2024-11-15T19:03:21-06:00 2023-12-31 873231666 PKF O'CONNOR DAVIES ADVISORY LLC 245 PARK AVENUE 12TH FLOOR NEW YORK NY 10167 990PF 2023-01-01 010759380 SPINAL MUSCULAR ATROPHY FOUNDATION SPIN 6462537100 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DINAKAR SINGH BOARD CHAIRMAN 6462537100 2024-11-15 1 0 MICHAEL R KOENECKE CPA P02100881 2122862600 2023 2024-10-15 13:58:12Z X 33691989 X 52414 1272150 1272150 0 11183186 11183186 0 12507750 12455336 0 0 0 0 0 886948 0 0 886948 132003 0 0 109732 21150 0 0 46033 126814 0 0 126814 350928 0 0 0 144610 0 0 144928 67569 0 0 78058 1730022 0 0 1392513 1911506 1155632 3641528 0 0 2548145 8866222 12455336 0 780854 196091 196091 23187710 33471451 33471451 13107 92480 13107 13107 11540 11340 11340 20310 20310 7304 0 0 24079888 33691989 33691989 98566 84947 1423413 2132700 0 3624 1521979 2221271 X 22557909 31470718 22557909 31470718 24079888 33691989 22557909 8866222 46587 31470718 0 31470718 173129 0 173129 0 173129 172304 0 20000 0 192304 X 2799 16376 16376 0 0 0 0 0 0 0 0 0 0 0 1 1 CA CT KY MN NJ NY 1 0 0 0 0 1 WWW.SMAFOUNDATION.ORG KAREN CHEN 6462537100 970 W BROADWAY STE E PMB 140 JACKSON WY 10022 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 DINAKAR SINGH 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 BOARD CHAIRMAN 1.00 0 0 0 DOUGLAS COLE MD 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 1.00 0 0 0 GERALD FISCHBACH MD 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 1.00 0 0 0 ANDREW KNIGHT 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 1.00 0 0 0 JONATHAN LEFF 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 1.00 0 0 0 HELEN MEATES 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 1.00 0 0 0 STEPHEN MIKITA ESQ 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 1.00 0 0 0 JULI OH ESQ 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 TREASURER 1.00 0 0 0 SIMON PRISK ESQ 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 1.00 0 0 0 STORY LANDIS 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 1.00 0 0 0 LOREN ENG 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 PRESIDENT 15.00 0 0 0 KAREN CHEN 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 CHIEF EXECUTIVE OFFI 40.00 575000 19271 0 KELLY HOWELL 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR 40.00 185000 19271 0 YING QIAN 970 W BROADWAY STE E PMB 140 JACKSON WY 83001 DIRECTOR OF STRAT. & 40.00 104325 19271 0 0 MYOLOGICA LLC 6808 WOODRIDGE RD NEW MARKET MD 21774 MEDICAL RESEARCH 126814 0 SEE STATEMENT 9 931811 0 0 27138805 0 27138805 0 0 27138805 407082 26731723 1336586 1336586 173129 173129 1163457 0 1163457 0 1163457 2548145 0 2548145 1163457 0 0 3970686 1556153 1249943 1706942 2155410 10639134 2548145 0 0 0 1163457 1384688 0 0 12023822 0 0 0 0 0 0 3970686 8053136 1556153 1249943 1706942 2155410 1384688 DINAKAR SINGH X STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC OVERSIGHT ON THE STANFORD-SMA FOUNDATION REGENERATIVE MEDICINE PROGRAM PROJECTS 162935 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC DEVELOPMENT OF NONINVASIVE GENE EDITING METHODS 69000 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC GENERATION OF HINDBRAIN MOTOR NEURONS FROM PLURIPOTENT CELLS 138000 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC CHARACTERIZATION OF MUSCLE IN SMA PATIENTS 138000 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC ANALYSIS OF GENE EXPRESSION AND SPLICING IN SMA PATIENT CELLS 207000 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC GENERATION AND CHARACTERIZATION OF SKELETAL MUSCLE FROM INDUCED PLURIPOTENT STEM CELLS FROM SMA PATIENTS 86250 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC GENERATION OF SPINAL CORD MOTOR NEURONS FROM PLURIPOTENT CELLS 138000 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC CHARACTERIZATION OF NEURON-GLIAL-IMMUNE CELL INTERACTIONS IN SMA 117494 UNIVERSITY OF FLORIDA UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE 