2022-08-04T08:24:44-05:00 2021-12-31 232896692 BBD LLP 1835 MARKET STREET 3RD FLOOR PHILADELPHIA PA 19103 990 2021-01-01 222480896 CHARCOT-MARIE-TOOTH ASSOCIATION CHAR 6104272971 8 S GARFIELD AVE GLENOLDEN PA 19036 AMY GRAY CHIEF EXECUTIVE OFFICER 6104272971 2022-08-04 1 AMY GRAY XXX-XX-XXXX JENNIFER SOLOT P00749373 2155677770 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z AMY GRAY 8 S GARFIELD AVE GLENOLDEN PA 19036 5736952 0 X WWW.CMTAUSA.ORG X 1983 PA FIGHTING TO END CHARCOT-MARIE-TOOTH DISEASE. 14 14 12 150 0 0 5201933 5161270 0 0 23718 7409 6691 0 5232342 5168679 2379690 2546913 0 0 732822 794012 0 0 182677 791238 1498134 3903750 4839059 1328592 329620 5686656 6028701 0 0 5686656 6028701 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 3368302 2546913 CMTA 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. 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. 810440 CMTA ORGANIZES AND CONDUCTS SUPPORT GROUPS, CONFERENCES AND EDUCATIONAL WEBINARS FOR PATIENTS, THEIR FAMILIES AND MEDICAL PRACTITIONERS TO SHARE KNOWLEDGE AND PROMOTE AWARENESS OF CHARCOT-MARIE-TOOTH DISEASE. CMTA ALSO PUBLISHES A BI-MONTHLY NEWSLETTER AND OTHER EDUCATIONAL PUBLICATIONS WHICH ARE AVAILABLE TO THE PUBLIC. CMTA ALSO MAINTAINS A WEBSITE FOR PATIENTS, THEIR FAMILIES AND MEDICAL PRACTITIONERS TO ASSIST IN UNDERSTANDING AND TREATING CHARCOT-MARIE-TOOTH DISEASE. 4178742 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 15 0 1 12 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 14 14 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL CA CO CT DC FL IL KS ME MD MA MI MN MS NV NH NJ NM NY NC ND OH OK OR PA SC TN UT VA WA WV WI X X THE ORGANIZATION 6104272971 8 S GARFIELD AVE GLENOLDEN PA 19036 GILLES BOUCHARD CHAIRMAN 0.00 X X 0 0 0 GARY GASPER TREASURER 0.00 X X 0 0 0 HERBERT BERON SECRETARY 0.00 X X 0 0 0 DAN CHAMBY DIRECTOR 0.00 X 0 0 0 DAVID COLDIRON DIRECTOR 0.00 X 0 0 0 DR THOMAS DUBENSKY DIRECTOR 0.00 X 0 0 0 LAURA FAVA DIRECTOR 0.00 X 0 0 0 PETE FOLEY DIRECTOR 0.00 X 0 0 0 ALAN KOROWITZ DIRECTOR 0.00 X 0 0 0 DAVID NORCOM 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 KEVIN SAMI DIRECTOR 0.00 X 0 0 0 PHYLLIS SANDERS DIRECTOR 0.00 X 0 0 0 AMY GRAY CHIEF EXECUTIVE OFFICER 40.00 X 263267 0 8953 KIMBERLY MAGEE DIRECTOR OF FINANCE 40.00 X 86272 0 3284 JEANA SWEENEY CHIEF ENGAGMENT & GIFT OFFICER 40.00 X 111681 0 4128 461220 0 16365 2 0 1 0 HUMANFIRST THERAPEUTICS 9600 DEWITT DRIVE SUITE 1 SILVER SPRING MD 20910 RESEARCH CONSULTANT 262994 1 407171 339445 4414654 463370 5161270 9495 9495 449927 452013 -2086 -2086 -2086 116260 407171 116260 0 5168679 0 0 7409 X 2238499 2238499 13000 13000 295414 295414 361776 244643 72000 45133 364325 325287 3393 35645 3238 2267 32 939 13716 11430 970 1316 50957 40276 5093 5588 32616 32616 30300 30300 800849 459723 324950 16176 98585 81642 7510 9433 250903 150258 45732 54913 169986 144488 16999 8499 2689 1728 961 CAMP FEES 96583 96583 EVENT COSTS 62430 58983 3447 MISCELLANEOUS 5542 3954 1588 RETURN OF PRIOR YEAR GR -52349 -52349 4839059 4178742 477640 182677 3573013 3884618 1431516 682127 2144083 5686656 6028701 0 0 X 1041770 552215 4644886 5476486 5686656 