Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
|
Total |
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Calendar year (or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 61,060,764 | 94,901,046 | 70,723,214 | 115,038,771 | 32,878,926 | 374,602,721 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.... | 0 | |||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | 0 | |||||
| 4 | Total. Add lines 1 through 3 | 61,060,764 | 94,901,046 | 70,723,214 | 115,038,771 | 32,878,926 | 374,602,721 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f).. | 160,330,929 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 214,271,792 | |||||
Calendar year
(or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 61,060,764 | 94,901,046 | 70,723,214 | 115,038,771 | 32,878,926 | 374,602,721 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 268,801 | 302,728 | 378,725 | 2,090,669 | 3,205,975 | 6,246,898 |
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | 116,870 | 58,024 | 95,299 | 104,653 | 38,049 | 412,895 |
| 11 | Total support. Add lines 7 through 10 | 381,262,514 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
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| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 1-1/2% of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by .035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | ||
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
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| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | ||
| 4 Amounts paid to acquire exempt-use assets | ||
| 5 Qualified set-aside amounts (prior IRS approval required) | ||
| 6 Other distributions (describe in Part VI). See instructions | ||
| 7Total annual distributions. Add lines 1 through 6. | ||
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
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| 9 Distributable amount for 2019 from Section C, line 6 | ||
| 10 Line 8 amount divided by Line 9 amount | ||
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2019 |
(iii) Distributable Amount for 2019 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2019 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2019 (reasonable cause required-- explain in Part VI). See instructions. |
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| 3 Excess distributions carryover, if any, to 2019: | ||||
| a From 2014....... | ||||
| b From 2015....... | ||||
| c From 2016....... | ||||
| d From 2017....... | ||||
| e From 2018....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2019 distributable amount | ||||
|
i
Carryover from 2014 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from 3f. | ||||
| 4Distributions for 2019 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2019 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from 4. | ||||
|
5
Remaining underdistributions for years prior to 2019, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
6
Remaining underdistributions for 2019. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
7 Excess distributions carryover to 2020. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2015..... | ||||
| b Excess from 2016..... | ||||
| c Excess from 2017..... | ||||
| d Excess from 2018..... | ||||
| e Excess from 2019..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| THE ORGANIZATIONS MISSION | FORM 990, PART I, LINE 1 & PART III, LINE 1: NYGC IS ORGANIZED AND OPERATED AS AN INDEPENDENT, NON-PROFIT CORPORATION, DEDICATED TO STATE-OF-THE-ART, WORLD-CLASS GENOMIC RESEARCH, SEQUENCING AND BIOINFORMATICS, WHOSE MEMBERS INCLUDE LEADING ACADEMIC, MEDICAL AND RESEARCH INSTITUTIONS. IT CREATES AND USES ADVANCED GENOMICS TO UNDERSTAND THE GENETIC BASIS OF DISEASE. NYGC HAS THE FOLLOWING KEY OBJECTIVES: (I) FOSTERING INTELLECTUALLY VIBRANT RESEARCH COLLABORATIONS IN THE ACADEMIC AND SCIENTIFIC COMMUNITY IN NEW YORK CITY, ACROSS THE COUNTRY AND AROUND THE WORLD; (II) RECRUITING AND RETAINING WORLD-CLASS