2018-05-14T19:04:36-05:00 2017-12-31 942682998 OUM & CO LLP 601 CALIFORNIA STREET SUITE 1800 SAN FRANCISCO CA 94108 990 2017-01-01 465727883 GRACE SCIENCE FOUNDATION GRAC 4152557666 235 KANSAS STREET SUITE 200 SAN FRANCISCO CA 94103 MATTHEW R WILSEY PRESIDENT 4152557666 2018-05-11 1 BRADFORD WEISERT P00044664 4154343744 2017 2022-09-23 18:48:47Z MATTHEW R WILSEY 235 KANSAS STREET SUITE 200 SAN FRANCISCO CA 94103 1677107 0 X WWW.GRACESCIENCE.ORG X 2014 CA THE MISSION OF THE FOUNDATION IS TO SUPPORT AND FUND THE DEVELOPMENT OF LIFE-SAVING TREATMENT FOR PATIENTS THAT ARE DEFICIENT IN THE N-GLYCANESE ENZYME AND THOSE SUFFERING FROM RELATED GENETIC DISEASES. 7 7 0 5 0 0 600124 1651481 0 0 0 0 0 25626 600124 1677107 612814 696567 0 0 1247 0 0 0 0 255746 223947 869807 920514 -269683 756593 1336131 2109224 0 16500 1336131 2092724 X THE MISSION OF THE FOUNDATION IS TO SUPPORT AND FUND THE DEVELOPMENT OF LIFE-SAVING TREATMENT FOR PATIENTS THAT ARE DEFICIENT IN THE N-GLYCANESE ENZYME AND THOSE SUFFERING FROM RELATED GENETIC DISEASES. THE ACTIVITIES OF THE FOUNDATION WILL INVOLVE PROVIDING GRANT FUNDING TO HOSPITALS AND MEDICAL RESEARCH FACILITIES WHICH ARE CONDUCTING MEDICAL RESEARCH IN VARIOUS FIELDS RELATING TO THE SEARCH FOR UNDERSTANDING AND TREATMENT OF THIS CONDITION, AND FOSTERING COLLABORATION BETWEEN ACADEMIA, RESEARCH INSTITUTIONS, HOSPITALS, PRIVATE COMPANIES, AND GOVERNMENTAL AGENCIES. 0 0 267670 250000 STANFORD UNIVERSITY (STEINMETZ LAB) - TEAM USED A SYSTEM GENETICS APPROACH TO INVESTIGATE THE MECHANISMS BEHIND NGLY1 DEFICIENCY. THEY DEVELOPED AND LAUNCHED HIGH THROUGHPUT SCREENING FOR GENES AND COMPOUNDS THAT INFLUENCE NGLY1 DEFICIENT CELLS, DEFINED THERAPEUTIC AND MOLECULAR INTERVENTION POINTS, AND CHARACTERIZED NGLY1 DEFICIENT CELLS ON A MOLECULAR BASIS. TEAM IS NOW WORKING TO DISSEMINATE THE DATA ALREADY GATHERED AND EXPANDING THE FINDINGS THEY HAVE ALREADY MADE. 117670 100000 MASSACHUSETTS GENERAL HOSPITAL - TEAM COMPLETED LARGE-SCALE GENETIC SCREENS FOR MODIFIERS OF PROTEASOME DYSFUNCTION IN PNG-1/NGLY1 DEFICIENT C. ELEGANS. THESE SCREENS IDENTIFIED CONSERVED GENES THAT ARE POSSIBLE THERAPEUTIC TARGETS FOR TREATMENT OF NGLY1 DEFICIENCY AND LIKELY OTHER DISEASES OF PROTEOTOXIC DISTRESS. THE TEAM ALSO CONTINUED EXPERIMENTS AIMED AT UNDERSTANDING PNG-1 SUPPRESSORS' MECHANISM(S) OF ACTION. IN ADDITION, THE LAB GENERATED TRANSGENIC ANIMALS THAT EXPRESS AN ENGINEERED SKN-1A THAT BYPASSES THE REQUIREMENT FOR DEGLYCOSYLATION BY PNG-1. THE ANALYSIS OF THESE ANIMALS PROVIDES NEW EVIDENCE THAT DEFECTS RESULTING FROM PNG-1 / NGLY1 DEFICIENCY MAY BE ENTIRELY EXPLAINED BY FAILURE TO ACTIVATE SKN-1A/NRF1. 