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New Genome Research Program Launched

Greater New York Chapter

Serving people living with ALS in: Greater New York

The support that The ALS Association Greater New York Chapter received as a result of the Ice Bucket Challenge has allowed it to enhance its services in three areas:  research, multidisciplinary clinical care, and support services for patients and families.

First, the chapter partnered with the Tow Foundation to provide significant support to establish an ALS Program at the New York Genome Center’s Consortium for Genomics of Neurodegenerative Disease. The Consortium will use the NY Genome Center’s state-of-the-art whole-genome sequencing facility to discover new genomic contributors to ALS. These discoveries that can then serve as the starting point for development of novel therapies.  

The chapter also established a new partnership with Columbia University Medical Center to sponsor an ALS Association multidisciplinary clinic.  This will be the chapter’s fifth treatment program. The goal is to continue to provide state-of-the-art resources and clinical expertise that make it easier for patients to cope effectively with ALS, improve their quality of life, and participate in ALS research to find a treatment and cure. 

Additionally, the chapter has been able to expand its Regional Care Team by adding a new social worker for the New York City region, and enhance its equipment loan program with the purchase of more than 100 pieces of equipment, including wheelchairs and augmentative communication devices.

Members of the Board and staff of The ALS Association Greater New York Chapter at the New York Genome Center for a site visit given by its President and CEO Dr. Robert Darnell and co-director of its Center for Genomics of Neurodegenerative Disease Dr. Hemali Phatnani. Also present were ALSA Chief Scientist Dr. Lucie Bruijn and ALS Ice Bucket Co-Founder Pat Quinn and his brother Dan.

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