SCIENTIFIC TALENT TO LEAD THE SCIENTIFIC DEVELOPMENT OF THE ORGANIZATION; (III) SUPPORTING RESEARCH CONDUCTED BY THE INSTITUTIONAL FOUNDING MEMBERS, OTHER ACADEMIC, RESEARCH AND MEDICAL INSTITUTIONS, AND THE BIOTECHNOLOGY/PHARMACEUTICAL INDUSTRY TO ADVANCE NYGCS SCIENTIFIC PROGRAM AND GENOMIC RESEARCH; (IV) DEVELOPING INNOVATIVE EXPERIMENTAL AND COMPUTATIONAL GENOMIC METHODS BASED UPON THE RESEARCH AND SEQUENCING ACTIVITIES CONDUCTED AT THE ORGANIZATION'S FACILITY, FOR THE BROADER BENEFIT OF THE RESEARCH COMMUNITY; (V) ADVANCING RESEARCH TO SUPPORT THE DEVELOPMENT OF NEW TREATMENTS, THERAPIES AND THERAPEUTICS TO TREAT HUMAN DISEASE; (VI) PROVIDING TRAINING TO THE ACADEMIC, RESEARCH AND TECHNOLOGY COMMUNITIES; AND (VII) CONDUCTING ACTIVITIES ANCILLARY TO THESE OBJECTIVES. FORM 990, PART III, LINE 4A (CONTINUED) IN 2019, NYGC SEQUENCED OVER 12,000 WHOLE GENOME SAMPLES, COMPLETED 490 PROJECTS, AND COLLABORATED WITH 131 INVESTIGATORS FROM 92 INSTITUTIONS WORLDWIDE. PROGRAM SERVICE ACCOMPLISHMENTS FORM 990, PART III, LINE 4A & LINE 4B: NYGC IS AN INDEPENDENT, NONPROFIT ACADEMIC RESEARCH INSTITUTION WITH THE MISSION OF ADVANCING CLINICAL CARE THROUGH TRANSFORMATIVE GENOMIC RESEARCH. NYGC'S WORK BUILDS ON THE EXPERTISE AND EXPERIENCE THAT NYGC HAS DEVELOPED SINCE ITS FOUNDING IN 2010 AND AUGMENTS RESEARCH BEING CONDUCTED BY NYGC MEMBER INSTITUTIONS. COLLABORATING WITH PREMIER ACADEMIC, MEDICAL AND INDUSTRY LEADERS ACROSS THE GLOBE, NYGC IS CONDUCTING DISEASE-BASED GENOMIC RESEARCH IN AREAS WHERE IT HAS DEVELOPED A STRONG AND SUCCESSFUL TRACK RECORD, PARTICULARLY IN NEURODEGENERATIVE DISEASES SUCH AS ALS, NEUROPSYCHIATRIC DISEASES, PRINCIPALLY IN AUTISM, AND CANCER, FOCUSING ON UNDERSERVED POPULATIONS AND RARE CANCERS, AMONG OTHERS. IN 2020, NYGC ALSO EXPANDED ITS EXPERTISE TO COVID-19 RESEARCH. THROUGH INNOVATIVE RESEARCH AND GENOMIC DISCOVERY, NYGC'S GOAL IS TO ADVANCE HUMAN HEALTH. NYGC, ITS MEMBER INSTITUTIONS AND PARTNERS ARE UNITED IN THIS UNPRECEDENTED COLLABORATION OF TECHNOLOGY, SCIENCE AND MEDICINE, DESIGNED TO HARNESS THE POWER OF INNOVATION AND GENOMICS TO MAKE GROUNDBREAKING NEW DISCOVERIES IN THESE DISEASES. THEIR SHARED OBJECTIVE IS THE ACCELERATION OF MEDICAL GENOMICS TO BENEFIT PATIENTS AROUND THE WORLD. NYGC'S INNOVATION, RESEARCH AND QUALITY MAKE IT A UNIQUE AND STRONG COLLABORATIVE PARTNER IN GENOMICS. NYGCS SCIENTIFIC MISSION BUILDS ON THE COLLABORATIVE RESEARCH PROJECTS AMONG NYGC FACULTY MEMBERS AND STAFF SCIENTISTS WITH SCIENTISTS AND CLINICIANS FROM MEMBER INSTITUTIONS, AN AFFILIATE MEMBERSHIP PROGRAM, DISEASE- AND TECHNOLOGY-CENTERED WORKING GROUPS AND INDUSTRY PARTNERS. IN 2019, NYGC CONTINUED TO EXPAND ITS AFFILIATE MEMBERSHIP PROGRAM, WHICH NOW TOTALS 80 MEMBERS, HAILING FROM 14 ACADEMIC INSTITUTIONS ACROSS THE COUNTRY. RESEARCH AND FACULTY --------------------- SINCE ITS INCEPTION, NYGC HAS ATTRACTED WORLD-CLASS SCIENTISTS WHOSE GENOMIC EXPERTISE - INCLUDING SINGLE CELL GENOMICS, GENOME ENGINEERING, POPULATION, FUNCTIONAL AND EVOLUTIONARY GENOMICS, TECHNOLOGY AND METHODS DEVELOPMENT, STATISTICS, COMPUTATIONAL BIOLOGY AND BIOENGINEERING - BRING A MULTIDISCIPLINARY AND IN-DEPTH APPROACH TO THE EVOLVING FIELD OF GENOMICS. NYGC'S FACULTY SUPPORT NYGC'S SCIENTIFIC VISION THROUGH THE ADVANCEMENT OF TECHNOLOGY DEVELOPMENT AND GENOMIC MEDICINE. FACULTY MEMBERS HAVE JOINT APPOINTMENTS AT THE NYGC'S INSTITUTIONAL FOUNDING MEMBERS TO PROMOTE COLLABORATION, STRENGTHEN RESEARCH CAPABILITIES, ADVANCE ACADEMIC LEADERSHIP, AND ENHANCE OUR ABILITY TO UNDERSTAND AND HELP TREAT HUMAN DISEASES. IN 2019, NYGC MANAGED 56 GRANTS FROM THE NATIONAL INSTITUTES OF HEALTH (NIH). NYGC'S RESEARCHERS ARE WORKING WITH ITS MEMBER INSTITUTIONS AND COLLABORATIVE PARTNERS TO ADDRESS THE FUNDAMENTAL CHALLENGE IN PRECISION MEDICINE: UNDERSTANDING THE RELATIONSHIP BETWEEN DNA SEQUENCE VARIATION AND MECHANISMS OF HUMAN DISEASE, RANGING FROM CANCER TO AUTISM TO NEURODEGENERATIVE DISEASE. NYGC RESEARCHERS PUBLISHED MORE THAN 50 STUDIES IN LEADING SCIENTIFIC JOURNALS IN 2019, FUELING MOMENTUM FOR IMPORTANT COLLABORATIVE WORK. THEY COMPLETED 490 PROJECTS, AND COLLABORATED WITH 131 INVESTIGATORS FROM 92 INSTITUTIONS WORLDWIDE. NYGC FACULTY MEMBERS FOCUS THEIR RESEARCH ON THE DEVELOPMENT AND APPLICATION OF ADVANCED GENOMICS TO UNDERSTAND DISEASE. |