117670 100000 STANFORD UNIVERSITY (BERTOZZI LAB) - TEAM UNCOVERED AN INTERESTING PHENOTYPE OF NGLY1 DEFICIENT STEM CELLS THAT COULD BE AMENABLE TO HIGH-THROUGHPUT SCREENS FOR CORRECTIVE THERAPIES (BOTH SMALL MOLECULE AND GENE-BASED APPROACHES). THIS PHENOMENON MAY EXPLAIN VARIOUS HUMAN PATHOLOGIES OF TISSUES DERIVED FROM NEURAL CREST. IN ADDITION, TEAM MADE PROGRESS SCREENING SMALL MOLECULES FOR COMPENSATION OF DEFECTS IN NRF1-MEDIATED CYTOPROTECTION. TEAM COMPLETED A FINAL SET OF EXPERIMENTS IN ZEBRAFISH NGLY1 MODELS TO DETERMINE WHETHER THERE WERE FUNCTIONAL PHENOTYPES WORTH PURSUING IN AN EFFORT TO BETTER UNDERSTAND THE HUMAN DISEASE. TEAM CONCLUDED THAT THIS MODEL SHOULD NOT BE PRIORITIZED (AT LEAST NOT IN THIS LAB). FINALLY, THE BERTOZZI LAB DEVELOPED A SYSTEM FOR NGLY1-ASSOCIATED PROTEINS (SUBSTRATES) IN CELLS. THIS PLATFORM SHOULD BE USEFUL FOR IDENTIFYING NGLY1 SUBSTRATES IN AN UNBIASED MANNER. 106943 89273 PERLARA, PBC - TEAM ESTABLISHED HIGH THROUGHPUT SCREENING (HTS) CONDITIONS FOR TWO PARALLEL HTS CAMPAIGNS (1 IN WORM AND 1 IN FLY). EACH SCREEN WOULD TEST AGAINST 20,000 NOVEL COMPOUNDS TO SEE IMPROVEMENT LARVAL SIZE AS PHENOTYPIC READOUTS. FOUND SPECIFIC COMPOUND IS A ROBUST SUPPRESSOR OF THE LARVAL SIZE DEFECT OF NGLY1-DEFICIENT FLIES AND THAT THE EFFECTS APPEAR CONSISTENT WITH REGULATION BY THE FLY NRF1/2 HOMOLOGS. THIS LATER PIECE IS HELPFUL IN CONFIRMING A CRITICAL PIECE OF BIOLOGY THAT RESEARCHERS HAD HYPOTHESIZED ON RECENTLY. FINALLY, THE TEAM PUBLISHED A MANUSCRIPT SUMMARIZING ALL FINDINGS FROM STAGES 1 AND 2. 77671 60000 BAYLOR COLLEGE OF MEDICINE - TEAM DUG IN DEEPER ON THE CONNECTION BETWEEN NGLY1 DEFICIENCY AND BMP SIGNALING (A LINK THAT THIS TEAM HAD PUBLISHED ON PREVIOUSLY). THE LAB ALSO DEVELOPED A TEST TO MEASURE A SPECIFIC READ-THROUGH MOLECULE'S ABILITY TO RESCUE THE DISEASE IN FLIES. ONCE BUILT, THE TEAM IDENTIFIED IDEAL DOSAGE. THE TEAM ALSO STUDIED DIFFERENT DIET COMBINATIONS THAT LESSEN THE SEVERITY OF THE DISEASE. THESE FINDINGS COULD LEAD TO SIMPLE CHANGES FOR HUMAN PATIENTS THAT WOULD IMPROVE QUALITY OF LIFE. FINALLY, THE GROUP COLLABORATED WITH A LAB AT STANFORD TO SHOW THAT INCREASING IN SPECIFIC METABOLIC PATHWAY COULD HELP RESCUE PHENOTYPE. 114963 97294 OTHER PROGRAM SERVICES ARE RELATED TO RESEARCH AND DEVELOPMENT TO UNDERSTAND AND CURE RARE DISEASES BEGINNING WITH NGLY1 DEFICIENCY. 299577 246567 802587 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 8 0 0 0 0 0 0 0 0 0 0 0 0 X 7 7 1 0 0 0 0 1 0 1 0 0 0 0 1 1 1 0 0 0 0 0 CA X GRACE SCIENCE FOUNDATION 4152557666 235 KANSAS STREET SUITE 200 SAN FRANCISCO CA 94103 X MATTHEW WILSEY PRESIDENT 20.00 X X 0 0 0 EGON DURBAN CHIEF FINANCIAL OFFICER 1.00 X X 0 0 0 KEN DRAZAN SECRETARY 1.00 X X 0 0 0 PETE BRIGER DIRECTOR 1.00 X 0 0 0 CHELSEA CLINTON DIRECTOR 1.00 X 0 0 0 J TAYLOR CRANDALL DIRECTOR 1.00 X 0 0 0 ELLE STEPHENS DIRECTOR 1.00 X 0 0 0 0 0 0 0 0 0 0 0 1651481 1651481 RETURN OF GRANT MONEY 541900 25626 25626 25626 1677107 0 0 25626 659067 659067 37500 37500 17525 17525 4250 4250 65750 65750 800 800 9290 1985 7305 26390 26352 38 77585 77567 18 1071 116 955 OTHER FEES (BANK, CREDI 20129 20129 MISCELLANEOUS EXPENSES 1052 1052 FILING FEES 105 105 920514 802587 117927 0 1336006 2109224 125 0 1336131 2109224 0 16500 0 16500 X 0 0 0 0 1336131 2092724 1336131 2092724 1336131 2109224 756593 0 X 0 0 0 X 664490 1560381 600124 1677107 4502102 664490 1560381 600124 1677107 4502102 1529874 2972228 4502102 X PART II AND LINE 13 GRACE SCIENCE FOUNDATION WAS FORMED ON MAY 19, 2014. 