2017-06-20T12:59:36-05:00 2016-12-31 363858249 Stern Cassello & Associates LLP 1 N LaSalle St Suite 1620 Chicago IL 60602 990 2016-01-01 222480896 Charcot-Marie-Tooth Association CHAR 6104999264 PO Box 105 Glenolden PA 19036 Amy Gray CEO 8006062682 2017-06-13 1 James R Stern P00831572 3122639100 2017-06-13 X 50.247.164.249 2017-06-13 17:09:40 CD P 6C9B1A35775087DBDB8A6D25ECA509C7F6C27838 3DBBE3AB308D8E4EFED7A5E05CDCB98F3D99DE58 2016 2018-03-14 21:41:22Z Amy Gray PO Box 105 Glenolden PA 19036 3410875 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 8 0 695 0 2297705 1642776 618370 783564 1191 695 734828 749994 3652094 3177029 1879117 1392292 0 0 965751 900907 0 0 319238 1194770 1114998 4039638 3408197 -387544 -231168 1546625 1191444 516455 392442 1030170 799002 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 1724733 1392292 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). 118413 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. 180656 783564 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. 823900 Allocated Program Services Expenses such as Salaries, Benefits, Occupancy Expenses, and Management Services. 823900 2847702 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 1 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 19 0 1 8 1 0 0 0 0 0 0 0 0 X 14 14 1 0 1 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 0 0 PA X X Kimberly Magee 6104999264 P O Box 105 Glenolden PA 19036 Herbert Beron Secretary 0.00 X X 0 0 0 Stephen D Blevit Director 0.00 X 0 0 0 Gilles Bouchard Chairman 0.00 X X 0 0 0 Laura Fava 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 Chris Ouellette Director 0.00 X 0 0 0 Phyllis Sanders Director 0.00 X 0 0 0 Dr Steven Scherer Director 0.00 X 0 0 0 Dr Michael Shy Director 0.00 X 0 0 0 Dr John Svaren Director 0.00 X 0 0 0 Dr Peter I Warfield Director 0.00 X 0 0 0 Dr Lawrence Wrabitz Director 0.00 X 0 0 0 Patrick Livney CEO 40.00 X 325000 0 0 Kimberly J Magee Director of Finance 40.00 X 82500 0 0 407500 0 0 1 0 1 0 HumanFirst Therapeutics LLC 9600 Dewitt Drive Suite 1 Silver Spring MD 20910 Medical Research Consultant 224965 1 78003 1564773 1642776 Support Group Revenue 624100 783564 783564 783564 695 695 983840 233846 749994 749994 3177029 783564 695 749994 1392292 1392292 538425 405938 26337 106150 316177 231561 84616 46305 40551 1356 4398 98967 51585 47382 660 660 223262 28992 194270 7436 7436 11858 11858 Direct Program Expenses 772815 696783 76032 3408197 2847702 241257 319238 1365878 1002637 142000 160544 7415 8789 45718 26244 31332 19474 1546625 1191444 152567 28554 363888 363888 516455 392442 X 112103 -47139 918067 846141 1030170 799002 1546625 1191444 -231168 0 X X 0 1 X 1 0 X 896651 1114359 2361672 2297705 1642776 8313163 911366 958215 944580 1628420 1767404 6209985 1808017 2072574 3306252 3926125 3410180 14523148 0 0 0 14523148 1778 2165 2615 1191 695 8444 1778 2165 2615 1191 695 8444 1809795 2074739 3308867 3927316 3410875 14531592 0.99940 0.99930 0.00060 0.00070 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 31725 31725 2847702 2879427 293971 73493 0 0 232000 269312 314955 293971 1110238 1665357 18475 26250 30300 31725 106750 58000 67328 78739 73493 277560 416340 45718 26244 19474 19474 3177029 0 3177029 0 3177029 3408197 0 3408197 0 3408197 1 0 0 0 0 0 0 0 0 0 Europe High Dosage Oprozomib studies in CMTA1A rats. 13015 Wire Transfer Cash Value Europe Gene therapy approach to treat CMT4C neuropathy. 27751 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 399074 399074 136303 CMTA NY Event 254021 254021 46559 6 330745 330745 50983 983840 983840 233845 233845 749995 1 Johns Hopkins University 12529 Collections Center Drive Chicago IL 60693 520595110 60113 To characterize and validate approaches that lead to efficient differentiation of Schwann cells from human induced pluirpotent stem cells. 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 UB Foundation Services Inc PO Box 900 Buffalo NY 14226 160865182 111430 Validation of Primary CMT1A Drug Screening Hits in Myelinating Co-Cultures.Creation of a Mouse Model of CMT1B-T124M. University of Iowa-Carver College of Medicine 200 Hawkins Drive 2007 RCP Iowa City IA 52242 426004813 150080 To generate XBP-1 SW6 Schwann cells and maintian the CMT database. University of Miami PO Box 405803 Atlanta GA 30384 590624458 20000 Assay Development for CMT2A. University of Missouri-Columbia 115 Business Loop 70W Mizzou N Rm 501 Columbia MO 65211 436003859 35382 Developing a minimally invasive Biomarker for CMT;Neurofilament levels in CMT2E mouse model. University of Pennsylvania PO Box 785541 Philadelpia PA 19178 231352685 50861 Development of mouse model for CMT2A University of Wisconsin Madison 21 N park Street Suite 6401 Madison WI 53715 396006492 44335 Therapy development for CMT1A. 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 0 0 0 0 0 0 325000 0 0 0 Form 990, Part VI, Section A, line 2 Gilles Bouchard (Chairman of the Board) and Chris Ouellette (Member of the Board) are brothers-in-law. Form 990, Part VI, Section A, line 4 The By-Laws were changed to officially incorporate the Conflict of Interest Policy. In addition, four physicians were added to the Board as Voting Members. However, they do not vote on Research spending. Form 990, Part VI, Section A, line 8b The Finance Committee does not keep minutes of its meetings. Form 990, Part VI, Section B, line 11b Form 990 will be reviewed by the Board of Directors. Form 990, Part VI, Section B, line 12c The organization had a workshop for all Board members on the Conflict of Interest Policy. The physicians on the Board disclose all pertinent research work, and do not vote on research spending. 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 appropriate. 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.