| PROGRAM SERVICE ACCOMPLISHMENTS | ACCOMPLISHMENTS IN 2019 INCLUDE: NEURODEGENERATIVE DISEASE ------------------------- GROUNDBREAKING ALS GENE EXPRESSION ATLAS REVEALED NEW INSIGHTS INTO DISEASE PROGRESSION: RESEARCHERS AT THE NYGC LED THE GLOBAL COLLABORATION THAT DEVELOPED A MULTIDIMENSIONAL GENE EXPRESSION ATLAS THAT OFFERS A PREVIOUSLY UNAVAILABLE VIEW OF DISEASE PROGRESSION IN ALS. UTILIZING SPATIAL TRANSCRIPTOMICS TECHNOLOGY, COMBINED WITH A NOVEL COMPUTATIONAL APPROACH, THE TEAM IDENTIFIED EARLY CHANGES NOT OBSERVABLE USING TRADITIONAL SEQUENCING METHODS. THEIR FINDINGS, PUBLISHED IN SCIENCE IN APRIL 2019, REVEALED NEW INSIGHTS INTO DISEASE SIGNALING PATHWAYS, SUGGESTED NEW TARGET OPPORTUNITIES FOR DESIGNING THERAPEUTICS AND TREATMENTS, AND WILL PROVIDE A FRAMEWORK FOR FURTHER MAPPING AND BETTER UNDERSTANDING OF THE DISEASE MECHANISMS OF OTHER NEURODEGENERATIVE DISEASES WITH COMMON PATHWAYS. HEMALI PHATNANI, PHD, DIRECTOR OF NYGC'S CENTER FOR GENOMICS OF NEURODEGENERATIVE DISEASE (CGND), IS SENIOR AUTHOR OF THE STUDY AND SILAS MANIATIS, PHD, STAFF SCIENTIST, IS CO-FIRST AUTHOR. THEIR COLLABORATORS INCLUDED SCIENTISTS FROM THE SIMONS FOUNDATION'S FLATIRON INSTITUTE IN NEW YORK, THE SCILIFELAB AND KTH ROYAL INSTITUTE OF TECHNOLOGY IN SWEDEN, AND NEW YORK UNIVERSITY. NYGC'S CGND'S DEVELOPMENT OF THE ALS CONSORTIUM, A GLOBAL COLLABORATION OF CLINICIANS, SCIENTISTS, GENETICISTS, AND COMPUTATIONAL BIOLOGISTS, HAS RAPIDLY GROWN OVER THE LAST FIVE YEARS TO INCLUDE MORE THAN 30 MEMBER INSTITUTIONS IN COUNTRIES AROUND THE WORLD. THE RESULT IS ALS DATA SHARING ON AN UNPARALLELED AND UNPRECEDENTED SCALE, EMPOWERING AN INTEGRATED WORLDWIDE APPROACH TO WORKING TOWARD NEW TREATMENTS AND EFFECTIVE THERAPIES FOR ALS. IN 2019, THE CGND'S COLLABORATIVE APPROACH CONTRIBUTED TO THESE SIGNIFICANT ADVANCES IN ALS RESEARCH: * A BREAKTHROUGH STUDY LED BY COLD SPRING HARBOR LABORATORY ASSOCIATE PROFESSOR MOLLY GALE HAMMELL, PHD, PUBLISHED IN CELL, REPORTED IN OCTOBER 2019, THAT IDENTIFIED THAT TDP-43 PROTEINS ARE DYSFUNCTIONAL IN ALS, CAUSING DE-SILENCING OF RETROTRANSPOSONS, KNOWNS AS "JUMPING GENES." THE STUDY USED THE NYGC ALS CONSORTIUM COHORT OF ALS PATIENT SAMPLES AS PART OF ITS DATA ANALYSIS. THE SCIENTISTS NOW SEEK TO CONFIRM WHETHER HIGH LEVELS OF THESE GENES MIGHT MIMIC A VIRAL PATHOGEN OR OTHER INFECTION IN THE TISSUES. IF SO, THESE GENES MAY BE DIRECTLY TARGETED WITH ANTIVIRAL AGENTS OR OTHER THERAPIES. DR. PHATNANI AND MEMBERS OF HER LAB ARE AMONG THE STUDY CO-AUTHORS. DR. HAMMELL IS A MEMBER OF THE NYGC'S NEURODEGENERATIVE DISEASE SCIENTIFIC WORKING GROUP. * OTHER RECENT GENETIC ASSOCIATIONS OR MAJOR VALIDATIONS OF ALS GENES USING NYGC ALS CONSORTIUM DATA INCLUDED THE IDENTIFICATION OF PKP4 AND LGALSL IN APRIL 2019 (PUBLISHED IN GENOME RESEARCH) AND KIF5A IN MARCH 2018 (PUBLISHED IN NEURON). * DR. PHATNANI IS ALSO A CO-AUTHOR OF THE MASSACHUSETTS GENERAL HOSPITAL/HARVARD MEDICAL SCHOOL-LED STUDY, PUBLISHED IN NATURE NEUROSCIENCE IN NOVEMBER 2019, THAT IDENTIFIED DNAJC7 AS A NOVEL GENE IMPLICATED IN ALS. NEUROPSYCHIATRIC DISEASE ------------------------ THROUGH A $40 MILLION GRANT AWARD FROM THE NATIONAL HUMAN GENOME RESEARCH INSTITUTE, A DIVISION OF NIH, IN 2015 THE NYGC CREATED A CENTER FOR COMMON DISEASE GENOMICS, WHICH IS ENGAGED IN LARGE-SCALE WHOLE GENOME SEQUENCING STUDIES OF AUTISM AND OTHER COMPLEX DISEASES. NYGC RESEARCHERS ARE INVOLVED IN SFARI (SIMONS FOUNDATION AUTISM RESEARCH INITIATIVE) AND SPARK (SIMONS FOUNDATION POWERING AUTISM RESEARCH FOR KNOWLEDGE) AND LEAD OR CONTRIBUTE TO AN ARRAY OF OTHER COLLABORATIVE NEUROPSYCHIATRIC DISEASE-RELATED GENOMIC STUDIES. KEY MILESTONES IN 2019 INCLUDE: 30,000 WHOLE GENOMES OF AUTISM