell, Ph.D.

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.

About The Tow Foundation
The Tow Foundation, established in 1988 by Leonard and Claire Tow, funds projects and collaborative ventures in fields where there are opportunities for breakthroughs, reform and benefits for underserved populations. Investments focus on the support of innovative programs in the areas of juvenile justice reform, groundbreaking medical research, cultural institutions, and higher education. For more information, visit

About the New York Genome Center
The New York Genome Center (NYGC) is an independent, nonprofit at the forefront of transforming biomedical research and clinical care with the mission of saving lives. As a consortium of renowned academic, medical and industry leaders across the globe, NYGC focuses on translating genomic research into clinical solutions for serious disease. Our member organizations and partners are united in this unprecedented collaboration of technology, science, and medicine. We harness the power of innovation and discoveries to improve people’s lives ethically, equitably, and urgently. Member institutions include: Albert Einstein College of Medicine, American Museum of Natural History, Cold Spring Harbor Laboratory, Columbia University, Cornell University/Weill Cornell Medical College, Hospital for Special Surgery, The Jackson Laboratory, Memorial Sloan Kettering Cancer Center, Icahn School of Medicine at Mount Sinai, New York- Presbyterian Hospital, The New York Stem Cell Foundation, New York University, North Shore-LIJ, The Rockefeller University, Roswell Park Cancer Institute, Stony Brook University and IBM. For more information, visit:




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