2014 FACT SHEET

Overview: The New York Genome Center (NYGC) is 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 are united in this unprecedented collaboration of technology, science, and medicine.

Our Vision: To save lives by creating an unprecedented collaboration of technology, science and medicine.

Our Mission: We implement advanced genomic research and integrate our findings with world-class technologies and physician-scientists in order to help solve diseases. We harness the diversity of New York’s institutions and people to drive scientific discoveries that will vastly improve clinical care – ethically, equitably and urgently. We advocate and educate, sharing our findings with the global scientific, medical and thought leadership communities to broaden the reach of the New York Genome Center to help patients in every corner of the world. We create synergies through collaboration to continually innovate and advance our vision.

Our Values: • We Are Patient Driven • We “Break the Mold” Through Innovation • We Are Focused on the Greater Good • We Create Synergies Through Collaboration • We Translate Research Urgently to Help People

Genomics: NYGC’s Integrated include experimental design assistance, sample quality control processes, library preparation, sequencing, extensive data quality control, , and data storage.

101 Avenue of the Americas 7th Floor | New York, NY 10013 | www.nygenome.org | 888.415.NYGC (6942)

Clinical Initiatives:

Glioblastoma Outcomes Trial: Glioblastoma (GBM) is a complex and confounding disease that works quickly and whose prognosis has not seen much improvement in 30 years; patients with aggressive glioblastoma, and who respond to treatment, have a median survival rate of about 14 months. With the technologies and analyses that are available today through genomics – including IBM’s Watson – there is new promise. The GBM study aims to develop clinically actionable applications that are scalable and can be offered to current GBM patients. The GBM consortium includes 27 physicians and scientists, from neurosurgeons to biostatisticians to bioethicists, across nine different institutions and NYGC: The , Memorial Sloan-Kettering, Weill Cornell, North Shore-LIJ, NYU Langone, Columbia, Albert Einstein, Montefiore, and Roswell Park.

Auto-Immune Disease Project: Discovering the Antecedents of a Rheumatoid Arthritis Flare: This study is designed to understand how and why flares, or acute symptomatic episodes, occur in patients of debilitating auto-immune diseases. The project is enrolling patients with Rheumatoid Arthritis, but the protocol can be extended to many other auto-immune diseases including Multiple Sclerosis, Crohn’s and Lupus. By tracking genetic expression changes (through RNA sequencing) before, during, and after a flare, and comparing these changes to patients’ baseline expression levels, we can potentially improve patients’ lives by developing new ways to manage disease prior to symptomatic episodes – resulting in a proactive, rather than a reactive, approach to treatment.

Pediatric Leukemia and Neuroblastoma: The Sohn Conference Foundation has approved a two-year grant to a research group including NYGC and five IFMs to study the causes of two devastating childhood cancers: pediatric neuroblastoma and leukemia. NYGC will act as the grant coordinator amongst the institutions, ensuring that all funding milestones and reporting requirements are achieved on time and as required.

Patient-Centered Outcomes Research Institute (PCORI): NYGC was awarded, along with a consortium of 10 medical institutions, a PCORI contract. The Clinical Data Research Network (NYC-CDRN) will bring together a total of 22 organizations across seven systems in the nation's most populous and diverse region. These organizations are already pursuing data sharing and patient- centered clinical research, individually and collaboratively. The NYC-CDRN will be a network building on the strengths of and support from each participating organization, sharing capabilities across organizations, and facilitating coordinated and patient-centered clinical research within and across CDRNs. The NYC-CDRN will include complete, comprehensive, and longitudinal data for at least 2.5 million patients, and potentially as many as 6 million patients.

Center for Genomics of Neurodegenerative Disease (CGND): The CGND is dedicated to applying state-of-the-art genetics, genomics and bioinformatics to the study of neurodegenerative diseases such as ALS and Alzheimer’s, with an emphasis on identifying genetic mutations that can cause disease. The CGND’s partners include the University of Pennsylvania Medical School, the Northeast ALS Consortium, Mass General Hospital/Harvard, UMass Medical School and our own IFMs.