PATIENTS AND THEIR FAMILIES SEQUENCED: THE SCALE OF THIS DATA SET, WHICH IS BEING SEQUENCED AND ANALYZED THROUGH NYGC'S CENTER FOR COMMON DISEASE GENOMICS, REACHED THIS MILESTONE BY YEAR-END 2019. IT IS ONE OF THE LARGEST DATASETS AVAILABLE FOR RESEARCHERS TO STUDY AND IS HELPING TO UNCOVER NEW INSIGHTS INTO AUTISM. NEW AUTISM RISK GENE VARIANTS IDENTIFIED: IN AUGUST 2019, SPARK RELEASED ITS PILOT STUDY, AN ANALYSIS OF EXOME SEQUENCING OF 457 AUTISM FAMILIES. THE RESEARCH TEAM INCLUDED EVAN EICHLER, PHD, UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE, AND ASSOCIATE MEMBER, NYGC, AND WAS LED BY WENDY CHUNG, MD, PHD, COLUMBIA UNIVERSITY, AND AFFILIATE MEMBER, NYGC. THROUGH THEIR ANALYSIS, THE RESEARCHERS IDENTIFIED 647 RARE VARIANTS THAT WERE PRESENT FOR THE FIRST TIME IN A FAMILY MEMBER, EITHER AS A RESULT OF A MUTATION IN THE EGG OR SPERM OF ONE OF THE PARENTS, OR A VARIANT THAT ARISES IN THE FERTILIZED EGG. THEY ALSO FOUND INDELS, WHICH ARE INSERTIONS OR DELETIONS OF BASES IN THE GENOME, THAT APPEARED AT HIGHER FREQUENCY IN THOSE WITH AUTISM AS COMPARED TO THOSE WITHOUT AUTISM. MANY OF THESE VARIANTS WERE PREVIOUSLY KNOWN TO BE ASSOCIATED WITH AUTISM, WHILE OTHERS EMERGED FOR THE FIRST TIME. THEIR STUDY WAS PUBLISHED IN NPJ GENOMIC MEDICINE. THE NEXT PHASE OF THE SPARK PROJECT WILL LEVERAGE THE WHOLE GENOME SEQUENCING AND ANALYSIS OF SOME 1,600 AUTISM FAMILIES, CONDUCTED BY NYGC RESEARCHERS. REPORTS ON THESE FINDINGS ARE EXPECTED TO BE RELEASED THROUGHOUT 2020. NIH GRANT TO STUDY SCHIZOPHRENIA/BIPOLAR/AUTISM DISEASE RISK: NYGC CORE FACULTY MEMBER TUULI LAPPALAINEN, PHD, WHO HOLDS A JOINT APPOINTMENT AT COLUMBIA UNIVERSITY, RECEIVED RENEWED NIH R01 FUNDING SUPPORT IN AUGUST 2019 FOR A PROJECT TITLED "INTEGRATIVE ANALYSIS OF GENETIC VARIATION AND TRANSCRIPTION FACTOR NETWORKS TO ELUCIDATE MECHANISMS OF MENTAL HEALTH DISORDERS." HER PROJECT, A COLLABORATION WITH COLUMBIA UNIVERSITY COLLEAGUE HARMEN BUSSEMAKER, PHD, WILL DEPLOY NUMEROUS LARGE-SCALE FUNCTIONAL GENOMIC DATA SETS AS WELL AS EXPERIMENTAL APPROACHES TO EXPLORE SCHIZOPHRENIA, BIPOLAR DISEASE AND AUTISM RISK. EXPANDED NEUROPSYCHIATRIC GENOMICS LEADERSHIP: IN FALL 2019, NYGC ANNOUNCED THE APPOINTMENT OF THOMAS LEHNER, PHD, MPH, AS SCIENTIFIC DIRECTOR OF NEUROPSYCHIATRIC DISEASE GENOMICS. DR. LEHNER JOINED NYGC AFTER A DISTINGUISHED 15-YEAR TENURE AT THE NATIONAL INSTITUTE OF MENTAL HEALTH (NIMH), A DIVISION OF NIH, WHERE HE WAS INSTRUMENTAL IN THE CONCEPTION AND DEVELOPMENT OF THE NIMH'S COMPREHENSIVE NEUROPSYCHIATRIC GENOMICS PROGRAM. DR. LEHNER IS DEVELOPING AND SPEARHEADING THE OVERARCHING SCIENTIFIC STRATEGY FOR NYGC'S NEUROPSYCHIATRIC DISEASE GENOMICS RESEARCH. INTERNATIONALLY RENOWNED GENETICIST MARY-CLAIRE KING, PHD, JOINED NYGC'S FACULTY ON A CONSULTING BASIS AS SENIOR ASSOCIATE CORE MEMBER IN NOVEMBER 2019. DR. KING IS THE AMERICAN CANCER SOCIETY PROFESSOR IN THE DEPARTMENTS OF GENOME SCIENCES AND MEDICINE AT THE UNIVERSITY OF WASHINGTON. SHE WAS THE FIRST TO SHOW THAT BREAST AND OVARIAN CANCER IS INHERITED IN SOME FAMILIES AS THE RESULT OF MUTATIONS IN THE GENE THAT SHE NAMED BRCA1, A DISCOVERY THAT HAS TRANSFORMED THE DIAGNOSIS, DRUG DEVELOPMENT AND TREATMENT OF THIS INHERITED FORM OF BREAST CANCER. MORE RECENTLY, DR. KING HAS FOCUSED ON THE GENETICS OF SCHIZOPHRENIA, CONTRIBUTING TO THE UNDERSTANDING OF COMPLEX DISEASE INHERITANCE. SHE WILL SUPPORT NYGC'S EFFORTS TO UNDERSTAND THE GENETIC BASIS OF PSYCHIATRIC DISORDERS. |