1600 SW ARCHER RD GAINESVILLE FL 32610 N/A PC CHARACTERIZATION OF MUSCLE ENVIRONMENT IN SMA 98953 1155632 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC OVERSIGHT ON THE STANFORD-SMA FOUNDATION REGENERATIVE MEDICINE PROGRAM PROJECTS 518728 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC DEVELOPMENT OF NONINVASIVE GENE EDITING METHODS 34500 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC CHARACTERIZATION OF MUSCLE IN SMA PATIENTS 69000 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC GENERATION OF SPINAL CORD MOTOR NEURONS FROM PLURIPOTENT CELLS 207000 STANFORD UNIVERSITY STANFORD SCHOOL OF MEDICINE 770 WELCH ROAD PALO ALTO CA 94304 N/A PC CHARACTERIZATION OF NEURON-GLIAL-IMMUNE CELL INTERACTIONS IN SMA 770775 UNIVERSITY OF FLORIDA UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE 1600 SW ARCHER RD GAINESVILLE FL 32610 N/A PC CHARACTERIZATION OF MUSCLE ENVIRONMENT IN SMA 296860 UNIVERSITY OF EDINBURGH UNIVERSITY OF EDINBURGH QUEENS MEDICAL RESEARCH INSTITUTE 47 LITTL EDINBURGH UK EH16 4UU N/A PC CHARACTERIZATION OF NEUROMUSCULAR JUNCTIONS IN SMA 282424 2179287 14 1272150 LICENSING INCOME 01 11183186 0 12455336 0 12455336 0 0 0 0 0 0 0 0 0 0 X X 1 TRI STAR FREIGHT SYSTEM INC 5407 MESA DRIVE HOUSTON TX 77028 5000 X 2 NANCY VIOLA 7 HAMBLETONIAN DRIVE COLTS NECK NJ 07722 6000 X 3 HELEN MEATES 60 RIVERSIDE BOULEVARD APT 3401 NEW YORK NY 10069 10000 X AUDIT AND TAX PREPERATION 21150 0 0 46033 FORM 990-PF; PAGE 7; PART VIII-A; LINE 1 1 DIRECT RESEARCH ACTIVITIES $128,814 THE SMA FOUNDATION MAINTAINS AN ACTIVE RESEARCH PROGRAM IN SPINAL MUSCULAR ATROPHY IN ORDER TO ACOMPLISH ITS PRIMARY MISSION TO ACCELERATE THE DEVELOPMENT OF A TREATMENT FOR SMA. THESE STUDIES ARE CONDUCTED THROUGH CONTRACT SERVICES WITH INDUSTRY ACADEMIC AND PARTNERS. FOUNDATION STAFF ANALYZE THE RESULTS, PUBLISH THE FINDINGS IN SCIENTIFIC JOURNALS AND PRESENT THEM AT SCEINTIFIC CONFERENCES. ALL RESEARCH TOOLS, EG, ANIMAL MODELS, ESSAYS, AND DATA THAT ARE GENERATED BY THE FOUNDATION'S OWN INTERNAL RESEARCH, ARE MADE AVAILABLE TO THE GENERAL PUBLIC AND/OR THE SCEINTIFC COMMUNITY AT MINIMAL TO NO COST. THE LATER INCLUDES THE ENTIRE DATASET OF THE BIOMAKERS FOR SMA STUDY, A MAJOR STUDY LOOKING FOR BIOCHEMICAL CORRELATES OF THE DISEASE THAT CAN BE USED TO EVALUATE AND ACCELERATE CLINICAL TRIALS. 2 EDUCATIONAL - MATERIALS & RESEARCH FINDINGS $763,615 - FOR PATIENTS AND THEIR FAMILIES, SMA FOUNDATION PROVIDES GENERAL MATTERIALS ON SMA AND SMA BIOLOGY, DOCUMENTS DESCRIBING STANDARDS OF CARE, MATERIALS RELATED TO THE CURRENT STATE OF THERAPEUTICS. MOST OF THESE MATERIALS ARE PREPARED BY THE FOUNDATIONS STAFF FOR RESEARCH SCIENTISTS, THE FOUNDATION PREPARES SUMMARIES OF RESEARCH FINDINGS AND USEFUL TOOLS FOR SMA RESEARCHERS. THE FOUNDATION ALSO PREPARES AND DISTRIBUTES RECENT NEWS RELATED TO SMA VIA THE FOUNDATION'S MAILING LISTS IN ORDER TO ENSURE THAT NEW INFORMATION ON SMA IS RAPIDLY DISSEMINATED TO THE COMMUNITY IN ADDITION, THE FOUNDATION PROVIDES INFORMATION ON THE STATE OF SMA RESEARCH TO PATIENTS AND THEIR FAMILIES THAT CALL SMA FOUNDATION. 3 EDUCATIONAL - WEBSITE $39,382 THE SMA FOUNDATION MAINTAINS A WEBSITE WITH GENERAL INFORMATION ABOUT THE FOUNDATIONS RESEARCH PROGRAM AND EDUCATIONAL MATERIALS TARGETED TO BOTH PATIENTS AND THEIR FAMILIES AND TO RESEARCHERS. THE FOUNDATION WIEBSITE IS CONSTANTLY UPDATED BY THE STAFF FOR FURTHER INFORMATION. SEE WWW.SMAFOUNDATION.ORG. TOTAL EXPIENSES FOR DIRECT ACTIVITIES $931,811. PREPAID FEDERAL EXCISE TAX 7304 DATA PROCESSING 9547 0 0 8875 FILING FEES 875 0 0 150 INSURANCE 22916 0 0 26089 MEMBERSHIP DUES 2018 0 0 2018 PAYROLL PROCESSING 5778 0 0 5778 POSTAGE 985 0 0 1014 SUPPLIES 5753 0 0 14508 TELEPHONE 6126 0 0 6055 MISCELLANEOUS 13476 0 0 13476 WEBSITE 95 0 0 95 LICENSING INCOME 11183186 11183186 0 PRESENT VALUE DISCOUNT ADJUSTMENT 46587 FEDERAL EXCISE TAX PAYABLE 0 3624 CONTRACT RESEARCH 126814 0 0 126814 FEDERAL EXCISE TAX 350928 0 0 0