6028701 5686656 6028701 329620 12425 0 X X 0 1 X 1 0 X 2088880 4949414 4695526 5201933 5161270 22097023 494923 494923 2583803 4949414 4695526 5201933 5161270 22591946 2313627 484980 1221523 509845 4529975 72837 355637 428474 2386464 840617 1221523 509845 4958449 17633497 26745 42833 24592 9495 103665 26745 42833 24592 9495 103665 118745 188896 83315 116260 507216 2583803 5094904 4927255 5309840 5287025 23202827 0.76000 0.76870 0.00450 0.00440 X SCHEDULE A, PART III, LINE 12, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2018 AMOUNT: $ 8,704. 2019 AMOUNT: $ 13,357. 2020 AMOUNT: $ 6,691. FUNDRAISING REVENUE - 2018 AMOUNT: $ 110,041. 2019 AMOUNT: $ 175,539. 2020 AMOUNT: $ 76,624. 2021 AMOUNT: $ 116,260. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 30300 30300 4626082 4656382 382819 95705 0 0 296628 341924 337394 382819 1358765 2038148 30171 30300 30000 30300 120771 74157 85481 84349 95705 339692 509538 0 X 5297364 12425 12425 5284939 -116260 -116260 5168679 4955319 0 4955319 -116260 -116260 4839059 PART X, LINE 2: ACCOUNTING STANDARDS REQUIRE ENTITIES TO EVALUATE, MEASURE, RECOGNIZE AND DISCLOSE ANY UNCERTAIN INCOME TAX POSITIONS TAKEN ON THEIR TAX RETURNS. ACCOUNTING STANDARDS PRESCRIBE A MINIMUM THRESHOLD THAT A TAX POSITION IS REQUIRED TO MEET IN ORDER TO BE RECOGNIZED IN THE FINANCIAL STATEMENTS. THE ORGANIZATION BELIEVES THAT IT HAD NO UNCERTAIN TAX POSITIONS. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES -116,260. PART XII, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES -116,260. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANT MAKING RESEARCH GRANTS 295414 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 FUNDRAISING NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 FUNDRAISING EAST ASIA AND THE PACIFIC 0 0 FUNDRAISING 0 0 0 0 0 0 295414 0 295414 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 142753 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 124729 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM CMT RESEARCH 16000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) CMT RESEARCH 11932 WIRE TRANSFER 0 4 0 0 0 0 0 0 PART I, LINE 2: CMTA REQUIRES BY CONTRACT PERIOD PROGRESS REPORTS ON THE FUNDED RESEARCH. ITS CONTRACTS ALSO INCLUDE A FULL RESEARCH PLAN WITH BUDGETS AND DELIVERABLES. PART III ACCOUNTING METHOD: CYCLE 4 CMT 313738 226020 87718 87718 OXFORD FUNATHON 73463 57649 15814 15814 3 136230 123502 12728 12728 523431 407171 116260 116260 116260 0 1 CLEVELAND CLINICLERNER RESEARCH INST PO BOX 931652 CLEVELAND OH 44193 912153073 501(C)(3) 0 25968 CMT RESEARCH CHARLES RIVER LABORATORIES 251 BALLARDVALE ST WILMINGTON MA 01887 061397316 0 94713 CMT RESEARCH ENVIGO 3565 PAYSPHERE CIRCLE CHICAGO IL 60674 841753840 0 44389 CMT RESEARCH JACKSON LABORATORY (INCLUDES JAX) 600 MAIN STREET BAR HARBOR ME 04609 102115130 501(C)(3) 0 66935 CMT RESEARCH NEW YORK STEM CELL FOUNDATION INC 619 W 54TH STREET NEW YORK NY 10019 202905531 501(C)(3) 0 153000 CMT RESEARCH OHIO STATE UNIVERSITY 1960 KENNY RD COLUMBUS OH 43210 316025986 0 128018 CMT RESEARCH PSYCHOGENICS INC 257 PARK AVE S 7TH FL NEW YORK NY 10010 942963168 0 361414 CMT RESEARCH RESEARCH