| CANCER | ------ GENOMICS-CENTERED INITIATIVES TO ADDRESS CANCER CARE CHALLENGES ARE A KEY FOCUS OF THE GENOME CENTER CANCER GROUP (GCCG), LED BY NOBEL LAUREATE HAROLD VARMUS, MD, SENIOR ASSOCIATE CORE MEMBER, NYGC, AND LEWIS THOMAS UNIVERSITY PROFESSOR OF MEDICINE, WEILL CORNELL MEDICINE, AND CHARLES SAWYERS, MD, CHAIR, HUMAN ONCOLOGY AND PATHOGENESIS PROGRAM, MARIE-JOSE AND HENRY R. KRAVIS CHAIR, MEMORIAL SLOAN KETTERING CANCER CENTER, AND AFFILIATE MEMBER, NYGC. WITHIN THE LAST TWO YEARS, THE GCCG, COMPOSED OF CLINICIANS AND CANCER RESEARCHERS FROM NYGCS MEMBER INSTITUTIONS, INCLUDING SEVEN NCI-DESIGNATED CANCER CENTERS, HAS DEVELOPED TWO MAJOR MULTI-INSTITUTIONAL COLLABORATIONS. IN 2018, THE GROUP BEGAN WORK ON ITS POLYETHNIC-1000 PROJECT TO STUDY CANCER GENOMES OF UNDERSERVED, ETHNICALLY DIVERSE POPULATIONS. IN 2019, THE GCCG LAUNCHED THE VERY RARE CANCER CONSORTIUM, A NEW COLLABORATION TO HELP ADVANCE CLINICAL CARE FOR PATIENTS AFFECTED BY VERY RARE TUMOR TYPES. THESE PROJECTS ACHIEVED THE FOLLOWING PROGRESS MILESTONES IN 2019: POLYETHNIC-1000 ADVANCED TO EXTENSIVE PROSPECTIVE STUDY. AT AN OCTOBER 2019 RETREAT, RESEARCHERS SHARED THE FINDINGS OF THE POLYTETHNIC-1000 PROJECTS RETROSPECTIVE ANALYSIS OF OVER 100 SEQUENCED TUMOR SAMPLES FROM PATIENTS, COVERING CANCER TYPE, FREQUENCY OF GENETIC VARIATION, AND AN ESTIMATION OF GENETIC ANCESTRY. THE TEAM HAS FORGED STRONG CONNECTIONS BETWEEN ACADEMIC CENTERS AND PARTNER HOSPITALS AND IS NOW ADVANCING TO THE STUDYS NEXT PHASE, AN EXTENSIVE PROSPECTIVE STUDY OF PATIENTS. STUDY FINDINGS WILL BE STORED IN A DATABASE THAT WILL SERVE AS A GLOBAL RESOURCE FOR DEVELOPING HYPOTHESES AND UNDERSTANDING OF ETHNIC AND RACIAL DIVERSITY IN CANCER. WHERE SEQUENCING REVEALS AN ACTIONABLE MUTATION IN THE TUMOR, THE STUDY TEAM WILL VALIDATE THE RESULTS CLINICALLY AND SHARE THE INFORMATION WITH THE TREATING PHYSICIAN. THE VERY RARE CANCER CONSORTIUM LAUNCHED ITS MULTI-INSTITUTIONAL MOLECULAR TUMOR BOARD WHERE ONCOLOGISTS, HEMATOLOGISTS, SCIENTISTS, PATHOLOGISTS, COMPUTATIONAL BIOLOGISTS, AND OTHER MEMBERS OF THE CANCER GENOMICS COMMUNITY ARE CONVENING AT THE NYGC ON A REGULAR BASIS TO HOLD MULTIDISCIPLINARY MOLECULAR TUMOR BOARD MEETINGS. CLINICIANS FROM PARTICIPATING HOSPITALS REPORT CASE CONFERENCES TO THE TUMOR BOARD TO DETERMINE THE MOST EFFECTIVE TREATMENT FOR PATIENTS WITH VERY RARE CANCERS. DR. VARMUS AND OLIVIER ELEMENTO, PHD, DIRECTOR, ENGLANDER INSTITUTE FOR PRECISION MEDICINE, WEILL CORNELL MEDICINE, AND AFFILIATE MEMBER, NYGC, ARE CO-LEADING THE CONSORTIUM AND ITS TUMOR BOARD. AN NYGC SEQUENCING TEST LED TO NEW INSIGHTS INTO PANCREATIC CANCER AND IMPROVED TREATMENT FOR A PANCREATIC CANCER PATIENT IN 2019. CLINICIANS USED NYGC CLINICAL LABS WHOLE GENOME AND TRANSCRIPTOME SEQUENCING (WGTS) ONCOLOGY TEST TO INFORM THEIR TREATMENT PLAN FOR A PATIENT WITH PANCREATIC CANCER. THE WGTS ANALYSIS OF THE PATIENTS TUMOR GENOME IDENTIFIED A VARIANT THAT HAS BEEN SHOWN IN PRE-CLINICAL STUDIES TO BE SENSITIVE TO THE BRAF INHIBITOR DRUG DABRAFENIB. BASED ON THIS FINDING, CLINICIANS PROCEEDED TO TREAT THE PATIENT WITH DABRAFENIB. OVERALL, THE PATIENTS CLINICAL CONDITION IMPROVED SIGNIFICANTLY, WITH DABRAFENIB-INDUCED REMISSION LASTING FOR SIX MONTHS. THE PAPER ON THE CASE WAS PUBLISHED IN MOLECULAR CASE STUDIES IN SEPTEMBER 2019. NYGC SCIENTIST KAZ WRZESZCZYNSKI, PHD, ASSISTANT DIRECTOR, CLINICAL ONCOLOGY INFORMATICS, NYGC, IS CO-CORRESPONDING AUTHOR ON THE PAPER ON THE PANCREATIC CASE WITH SCOTT POWERS, PHD, AND MINSIG CHOI, MD, OF STONY BROOK CANCER CENTER, WITH OTHER NYGC SCIENTISTS FROM THE NYGC CLINICAL LAB AND BIOINFORMATICS AND SEQUENCING TEAMS AMONG THE CO-AUTHORS. TECHNOLOGY INNOVATION ---------------------- THE NEW GENOMICS TOOL ECCITE-SEQ DEVELOPED AT THE NYGC EXPANDED MULTIMODAL SINGLE CELL ANALYSIS. "INTERROGATION OF SINGLE CELLS TAKEN ONE STEP FURTHER," IS HOW ONE MEDIA OUTLET HERALDED THE SPRING 2019 RELEASE OF RELEASE OF ECCITE-SEQ, WHICH EXTENDS CITE-SEQ, THE POWERFUL SINGLE-CELL ANALYSIS TOOL DEVELOPED BY NYGC SCIENTISTS IN 2017, FOR USE IN COMBINATION WITH EXPLORATORY CRISPR GENE EDITING SCREENS. THE EXPANDED TECHNOLOGY WAS DEVELOPED IN A COLLABORATION LED BY THE NYGC TECHNOLOGY INNOVATION LAB WITH THE LABS OF NYGC CORE FACULTY MEMBERS NEVILLE SANJANA, PHD, AND RAHUL SATIJA, PHD, WHO HOLD JOINT APPOINTMENTS AT NYU, AND RESEARCHERS FROM THE JACKSON LABORATORY. THE TEAMS REPORT ON THE TOOL, PUBLISHED IN NATURE METHODS IN APRIL AND FEATURED ON ITS MAY 2019 COVER, INCLUDES DEMONSTRATING ECCITE-SEQS ABILITY TO FINELY