2016-05-31T14:30:15-05:00 2015-12-31 363858249 Stern Cassello & Associates LLP 1 N LaSalle St Suite 1620 Chicago IL 60602 990 2015-01-01 222480896 Charcot-Marie-Tooth Association CHAR 6104999264 PO Box 105 Glenolden PA 19036 Mr Patrick Livney CEO 6104999264 2016-05-25 1 James R Stern P00831572 3122639100 2016-05-25 X 2015 2016-09-27 15:27:22Z Mr Patrick Livney 365 Elder Lane Winnetka IL 600934250 3927316 0 X www.cmtausa.org X 1983 PA To support the development of new drugs to treat Charcot-Marie-Tooth disease(CMT), to improve the quality of life for people with CMT and, ultimately, to find a cure. 14 14 14 0 1191 0 2361672 2297705 336617 618370 2615 1191 452098 734828 3153002 3652094 1586583 1879117 0 0 600150 965751 0 0 633234 611360 1194770 2798093 4039638 354909 -387544 1707384 1546625 289670 516455 1417714 1030170 X To support the development of new drugs to treat Charcot-Marie-Tooth disease(CMT), to improve the quality of life for people with CMT and, ultimately, to find a cure. 0 0 2001109 1879117 The organization awards research fellowships and grants for research on Charcot-Marie-Tooth Disease. It also hosts bi-annual meetings of all researchers receiving its funding to promote knowledge exchange and synergy, as well as meetings and consortiums of others working in this field. It uses the services of a medical research consultant to oversee the selection of the recipients of the research funding and to write the grants and contracts with these researchers. (See Part VII, Section B). 156391 The organization publishes a bi-monthly newsletter and other educational publications and maintains a website for patients, their families, and medical practitioners to assist in understanding and treating Charcot-Marie-Tooth Disease. 178340 618370 The organization organizes and conducts support groups, conferences and educational webinars for patients, their families, and medical practitioners, to share knowledge and promote awareness of CMT Disease. 963264 Allocated Program Services Expenses such as Salaries, Benefits, Occupancy Expenses, and Management Services. 963264 3299104 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 0 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 13 0 1 14 1 0 0 0 0 0 0 0 0 0 0 X 14 14 0 0 0 0 0 0 0 1 1 0 0 1 1 1 0 1 1 1 0 0 PA X X Kimberly Magee 6104999264 P O Box 105 Glenolden PA 19036 Herbert Beron Chairman/President 0.00 X X 0 0 0 Stephen D Blevit Director 0.00 X 0 0 0 Gary J Gasper Treasurer 0.00 X X 0 0 0 Alan Korowitz Director 0.00 X 0 0 0 Steven O'Donnell Director 0.00 X 0 0 0 Elizabeth Ouellette Vice Chair/Secretary 0.00 X X 0 0 0 Phyllis Sanders Director 0.00 X 0 0 0 William Vangelos Director 0.00 X 0 0 0 Dr Peter I Warfield Director 0.00 X 0 0 0 Stephen C Weiss Director 0.00 X 0 0 0 Chris Ouellette Director 0.00 X 0 0 0 Laura Fava Director 0.00 X 0 0 0 Patrick Livney CEO 40.00 X 325875 0 0 Kimberly J Magee Director of Finance 40.00 X 108899 0 0 Jeana Sweeney Director of Community Service 40.00 X 127712 0 0 562486 0 0 3 0 1 0 HumanFirst LLC 9600 Dewitt Drive Suite 1 Silver Spring MD 20910 Medical Research Consultant 147985 1 87150 2210555 2297705 Support Group Revenue 624100 618370 618370 618370 1191 1191 1010050 275222 734828 734828 3652094 618370 1191 734828 1879117 1879117 455820 227508 35767 192545 437106 321929 115177 13110 10733 2377 59715 37023 22692 237553 110278 127275 254090 105557 148533 130683 70887 59796 11737 11737 Direct Program Expenses 560707 536072 24635 4039638 3299104 107300 633234 1688854 1365878 7750 142000 3319 7415 45718 14386 7461 31332 1707384 1546625 23342 152567 266328 363888 289670 516455 X 1397594 112103 20120 918067 1417714 1030170 1707384 1546625 -387544 0 X X 0 1 X 1 0 X 1137223 896651 1114359 2361672 2297705 7807610 563260 911366 958215 944580 1628420 5005841 1700483 1808017 2072574 3306252 3926125 12813451 0 0 0 12813451 1290 1778 2165 2615 1191 9039 1290 1778 2165 2615 1191 9039 1701773 1809795 2074739 3308867 3927316 12822490 0.99930 0.99900 0.00070 0.00100 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 30300 30300 3268804 3299104 314955 78739 0 0 177898 232000 269312 314955 994165 1491248 18475 26250 30300 75025 44475 58000 67328 78739 248542 372813 45718 14386 31332 31332 3652094 0 3652094 0 3652094 4039638 0 4039638 0 4039638 0 0 0 0 0 0 0 0 0 0 Europe