FOUNDATION FOR STATE UNIV OF NY PO BOX 9 ALBANY NY 12201 141368361 501(C)(3) 0 109375 CMT RESEARCH TAYSHA GENE THERAPIES 3000 PEGASUS PARK DRIVE SUITE 1430 DALLAS TX 75247 843199512 0 55000 CMT RESEARCH THE GENESIS PROJECT INC 5244 N BAY RD MIAMI BEACH FL 33140 465604473 501(C)(3) 0 25000 CMT RESEARCH UCSF PO BOX 748872 LOS ANGELES CA 90074 946036493 501(C)(3) 0 265704 CMT RESEARCH UNIV OF IA-CARVER 200 HAWKINS DR 2007 RCF IOWA CITY IA 52242 426004813 501(C)(3) 0 602543 CMT RESEARCH UNIV OF IL 28395 NETWORK PL CHICAGO IL 60673 376000511 501(C)(3) 0 24164 CMT RESEARCH UNIV OF MIAMI PO BOX 405803 ATLANTA GA 30384 590624458 501(C)(3) 0 147687 CMT RESEARCH UNIV OF PENN 3400 SPRUCE STREET PHILADELPHIA PA 19104 231352685 0 21328 CMT RESEARCH UNIV OF ROCHESTER 910 GENESEE ST ROCHESTER NY 14611 160743209 501(C)(3) 0 33394 CMT RESEARCH UNIV OF WI-MADISON 21 N PARK ST STE 6401 MADISON WI 53715 396006492 501(C)(3) 0 74444 CMT RESEARCH 11 6 FELLOWSHIPS 25 13000 PART I, LINE 2: CMTA REQUIRES BY CONTRACT PERIOD PROGRESS REPORTS ON THE FUNDED RESEARCH. ITS CONTRACTS ALSO INCLUDE A FULL RESEARCH PLAN WITH BUDGETS AND DELIVERABLES. X 1 0 X 0 0 0 0 0 0 0 0 0 AMY GRAY CHIEF EXECUTIVE OFFICER 244067 0 19200 0 0 0 7622 0 1331 0 272220 0 0 0 X 5 463370 FMV 0 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 FAMILY RELATIONSHIP AMONG BOARD MEMBERS: GILLES BOUCHARD, CHAIRMAN OF THE BOARD, AND CHRIS OUELLETTE, BOARD MEMBER, ARE BROTHERS-IN-LAW. FORM 990, PART VI, SECTION B, LINE 11B GOVERNING BODY REVIEW OF FORM 990: FORM 990 WILL BE REVIEWED BY THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION B, LINE 12C MONITORING AND ENFORCEMENT OF THE CONFLICT OF INTEREST POLICY: THE ORGANIZATION HAD A WORKSHOP FOR ALL BOARD MEMBERS ON THE CONFLICT OF INTEREST POLICY ANNUALLY. THE PHYSICIANS ON THE BOARD DISCLOSE ALL PERTINENT RESEARCH WORK, AND DO NOT VOTE ON RESEARCH SPENDING. THE BOARD CHAIRMAN AND CEO REVIEW AND MONITOR THE CONFLICT OF INTEREST DISCLOSURES. IF A CONFLICT OF INTEREST IS IDENTIFIED, THE RESPONSIBLE PERSON SHALL REFRAIN FROM ANY ACTION THAT MAY AFFECT CMTA'S PARTICIPATION IN SUCH CONTRACT OR TRANSACTION. FORM 990, PART VI, SECTION B, LINE 15 PROCESS FOR DETERMINING COMPENSATION: THE ORGANIZATION'S BOARD OF DIRECTORS DETERMINES THE CEO'S COMPENSATION ANNUALLY, CONSIDERING WHATEVER FACTORS AND INFORMATION IT DEEMS APPROPRIATE. FORM 990, PART VI, SECTION C, LINE 19 AVAILABILITY OF OTHER DOCUMENTS: UPON REQUEST BY MAIL, TELEPHONE, AND/OR EMAIL. AUDITED FINANCIAL STATEMENTS ARE AVAILABLE ON THE CMTA'S WEBSITE. FORM 990, PART IX, LINE 11G OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 459,723. MANAGEMENT AND GENERAL EXPENSES 324,950. FUNDRAISING EXPENSES 16,176. TOTAL EXPENSES 800,849. FORM 990, PART XII, LINE 1: THE FINANCIAL STATEMENTS HAVE BEEN PREPARED ON THE MODIFIED CASH BASIS OF ACCOUNTING, A COMPREHENSIVE BASIS OF ACCOUNTING OTHER THAN GENERALLY ACCEPTED ACCOUNTING PRINCIPLES. UNDER THE CASH BASIS, REVENUE IS RECOGNIZED WHEN RECEIVED RATHER THAN WHEN EARNED AND EXPENSES ARE RECOGNIZED WHEN PAID RATHER THAN WHEN THE OBLIGATION IS INCURRED. THE CASH BASIS HAS BEEN MODIFIED BY THE RECORDING OF INVESTMENTS.