2024-11-13T06:22:48-06:00 2024-06-30 871353108 EISNER ADVISORY GROUP LLC 130 NORTH 18TH STREET SUITE 3000 PHILADELPHIA PA 191032757 990 2023-07-01 473601782 THE FTD DISORDERS REGISTRY LLC FTDD 2675147221 2700 HORIZON DRIVE 120 KING OF PRUSSIA PA 19406 SUSAN L-J DICKINSON MANAGING MEMBER 2675147221 2024-11-06 1 0 HELEN M MARTIN P01330899 2158818800 2023 2024-10-15 13:58:12Z SUSAN L-J DICKINSON 2700 HORIZON DRIVE 120 KING OF PRUSSIA PA 19406 1031597 0 X WWW.FTDREGISTRY.ORG X LLC 2015 DE PROVIDE A PATIENT REGISTRY FOR THOSE AFFLICTED BY FTD, A DEVASTATING NEURODEGENERATIVE DISEASE. 2 0 5 0 0 0 1579800 946443 0 0 20982 85154 0 0 1600782 1031597 0 0 0 0 463809 537814 0 0 0 295200 417479 759009 955293 841773 76304 2043499 2410986 116119 407302 1927380 2003684 X THE REGISTRY'S MISSION IS TO FACILITATE RESEARCH AND ADVANCE RESEARCH TO ACCELERATE TREATMENT DEVELOPMENT FOR ALL TYPES OF FTD, A DEVASTATING NEURODEGENERATIVE DISEASE THAT STRIKES PEOPLE IN THE PRIME OF LIFE AND FOR WHICH, CURRENTLY, THERE IS NO CURE. 0 0 798934 30000 THE GOALS OF THE REGISTRY ARE TO - EMPOWER THE COMMUNITY OF CAREGIVERS, FAMILY MEMBERS, AND PEOPLE DIAGNOSED WITH FTD - FACILITATE ENROLLMENT FOR FTD CLINICAL RESEARCH AS A CENTRALIZED, INTERNATIONAL DATABASE AND COMMUNICATION HUB- INFORM THE FTD COMMUNITY ON RESEARCH AND PARTICIPATION OPPORTUNITIES AS A TRUSTED, NEUTRAL, SCIENCE-BASED NON-PROFIT VOICE- IMPROVE THE UNDERSTANDING OF FTD AND ITS IMPACT THROUGH SURVEY-BASED, LONGITUDINAL RESEARCH WITH PERSONS DIAGNOSED, FAMILY MEMBERS, AND CAREGIVERS - ENABLE INCLUSIVE AND SECURE RESEARCH DESIGNS AS A RESEARCH PARTNER FOR REMOTE DATA COLLECTION (CONTINUED ON SCHEDULE O)- LEVERAGE RESOURCES AS A PARTNER FOR ALL STAKEHOLDERS - ACADEMIC RESEARCHERS, NON-PROFITS, GOVERNMENT, AND INDUSTRY - WHO SHARE A COMMITMENT TO IMPROVING THE QUALITY OF LIFE OF THOSE AFFECTED BY FTD 798934 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 X 9 0 1 5 1 0 0 0 0 0 0 0 0 0 0 0 0 X 2 0 0 1 0 0 1 1 0 1 1 0 0 1 1 1 1 1 1 0 0 0 X MITCH APPLESON 2675147221 2700 HORIZON DRIVE 120 KING OF PRUSSIA PA 19406 SUSAN DICKINSON DIRECTOR-AFTD MEMBER REPRESENTATIVE 4.00 36.00 X X 0 299574 27277 RODNEY PEARLMAN THRU 83123 DIRECTOR-BLUEFIELD MEMBER REPRESENTATIVE 4.00 40.00 X 0 343000 77118 LAURA MITIC EFF 9123 DIRECTOR-BLUEFIELD MEMBER REPRESENTATIVE 4.00 20.00 X 0 101728 0 PENNY DACKS PRESIDENT 10.00 30.00 X 0 215668 15410 CHRISTINE STEVENS CFO (THRU 9/24) 4.00 36.00 X 0 182806 25570 MITCH APPLESON COO AND SECRETARY 2.00 38.00 X 0 239433 30583 CARRIE MILLIARD REGISTRY DIRECTOR 25.00 15.00 X 76816 64950 25561 76816 1447159 201519 0 0 1 0 0 500000 223330 223113 946443 85154 85154 1031597 0 0 85154 X 443464 428930 14534 