Targeting macrophagae activation in a model for CMT1X. 36990 Wire Transfer Cash Value 0 0 0 0 0 0 Part I, Line 2: The Association requires, by contract, periodic progress reports on the funded research. The contract also includes a full Research Plan with Budget and Deliverables. CMTA Golf Outing - Livney 499514 499514 125589 CMTA NY Event 185246 185246 39492 9 325290 325290 110141 1010050 1010050 275222 275222 734828 1 Columbia University PO Box 29789 New York NY 100879789 135598093 50000 To develop a generation of cell lines for CMT2E drug screening. National Center for Advancing Translational Science 31 Center Drive Bldg 31 Room 3B11 Bethseda MD 20892 90000 Assay Development of High Throughput Screen for CMTA Therapeutics PsychoGenics Inc 257 Park Avenue S 7th Floor New York NY 100107304 942963168 545534 To produce HET animals to start profiling of the CMT rat setting a base line of what a CMT1A and CMT2A rat looks like. Sage Labs Inc PO Box 122 Boyertown PA 19512 431050617 44178 To develop transgenic rat models with dominant mutation in the MFN2 gene. University of Iowa Dept of Neurology Carver College of Medicine 200 Hawkins Drive 2007 RCP Iowa City IA 522421053 426004813 17500 To maintain a database of patients afflicted with CMT in North America, "North America CMT Network".To Generate XBP-1 SW6 Schwann Cells. University of Iowa (Shy) Dept of Neurology Carver College of Medicine 200 Hawkins Drive 2007 RCP Iowa City IA 522421053 426004813 182160 To generate XBP-1 S16 Schwann Cells then insert CMT1B mutations Genzyme Corporation 5 The Mountain Road Framingham MA 01701 061047163 250000 To screen compound libraries for compounds that down-regulate PMP22 gene expression. Johns Hopkins University 12529 Collections Center Drive Chicago IL 60693 520595110 60185 To characterize and validate approaches that lead to efficient differentiation of Schwann cells from human induced pluirpotent stem cells. NY Stem Cell Foundation Inc 1995 Broadway Suite 600 New York NY 10023 202905531 38250 Produce CMT iPs cell lines. UB Foundation Services Inc PO Box 900 Buffalo NY 14226 160865182 125152 Validation of Primary CMT1A Drug Screening Hits in Myelinating Co-Cultures.Creation of a Mouse Model of CMT1B-T124M. University of Wisconsin Madison T201 Waisman Center 1500 Highland Ave Madison WI 53705 396006492 83790 Development of Assays for CMT1B. Test and validate candidate compounds stemming from CMT1A assays for lowering of PMP22. University of Miami PO Box 405803 Atlanta GA 30384 54648 Development of Mouse Model for CMT2A. Cedar Sinai Medical Center 8700 Beverly Blvd AHSP A8403 Los Angeles CA 90048 190330 Characterize and validate human IPSC-derived cellular modules of CMT2A. Genesis Project Inc 5244 North Bay Road Miami Beach FL 33140 465604473 6000 Provides analytic tools and services to genetics researchers. Renovo Neural 10000 Cedar Avenue Cleveland OH 44106 800185146 19650 Contract Research organization - provides histology work on CMT animals. Charles River Lab 251 Ballardvale Street Wilmington MA 01887 510188208 52736 Contract Research Organization - provides breeding services and maintenance of colonies of CMT animals for various disease states. Jackson Laboratory 610 Main Street Bar Harbor ME 04609 010211513 6290 Contract Research Organization - provides breeding services and maintenance of colonies of CMT animals for various disease states Part I, Line 2: The Association requires, by contract, periodic progress reports on the funded research. The contract also includes a full Research Plan with Budget and Deliverables. X 1 1 X 0 0 0 0 0 0 0 0 0 Patrick Livney CEO 325000 0 0 0 875 0 0 0 0 0 325875 0 0 0 Form 990, Part VI, Section B, line 11 From 990 will be reviewed by the Board of Directors. Form 990, Part VI, Section B, line 15a The organization's Board of Director's determines CEO's compensation annually, considering whatever factors and information it deems apporpriate. Form 990, Part VI, Section C, line 19 Upon request by mail, telephone, and/or email. Audited Financial Statements are avalable on the Organization's website. Form 990, Part XII, Line 2c The organization has not changed its selection and oversight process during the tax year. Form 990, Part XII, Line 2c The Board of Directors assumes oversight of the independent auditor and the annual audit.