DISSECT SPECIFIC CELL SUBTYPES AND CHARACTERIZE MALIGNANT POPULATIONS IN A SAMPLE FROM A PATIENT WITH CUTANEOUS T CELL LYMPHOMA. ECCITE-SEQ HAS RAPIDLY BEEN ADOPTED BY RESEARCH INSTITUTES THROUGHOUT THE WORLD, DEMONSTRATING ITS IMPORTANT IMPACT AND UTILITY TO THE FIELD. FURTHER ADVANCES ON GENOMIC TESTS AND TOOLS WERE MADE IN 2019. THE CANCER ANALYSIS TOOL GENOTYPING OF TRANSCRIPTOMES, DEVELOPED IN A COLLABORATION JOINTLY SUPERVISED BY NYGC CORE FACULTY MEMBER DAN LANDAU, MD, PHD, AND NYGC TECHNOLOGY INNOVATION LAB SENIOR MANAGER PETER SMIBERT, PHD, ENABLES MEASUREMENT OF GENE MUTATIONS AND THEIR EFFECTS ON GENE ACTIVITY WITHIN INDIVIDUAL CANCER CELLS BIOPSIED FROM PATIENTS. THE TEAMS STUDY WAS PUBLISHED IN NATURE IN JULY 2019. ANEVA (ANALYSIS OF EXPRESSION VARIATION), A NEW METHOD TO HELP DIAGNOSE RARE DISEASE, WAS DEVELOPED IN A STUDY SUPERVISED BY NYGC CORE FACULTY MEMBER TUULI LAPPALAINEN, PHD. THE METHOD FIRST TAKES DATA FROM A LARGE REFERENCE SAMPLE OF HEALTHY INDIVIDUALS. THEN, USING THE ANEVA DOSAGE OUTLIER TEST, RESEARCHERS WERE ABLE TO DIAGNOSE ADDITIONAL PATIENTS WHERE PREVIOUS METHODS OF GENOME AND RNA ANALYSIS HAD FAILED TO IDENTIFY THEIR RARE DISEASE VARIANTS. THE STUDY WAS PUBLISHED IN SCIENCE IN OCTOBER 2019. NYGCS CLINICAL LABS CLINICAL CONSTITUTIONAL WHOLE-GENOME SEQUENCING (WGS) TEST, RECEIVED NEW YORK STATE DEPARTMENT OF HEALTH APPROVAL AT YEAR-END 2019. THIS TEST OFFERS PHYSICIANS THE MOST COMPLETE PACKAGE OF GENOMIC DATA AVAILABLE FOR PATIENTS WITH UNDIAGNOSED DISEASES, AS WELL AS THOSE PATIENTS WHO ARE SEEKING PREDISPOSITIONAL GENETIC TESTING. THE NYGC BIOINFORMATICS TEAM COLLABORATED ON THE DEVELOPMENT OF AN INNOVATIVE GENOMIC TOOL IN 2017 EXPANSION HUNTER THAT IS USED IN THE WHOLE GENOME SEQUENCING TEST. IT ENABLES THE ANALYSIS OF GENETIC VARIATION IN SHORT TANDEM REPEAT REGIONS OF THE GENOME. |
| RESEARCH SEQUENCING | -------------------- NYGC HAS ONE OF THE LARGEST VOLUME WHOLE GENOME SEQUENCING PROGRAMS IN NEW YORK. IN THE PAST SIX YEARS, NYGC'S SEQUENCING LABORATORY HAS SEQUENCED OVER 77,000 WHOLE GENOME SAMPLES. NYGC HAS FIVE NOVASEQ SYSTEMS SEQUENCERS, WITH THE CAPACITY TO SEQUENCE OVER 40,000 GENOMES A YEAR. THIS STATE-OF-THE-ART SEQUENCING TECHNOLOGY ENABLES NYGC TO CONDUCT LARGE-SCALE GENOMICS PROJECTS WITH GREAT SPEED AND SAMPLE VOLUMES, AND TO EXPLORE THE GENOME IN MORE DEPTH WITH GREATER EFFICIENCY. NYGC'S RESEARCH SEQUENCING LAB, LED BY SOREN GERMER, PHD, SENIOR VICE PRESIDENT OF GENOME TECHNOLOGIES, PROCESSED MORE THAN 16,000 SAMPLES IN 2019, INCLUDING 12,262 WHOLE GENOME SEQUENCING SAMPLES (GERMLINE AND CANCER), 2,350 EXOME SEQUENCING SAMPLES, AND 2,200 TRANSCRIPTOME (RNA) SEQUENCING SAMPLES. OUR SUCCESS RATE FOR PASSING FLOW CELLS LANES ON THE NOVASEQ WAS 99.8%, NOT INCLUDING INSTRUMENT OR REAGENT ISSUES. AMONG OTHER LARGE COLLABORATIVE PROJECTS, SINCE 2016 NYGC HAS BEEN AWARDED $40 MILLION FROM THE NHGRI AS ONE OF THE CENTERS FOR COMMON DISEASE GENOMICS (CCDG) FOR WHOLE GENOME SEQUENCING. THROUGH THIS AWARD, THE NYGC HAS TAKEN ADVANTAGE OF ITS CLINICALLY FOCUSED, COLLABORATIVE STRUCTURE WITH AN EYE TOWARD ACHIEVING A COMPREHENSIVE UNDERSTANDING OF DIFFERENT TYPES OF COMMON DISEASES, WITH A CENTER-SPECIFIC FOCUS ON AUTISM. NYGC DECREASED THE PRICE PER GENOME BY OVER 25% SINCE THE BEGINNING OF THE PROJECT THROUGH TECHNOLOGY INNOVATION AND AUTOMATION OF ALIGNMENT AND VARIANT CALLING PIPELINES. AS A MEMBER OF THIS MULTI-INSTITUTIONAL CONSORTIUM, THE NYGC LEADS AND ENABLES COLLABORATION, COMMUNICATION, AND ANALYSIS BETWEEN CENTERS AND PRINCIPAL INVESTIGATORS, PARTICIPATING IN NUMEROUS WORKING GROUPS, STEERING COMMITTEES, AND CONFERENCES AS WELL AS LEADING THE NEUROPSYCHIATRIC WORKING GROUP, WHICH SPANS THREE INSTITUTIONS AND SEVERAL DISORDERS. IN 2019, NYGC APPLIED FOR AND RECEIVED A 5TH YEAR OF FUNDING FOR THIS PROJECT, TO FURTHER THE WHOLE GENOME SEQUENCING RESEARCH ADVANCING OUR UNDERSTANDING OF AUTISM. BY THE COMPLETION OF THE PROJECT IN 2020, NYGC WILL HAVE SEQUENCED OVER 40,000 AUTISM GENOMES WITH SEVERAL PENDING PUBLICATIONS. IN 2019, NYGC ALSO RECEIVED SUPPLEMENTAL FUNDS TO SEQUENCE THE 2,504 PHASE 3 PANEL 1000 GENOMES SAMPLES TO HIGH COVERAGE, CREATING A LARGE HIGH QUALITY OPEN-SOURCE DATASET OF THESE DIVERSE REFERENCE SAMPLES FREELY AVAILABLE TO THE GENOMICS RESEARCH COMMUNITY. |