2017 IS THE FOUNDATION'S FOURTH YEAR OF EXISTENCE. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 0 0 0 0 CANADA NGYL1 WORK IN CHARLIE BOONE'S & JASON MOFFAT'S LABS AT UNIVERSITY OF TORONTO 37500 CHECK 1 0 0 0 0 0 0 1 PERLARA PBC 6000 SHORELINE CT SUITE 204 S SAN FRANCISCO CA 94080 90000 ASSAY DEVELOPMENT & COMPOUND SCREENING STANFORD UNIVERSITY 3145 PORTER DRIVE PALO ALTO CA 94304 941156365 501(C)(3) 350000 NGLY1 WORK IN CAROLYN BERTOZZI'S LAB AND LARS STEINMETZ LAB MASSACHUSETTS GENERAL HOSPITAL 125 NASHUA STREET SUITE 540 BOSTON MA 02114 041564655 501(C)(3) 100000 NGLY1 WORK IN GARY RUVKUN'S LAB BAYLOR COLLEGE OF MEDICINE 1102 BATES AVENUE SUITE 48002 HOUSTON TX 77030 741613878 501(C)(3) 65000 NGLY1 WORK IN HAMED JAFAR-NEJAD'S LAB VIRGINIA COMMONWEALTH UNIVERSITY 800 E LEIGH ST STE 3200 BOX RICHMOND VA 23298 546001758 501(C)(3) 37567 NGLY1 WORK IN SENTHIL RADHAKRISHNAN'S LAB STANFORD HEALTHCARE 300 PASTEUR DRIVE MC 5555 STANFORD CA 94305 946174066 501(C)(3) 16500 FIBROBLAST COLLECTION 5 1 PART I, LINE 2: * BEFORE FUNDING A PRINCIPAL INVESTIGATOR, THE FOUNDATION REQUIRES A DETAILED PROPOSAL WITH OBJECTIVES AND MILESTONES * THE PROPOSALS ARE REVIEWED BY THE FOUNDATION AND SCIENTIFIC ADVISORY BOARD * THE PROPOSALS ARE OFTEN REVISED SEVERAL TIMES TO GET THE CORRECT FIT * ONCE FUNDED, EACH PRINCIPAL INVESTIGATOR SUBMITS A WRITTEN SUMMARY EVERY QUARTER * THIS UPDATE IS TWO TO THREE PAGES IN LENGTH * THE REPORTS DISCUSS PROGRESS, HIGHLIGHT ROADBLOCKS AND IDENTIFY WHERE THEY NEED HELP * THE FOUNDATION STEPS-IN WHERE APPROPRIATE TO MAKE SURE OBJECTIVES AND MILESTONES ARE MET * IN ADDITION TO QUARTERLY REPORTS, THE FOUNDATION HOLDS A MONTHLY CONFERENCE CALL WHERE TWO TO THREE PRINCIPAL INVESTIGATORS PRESENT THEIR LATEST WORK * BEYOND THE ABOVE TWO INITIATIVES, THE FOUNDATION HOLDS ONE TO TWO IN-PERSON MEETINGS PER YEAR * DR. KEVIN LEE (CHIEF SCIENTIFIC OFFICER), DR. SELINA DWIGHT (PROGRAM MANAGER), AND MATT WILSEY(PRESIDENT) CONTACT RESEARCHERS AND PRINCIPAL INVESTIGATORS ON A REGULAR BASIS VIA EMAIL, PHONE, OR ONE ON ONE MEETINGS THE PRESIDENT ENSURES THAT EVERY DOLLAR IS USED TO SUPPORT THE GRACE SCIENCE FOUNDATION'S MISSION. FORM 990, PART VI, SECTION A, LINE 2 THE PRESIDENT OF THE FOUNDATION HAS IMMATERIAL OWNERSHIP INTEREST, IN THE INVESTMENTS OF FORTRESS AND SILVER LAKE, WHICH ARE MANAGED BY TWO OF THE DIRECTORS. FORM 990, PART VI, SECTION A, LINE 7A THE PRESIDENT OF THE FOUNDATION HAS AUTHORITY TO ELECT ONE OR MORE MEMBERS OF THE GOVERNING BODY. FORM 990, PART VI, SECTION A, LINE 8B THE FOUNDATION DOES NOT HAVE ANY COMMITTEES. FORM 990, PART VI, SECTION B, LINE 11B PRIOR TO FILING FROM 990, THE FOUNDATION'S PRESIDENT WILL REVIEW THE FORM. FORM 990, PART VI, SECTION B, LINE 12C NEW BOARD MEMBERS ARE REQUIRED TO COMPLETE A CONFLICTS OF INTEREST POLICY AND SELF REPORT ANY CHANGES THAT MAY PRESENT A CONFLICT. FORM 990, PART VI, SECTION C, LINE 18 AVAILABLE UPON REQUEST. FORM 990, PART VI, SECTION C, LINE 19 AVAILABLE UPON REQUEST.