59073 57657 1416 35277 34168 1109 190122 74846 115276 6094 6094 481 252 229 181254 176550 4704 13448 6766 6682 2218 2218 11429 11429 6250 6250 TELECOMMUNICATIONS AND 3591 1391 2200 RECRUITING EXPENSES 1184 402 782 BANK AND CREDIT CARD PR 811 27 784 EDUCATION/TRAINING 422 422 175 175 955293 798934 156359 0 269495 300452 1370986 1706140 276330 60805 1188 6162 348855 11428 125500 337427 2043499 2410986 116119 407302 116119 407302 X 1927380 2003684 1927380 2003684 2043499 2410986 76304 0 X 0 1 X 1 0 X 543370 437183 507075 1579801 946443 4013872 543370 437183 507075 1579801 946443 4013872 227594 3786278 214 32 42 20982 85154 106424 4120296 0.91890 0.88150 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 348855 11428 337427 337427 X PART X, LINE 2: THE INTERNAL REVENUE SERVICE HAS CLASSIFIED THE ORGANIZATION AS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES RECOGNIZED IN AN ENTERPRISE'S FINANCIAL STATEMENTS. MANAGEMENT HAS ANALYZED THE TAX POSITIONS TAKEN BY THE ORGANIZATION, AND HAS CONCLUDED THAT AS OF JUNE 30, 2024 AND 2023, THERE ARE NO UNCERTAIN TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN THAT WOULD REQUIRE RECOGNITION OF A LIABILITY OR DISCLOSURE IN THE CONSOLIDATED FINANCIAL STATEMENTS. THE ORGANIZATION RECOGNIZES ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY. THERE WERE NO INCOME TAX RELATED INTEREST OR PENALTIES RECORDED FOR EITHER OF THE YEARS ENDED JUNE 30, 2024 OR 2023. X X 0 0 0 0 0 0 0 0 0 RODNEY PEARLMAN THRU 83123 DIRECTOR-BLUEFIELD MEMBER REPRESENTA 0 343000 0 0 0 0 0 42000 0 35118 0 420118 0 0 SUSAN DICKINSON DIRECTOR-AFTD MEMBER REPRESENTATIVE 0 299208 0 0 0 366 0 8935 0 18342 0 326851 0 0 MITCH APPLESON COO AND SECRETARY 0 239373 0 0 0 60 0 7478 0 23105 0 270016 0 0 PENNY DACKS PRESIDENT 0 215608 0 0 0 60 0 6462 0 8948 0 231078 0 0 CHRISTINE STEVENS CFO (THRU 9/24) 0 182577 0 0 0 229 0 5460 0 20110 0 208376 0 0 CARRIE MILLIARD REGISTRY DIRECTOR 76816 64912 0 0 0 38 2316 1821 17226 4198 96358 70969 0 0 FORM 990, PART V, LINE 2B: THE ORGANIZATION'S PAYROLL IS PROCESSED AND PAID BY A RELATED ORGANIZATION, THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION ("AFTD"). ALL EMPLOYMENT TAX RETURNS AND W-2'S ARE FILED BY THE AFTD AND REIMBURSED BY THE ORGANIZATION. FORM 990, PART VI, SECTION A, LINE 3 THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION IS THE LLC'S MANAGING MEMBER, 50% INTEREST, CO-FOUNDER: THE REGISTRY HAS A CONTRACT WITH AFTD TO PROVIDE DAY-TO-DAY OVERSIGHT AND OPERATIONS FOR THE REGISTRY. DURING THE YEAR ENDED JUNE 30, 2024, THE REGISTRY INCURRED $166,500 RELATED TO SERVICES RENDERED. AFTD CONTRIBUTED $250,000 TO THE REGISTRY DURING THE YEAR ENDED JUNE 30, 2024. SUSAN DICKINSON