| EDUCATION | --------- AS PART OF NYGC'S EDUCATIONAL MISSION, IT HOSTED MANY SCIENTIFIC MEETINGS, WORKSHOPS, CONFERENCES AND LECTURES IN 2019. THE NYGC GENOME CENTER CANCER GROUP ORGANIZES THE NEW YORK CANCER GENOMICS RESEARCH NETWORK MEETINGS THAT ARE HELD ON THE FIRST TUESDAY OF EVERY MONTH DURING THE ACADEMIC YEAR, BRINGING TOGETHER LEADING RESEARCHERS AND CLINICIANS FROM NYGC MEMBER AND OTHER ACADEMIC AND COMMUNITY-BASED INSTITUTIONS. THE MEETINGS ARE INTENDED PRIMARILY FOR PRINCIPAL INVESTIGATORS AND THEIR TRAINEES IN THE NEW YORK REGION. IN 2019, FIVE NEW SCIENTIFIC WORKING GROUPS WERE ESTABLISHED AT THE NYGC: NEURODEGENERATIVE DISEASE; NEUROPSYCHIATRIC DISEASE, COMPUTATIONAL CANCER GENOMICS; POPULATION GENOMICS; AND ENABLING INNOVATION. THESE NEW GROUPS, ALONG WITH NYGC'S FOUNDING WORKING GROUP, THE GENOME CENTER CANCER GROUP, ARE FORUMS FOR DISCUSSING CURRENT RESEARCH ADVANCES, TECHNICAL AND CONCEPTUAL CHALLENGES TO FURTHER PROGRESS, AND THE ESTABLISHMENT OF JOINT PROJECTS AND FUNDING STRATEGIES. NYGC'S BIOINFORMATICS TEAM HELD ITS FIFTH SEQUENCING INFORMATICS WORKSHOP IN FALL 2019. THE WORKSHOP OFFERS A MIX OF LECTURES FROM EXPERTS IN THE FIELD AND HANDS-ON EXERCISES TO STUDENTS EARLY IN THEIR TRAINING OR CAREER WHO HAVE PROJECTS INVOLVING NEXT GENERATION SEQUENCING. NYGC HELD "EVENING TALKS," A LECTURE SERIES FOR THE GENERAL PUBLIC ON ADVANCES IN GENOMIC SCIENCE, SPONSORED BY THE NEW YORK CITY COMMUNITY TRUST-PYEWACKET FUND. THESE TALKS ARE DESIGNED TO MAKE THE LATEST GENOMIC RESEARCH DISCOVERIES MORE ACCESSIBLE AND UNDERSTANDABLE FOR THE GENERAL PUBLIC. THESE WELL-ATTENDED LECTURES (AVERAGING 150 GUESTS PER EVENT) FEATURE PANELS OF LEADING RESEARCHERS AND CLINICIANS FROM NYGC AND/OR MEMBER INSTITUTIONS. IN 2019, NYGC HELD TALKS ON RARE DISEASE GENOMICS, THE LATEST ADVANCES IN DNA ANALYSIS, AND SPACE GENOMICS. NYGC HOSTED "FIVE POINTS" LECTURES FOR THE SCIENTIFIC COMMUNITY, FEATURING LEADING RESEARCHERS FROM AROUND THE COUNTRY AND ABROAD. THESE LECTURES BRING LEADING SCIENTISTS TO NYGC FOR IN-DEPTH DISCUSSIONS OF THEIR WORK WITH RESEARCHERS, CLINICIANS, AND STUDENTS FROM NYGC, ITS MEMBER INSTITUTIONS, AND OTHERS IN THE SCIENTIFIC COMMUNITY. ORGANIZATION MEMBERS FORM 990, PART VI, SECTION A, LINE 6: AS OF DECEMBER 31, 2019, THE CENTER HAD A TOTAL OF 19 MEMBERS, CONSISTING OF 12 INSTITUTIONAL FOUNDING MEMBERS AND SEVEN ASSOCIATE MEMBERS. *THE INSTITUTIONAL FOUNDING MEMBERS ARE THE FOLLOWING RECOGNIZED ACADEMIC, MEDICAL AND RESEARCH INSTITUTIONS: (1) COLD SPRING HARBOR LABORATORY, (2) CORNELL UNIVERSITY/WEILL CORNELL MEDICINE, (3) THE JACKSON LABORATORY, (4) MEMORIAL SLOAN-KETTERING CANCER CENTER, (5) ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI, (6) NEW-YORK-PRESBYTERIAN HOSPITAL, (7) NEW YORK UNIVERSITY, SCHOOL OF MEDICINE, (8) NORTHWELL HEALTH, (9) THE RESEARCH FOUNDATION OF STATE UNIVERSITY OF NEW YORK, ON BEHALF OF STONY BROOK UNIVERSITY, (10) THE ROCKEFELLER UNIVERSITY, (11) THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, AND (12) ALBERT EINSTEIN COLLEGE OF MEDICINE. *ASSOCIATE MEMBERS: (1) AMERICAN MUSEUM OF NATURAL HISTORY, (2) HOSPITAL FOR SPECIAL SURGERY, (3) THE NEW YORK STEM CELL FOUNDATION, (4) ROSWELL PARK CANCER INSTITUTE, (5) PRINCETON UNIVERSITY, (6) HACKENSACK MERIDIAN HEALTH, AND (7) GEORGETOWN LOMBARDI COMPREHENSIVE CANCER CENTER. |