Leadership & Management: Robert Darnell, MD, PhD – President, CEO & Scientific Director Carol Ashe – Chief Business Officer Sarah Lesser Avins – Vice President External Affairs, Chief Development Officer Samuel Servello – Deputy General Counsel Matthew J. Pelo – Chief of Staff and Vice President, Financial Strategy Toby Bloom, PhD – Deputy Scientific Director, Informatics Andrea Armstrong – Vice President, Human Resources and Administration Christopher C. Duignan – Vice President, Finance Harold Swerdlow, PhD – Vice President, Sequencing

Board of Directors: Russell L. Carson – Co-Chair, Welsh, Carson, Anderson & Stowe Ivan Seidenberg – Co-Chair Herb Pardes, MD – Vice Chair, NewYork-Presbyterian Hospital Robert Darnell, MD, PhD – President, CEO & Scientific Director, NYGC William E. Ford – CEO, General Atlantic Dafna Bar-Sagi, PhD – Senior Vice President and Vice Dean for Science, NYU Dennis S. Charney, MD – Dean of the School and EVP for Academic Affairs, Icahn School of Medicine at Mount Sinai Nicholas Donofrio – IBM Fellow Emeritus and EVP Innovation & Technology Anthony B. Evnin, PhD – Partner, Venrock Laurie Glimcher, MD – Dean, Weill Cornell Medical College Lee Goldman, MD, MPH – Dean of the Faculties of Health Sciences and Medicine, John Havens – Partner and Non-Executive Chairman, Napier Park Global Capital Charles R. Kaye – Co-Chief Executive Officer, Warburg Pincus Edison Liu, MD – President & CEO, The Jackson Laboratory Tom Maniatis, PhD – Scientific and Clinical Steering Committee Chair, Columbia University Arthur J. Samberg – Manager of Hawkes Financial LLC Jim Simons, PhD – President, Simons Foundation Steven Singer – Partner, WilmerHale Allen M. Spiegel, MD – Albert Einstein College of Medicine and Yeshiva University Samuel L. Stanley Jr., MD – President, Bruce Stillman, PhD – President, Cold Spring Harbor Laboratory Marc Tessier-Lavigne, PhD – President, The Rockefeller University Craig B. Thompson, MD – President and Chief Executive Officer, Memorial Sloan-Kettering Cancer Center Kevin J. Tracey, MD – President and CEO, The Feinstein Institute of Medical Research

Faculty: Robert Darnell, MD, PhD – President, CEO & Scientific Director Tuuli Lappalainen, PhD – Junior Investigator and Core Member Joe Pickrell, PhD – Junior Investigator and Core Member Hemali Phatnani, PhD – Co-Director, Center for Genomics of Neurodegenerative Disease Joe Gleeson, MD, PhD – Core Member and Director of Mendelian Genetics

Institutional Founding Members: Albert Einstein College of Medicine of Yeshiva University Cold Spring Harbor Laboratory Columbia University in the City of New York Icahn School of Medicine at Mount Sinai Memorial Sloan-Kettering Cancer Center NewYork-Presbyterian North Shore LIJ NYU School of Medicine Stony Brook University The Jackson Laboratory The Rockefeller University Weill Cornell Medical College

Founding Technology Member: IBM

Associate Members: American Museum of Natural History Hospital for Special Surgery Roswell Park Cancer Institute The New York Stem Cell Foundation

NYGC Milestones: May 2014 – NYGC receives CLIA certification. May 2014 - NYGC and The Sohn Conference Foundation announced the launch of The Sohn Collaborative for Pediatric Cancer Research, a multi-institutional effort with the goal of fighting two devastating childhood cancers: pediatric leukemia and neuroblastoma. April 2014 - Governor Andrew M. Cuomo and the New York State Legislature approved $105 million in funding to advance genomic medicine through a partnership between the University at Buffalo and NYGC. As part of this initiative, NYGC will receive $55.75 million from the State and has committed to match it dollar-for-dollar with funds raised separately. March 2014 - NYGC announces collaboration with Watson to advance genomic medicine. IBM joins NYGC as Founding Technology Member. February 2014 - Fibrolamellar discovery / joint study published in Science. January 2014 - NYGC purchases Illumina HiSeq X Ten sequencing system. December 2013 - First faculty member joins NYGC. September 2013 - New York Genome Center opens.

Boilerplate:

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, NewYork-Presbyterian Hospital, The New York Stem Cell Foundation, , North Shore-LIJ, The Rockefeller University, Roswell Park Cancer Institute, Stony Brook University and IBM. For more information, visit: www.nygenome.org.

Website: www.nygenome.org

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Media Contacts: Sara Ghazaii 646-977-7070 [email protected]

Eva Chodosh 646-977-7413 [email protected]