IS THE CHIEF EXECUTIVE OFFICER OF AFTD AND AS SUCH WILL RETAIN ULTIMATE RESPONSIBILITY FOR MANAGEMENT OF THE LLC AND FOR ENSURING THAT THE AFTD BOARD OF DIRECTORS IS INFORMED ON A REGULAR BASIS. FORM 990, PART VI, SECTION A, LINE 6 THE FTD DISORDERS REGISTRY LLC (THE REGISTRY) WAS FORMED AS A DELAWARE LIMITED LIABILITY COMPANY IN 2015 BY TWO FOUNDING MEMBERS: (1) THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION AND (2) THE BLUEFIELD PROJECT TO CURE FRONTOTEMPORAL DEMENTIA, BOTH OF WHICH ARE 501(C)(3) NONPROFIT EXEMPT ORGANIZATIONS. FORM 990, PART VI, SECTION A, LINE 7A EACH MEMBER DELEGATES VOTING RIGHTS TO ONE APPOINTED REPRESENTATIVE. SUSAN DICKINSON HAS VOTING POWER FOR AFTD AND LAURA MITIC HAS VOTING POWER FOR BLUEFIELD. FORM 990, PART VI, SECTION B, LINE 11B FORM 990 IS PREPARED BY AN OUTSIDE TAX PROFESSIONAL. THE FORM IS THEN REVIEWED BY ALL MEMBERS OF THE ORGANIZATION'S VOTING BODY. AFTER A FULL REVIEW, THE FINAL VERSION OF THE TAX RETURN IS PROVIDED TO ALL MEMBERS OF THE ORGANIZATION'S VOTING BODY. A REPRESENTATIVE OF THE MANAGING MEMBER AUTHORIZES THE FINAL FORM 990 WHICH IS THEN E-FILED WITH THE INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C MEMBERS OF THE GOVERNING BODY REVIEW ALL POTENTIAL CONFLICTS OF INTEREST AT LEAST ANNUALLY. ALL MEMBERS ARE REQUIRED TO DISCLOSE POTENTIAL CONFLICTS AND ANY RELATED PARTY AFFILIATIONS. LOANS BETWEEN THE ORGANIZATION AND MEMBERS OF MANAGEMENT ARE STRICTLY PROHIBITED. THE ORGANIZATION SEEKS FULL TRANSPARENCY ON ALL RELATIONSHIPS. ANY POTENTIAL CONFLICTS (IN FACT OR APPEARANCE) ARE DISCUSSED OPENLY AND RESOLVED IN ACCORDANCE WITH THE ORGANIZATION'S POLICIES AND PROCEDURES. FORM 990, PART VI, SECTION C, LINE 19 ALL OF THE ORGANIZATION'S GOVERNING DOCUMENTS, FINANCIAL STATEMENTS AND OTHER LEGAL FILINGS ARE MAINTAINED IN A SECURE ENVIRONMENT AND HELD AVAILABLE FOR INSPECTION BY TAX AUTHORITIES AND THE GENERAL PUBLIC. TAX RETURNS ARE POSTED ANNUALLY TO WWW.GUIDESTAR.ORG (WHERE THEY ARE AVAILABLE FOR VIEWING AS ELECTRONIC COPIES) AND ARE ALSO AVAILABLE FOR A PHYSICAL INSPECTION AT THE ORGANIZATION'S OFFICE IN KING OF PRUSSIA, PA. FORM 990, PART IX, LINE 11G OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 74,846. MANAGEMENT AND GENERAL EXPENSES 115,276. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 190,122. BLUEFIELD PROJECT TO CURE FROTOTEMPORAL DEGENERATION 637 CAROLINA STREET SAN FRANCISCO CA 94107 272444495 MEDICAL RESEARCH AND FUNDING CA 501(C)(3) 170 (B)(1)(A)(VI) N/A 0 THE ASSN FOR FRONTOTEMPORAL DEGENERATION 2700 HORIZON DRIVE KING OF PRUSSIA PA 19406 412073220 MEDICAL RESEARCH AND FUNDING PA 501(C)(3) 170 (B)(1)(A)(VI) N/A 0 0 0 1 0 0 0 0 0 0 0 0 0 1 1 1 1 0 0 0