| ORGANIZATION MEMBERS - DECISION MAKING | FORM 990, PART VI, SECTION A, LINE 7A & 7B: EACH INSTITUTIONAL FOUNDING MEMBER APPOINTS ONE REPRESENTATIVE TO SERVE ON NYGC'S BOARD OF DIRECTORS. THE BOARD OF DIRECTORS ALSO INCLUDES THE SCIENTIFIC DIRECTOR AND OTHER DESIGNATED DIRECTORS OR INDIVIDUALS APPOINTED BY THE BOARD. DECISIONS REQUIRING BOARD APPROVAL INCLUDE THE ADMISSION OF NEW MEMBERS, CHANGES TO THE MISSION, CERTIFICATE OF INCORPORATION, AND BYLAWS, APPOINTMENT OR REMOVAL OF THE CHAIRPERSON OF THE BOARD AND THE SCIENTIFIC DIRECTOR, AND ADOPTION OF CERTAIN POLICIES AND PROCEDURES. THE BOARD ALSO REVIEWS AND APPROVES THE ANNUAL OPERATING BUDGET. MANAGEMENT HAS THE ABILITY TO ENTER INTO BUSINESS ARRANGEMENTS AND CONTRACTS, INCLUDING FINANCING ARRANGEMENTS. |
| FORM 990 REVIEW | FORM 990, PART VI, SECTION B, LINE 11: THE FORM 990 IS PREPARED BY AN INDEPENDENT PUBLIC ACCOUNTING FIRM, UTILIZING INFORMATION PROVIDED BY MANAGEMENT. UPON RECEIPT OF THE DRAFT FORM 990, MANAGEMENT, INCLUDING THE DIRECTOR OF FINANCE; GENERAL COUNSEL; AND PRESIDENT & COO, REVIEW THE FORM. PRIOR TO FILING, MANAGEMENT PRESENTS THE FORM 990 TO THE AUDIT COMMITTEE OF THE BOARD FOR REVIEW AND COMMENT. ALSO PRIOR TO FILING, MANAGEMENT PROVIDES THE FORM 990 TO THE ENTIRE BOARD OF DIRECTORS. |
| CONFLICT OF INTEREST POLICY & REVIEW | FORM 990, PART VI, SECTION B, LINE 12C: NYGC REQUIRES ALL INTERESTED PERSONS (DEFINED AS BOARD MEMBERS, PRINCIPAL OFFICERS, OR MEMBERS OF A COMMITTEE TO WHICH THE BOARD HAS DELEGATED POWERS) TO DISCLOSE CONFLICTS OF INTEREST AS REQUIRED BY THE CONFLICT OF INTEREST POLICY. NYGC FOLLOWS A PROCEDURE FOR OBTAINING SUCH DISCLOSURES ANNUALLY. ANY POTENTIAL CONFLICTS OF INTEREST MUST BE REVIEWED BY THE BOARD. IF AN INTERESTED PERSON HAS A POTENTIAL CONFLICT OF INTEREST, HE OR SHE MAY MAKE A PRESENTATION AT THE BOARD OR COMMITTEE MEETING, BUT AFTER SUCH PRESENTATION, HE/SHE SHALL LEAVE THE MEETING DURING THE DISCUSSION OF, AND THE VOTE ON, THE TRANSACTION OR ARRANGEMENT THAT CREATES THE POTENTIAL CONFLICT OF INTEREST. |
| COMPENSATION REVIEW AND APPROVAL | FORM 990, PART VI, SECTION B, LINE 15: FOR THE ORGANIZATION'S TOP MANAGEMENT OFFICIAL, PLEASE REFER TO SCHEDULE J NARRATIVES FOR THE PROCESS OF DETERMINING COMPENSATION. IN LATE 2018 NYGC HIRED AN INDEPENDENT COMPENSATION CONSULTANT TO PERFORM AN EXECUTIVE TOTAL COMPENSATION STUDY OF SENIOR MANAGEMENT'S COMPENSATION. RESULTS OF THIS REVIEW WERE PROVIDED TO THE AD-HOC COMPENSATION COMMITTEE IN EARLY 2019 AND THE COMMITTEE DISCUSSED THEM. THE REVIEW SHOWED THAT THE COMPENSATION PAID TO ALL MEMBERS OF SENIOR MANAGEMENT (PRESIDENT AND COO, CHIEF BUSINESS OFFICER, SENIOR VICE PRESIDENT, FINANCE & ADMINISTRATION, SVP, GENOME TECHNOLOGIES, VICE PRESIDENT, DEVELOPMENT AND COMMUNICATIONS, VICE PRESIDENT & GENERAL COUNSEL, AND THE SCIENTIFIC DIRECTOR AND CEO) WAS REASONABLE. THE AD-HOC COMPENSATION COMMITTEE DISCUSSED SENIOR MANAGEMENT COMPENSATION IN EARLY 2019. THREE MEMBERS OF SENIOR MANAGEMENT RECEIVED MERIT INCREASES IN 2019 (PRESIDENT AND COO, VICE PRESIDENT & GENERAL COUNSEL, AND THE SCIENTIFIC DIRECTOR AND CEO), WHICH WERE APPROVED BY THE AD-HOC COMPENSATION COMMITTEE IN JANUARY 2019. WHILE THE SCIENTIFIC DIRECTOR & CEOS COMPENSATION IS SET BY AN UNRELATED ENTITY, THE AD-HOC COMPENSATION COMMITTEE COMMUNICATED WITH THE UNRELATED ENTITY TO APPROVE HIS MERIT INCREASE IN 2019. THE OTHER MEMBERS OF THE SENIOR MANAGEMENT TEAM DID NOT RECEIVE MERIT INCREASES IN 2019 AND THEIR COMPENSATION REMAIN UNCHANGED. |
| DOCUMENT DISCLOSURE | FORM 990, PART VI, SECTION C, LINE 19: NYGC'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. COMPENSATION OF OFFICERS AND DIRECTORS FORM 990, PART VII, SECTION A IN 2019, THE SCIENTIFIC DIRECTOR & CEO, WAS EMPLOYED BY AN UNRELATED ENTITY AND LEASED TO NYGC TO DEVOTE 80% OF HIS TIME AND EFFORT TO SERVING AS NYGC'S SCIENTIFIC DIRECTOR AND CEO, AN OFFICER OF THE CORPORATION, AND AN ASSOCIATE MEMBER OF NYGC'S FACULTY, WITH RESPONSIBILITY FOR OVERSEEING NYGC'S RESEARCH PROGRAM AND FOR UNDERTAKING SUCH OTHER ACTIVITIES AS NYGC'S BOARD OF DIRECTORS REQUESTED FROM TIME TO TIME. THE SCIENTIFIC DIRECTOR & CEO DEVOTES 20% OF HIS TIME TO HIS DUTIES AT THE UNRELATED ENTITY, WHERE HE MAINTAINS A LABORATORY AND CONDUCTS INDEPENDENT, INVESTIGATOR-INITIATED RESEARCH PROJECTS. |
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