2025-04-15T07:34:41-05:00 2024-06-30 203968236 JAMES A GEORGE PC 300 BRICKSTONE SQUARE SUITE 201 ANDOVER MA 01810 990 2023-07-01 131912877 NATIONAL TAY-SACHS & ALLIED DISEASES ASS NATI 6172774463 2001 BEACON ST 204 BRIGHTON MA 02135 KATHLEEN M FLYNN CHIEF EXECUTIVE OFFICER 6172774463 2025-04-02 1 JAMES A GEORGE CPA CVA JD P00659906 2023 2025-03-06 01:10:19Z KATHLEEN M FLYNN 2001 BEACON ST BRIGHTON MA 02135 1376815 0 X WWW.NTSAD.ORG X 1957 MA TO DETECT, PREVENT AND RESEARCH TAY-SACHS AND ALLIED DISEASES. THE ORGANIZATION ALSO PROVIDES SERVICES TO FAMILIES AND CHILDREN THAT ARE LIVING WITH THE DISEASES. 25 25 6 0 0 0 445566 819736 554854 273543 37785 73557 139287 209979 1177492 1376815 315792 0 0 0 584245 629485 0 0 281387 607769 714943 1507806 1344428 -330314 32387 2868442 2853352 95923 47297 2772519 2806055 NTSAD LEADS THE WORLDWIDE FIGHT TO TREAT AND CURE TAY-SACHS, CANAVAN, GM1, AND SANDHOFF DISEASES BY DRIVING RESEARCH, FORGING COLLABORATIION, AND FOSTERING COMMUNITY, SUPPORTING FAMILIES IS THE CENTER OF EVERYTHING WE DO. 0 0 471414 273543 RESEARCH: MAKES GRANTS TO SCIENTISTS THROUGH A REQUEST FOR PROPOSAL PROCESS. THESE GRANTS ARE FOR RESEARCH PROJECTS THAT INVOLVE BASIC RESEARCH, TRANSLATIONAL STUDIES OR CLINICAL STUDIES IN THE AREAS OF NEURODEGENERATIVE DISORDERS AFFECTION THE CENTRAL NERVOUS SYSTEM. 433405 0 FAMILY SERVICES: PROVIDES SUPPORT TO, AND ADVOCATE FOR, NEWLY DIAGNOSED FAMILIES AND INDIVIDUALS, FAMILIES AND CAREGIVERS ACTIVELY CARING FOR AN AFFECTED LOVED ONE WITH TAY-SACHS, CANAVAN, GM1, OR SANDHOFF DISEASE, AND BEREAVED FAMILIES AND INDIVIDUALS. CONNECT PATIENT COMMUNITY WITH RESEARCHERS AND INDUSTRY PARTNERS. FACILITATE PRIVIATE SOCIAL MEDIA GROUP FOR AFFECTED INDIVIDUALS, FAMILIES AND CAREGIVERS. 92122 EDUCATION: DEVELOP AND DISSEMINATE RESOURCES ON TAY-SACHS, CANAVAN, GM1, AND SANDHOFF DISEASES TO AFFECTED INDIVIDUALS, FAMILIES, AND CAREGIVERS. RESPOND TO INQUIRIES. HOST AN ANNUAL FAMILY CONFERENCE THAT INCLUDES FAMILY INTERACTION, SUPPORT SESSIONS, AND RESEARCH UPDATES BY CLINICIANS, RESEARCHERS, AND INDUSTRY LEADERS, CONSULT WITH MEMBERS OF THE SCIENTIFIC COMMUNITY. 996941 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 0 0 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 0 0 0 0 1 7 0 1 6 1 0 0 0 0 0 0 0 0 0 0 X 25 25 0 0 0 0 0 0 0 1 1 0 0 1 1 1 0 1 1 1 0 0 MA X X THE ORGANIZATION 6172774463 2001 BEACON ST 204 BRIGHTON MA 02135 ORALEA MARQUARDT PRESIDENT 2.50 X X 0 0 0 SARA SCAPAROTTI VICE PRESIDENT 2.50 X X 0 0 0 MICHAEL RICHARDS TREASURER 2.50 X X 0 0 0 LISAJANE ROMER SECRETARY 2.50 X X 0 0 0 LAUREN CELANO DIRECTOR 2.50 X 0 0 0 CHRIS CHAPMAN DIRECTOR 2.50 X 0 0 0 GERRY COX DIRECTOR 2.50 X 0 0 0 BONNIE DAVIS DIRECTOR 2.50 X 0 0 0 AMBER FRANZEN DIRECTOR 2.50 X 0 0 0 STACI KALLISH DIRECTOR 2.50 X 0 0 0 JONATHAN KATZ DIRECTOR 2.50 X 0 0 0 MARTHA KLEINMAN DIRECTOR 2.50 X 0 0 0 DAWN LANEY DIRECTOR 2.50 X 0 0 0 JONATHAN LAWRENCE DIRECTOR 2.50 X 0 0 0 BLYTH LORD DIRECTOR 2.50 X 0 0 0 JAMIE RING DIRECTOR 2.50 X 0 0 0 SUSAN RODEN DIRECTOR 2.50 X 0 0 0 ABBY ROGERS DIRECTOR 2.50 X 0 0 0 DEBORAH SANDERS DIRECTOR 2.50 X 0 0 0 SARA SCAPAROTTI DIRECTOR 2.50 X 0 0 0 CARLA STECKMAN DIRECTOR 2.50 X 0 0 0 KATHLEEN FLYNN CEO 40.00 X 160200 0 0 160200 0 0 1 0 1 0 0 819736 819736 ANNUAL CONFERENCE 541700 273543 273543 273543 73557 73557 209979 0 209979 209979 1376815 273543 0 283536 541830 352190 43346 146294 44963 29226 3597 12140 42692 27750 3415 11527 19579 12726 1567 5286 49655 48755 206 694 2814 1830 225 759 14392 9354 1151 3887 41520 19200 2363 19957 119170 110314 2787 6069 157702 157702 7921 5149 634 2138 GRANT PAYMENTS 184686 184686 FUNDRAISING 64994 8277 341 56376 SCHOLARSHIP NETWORK 12000 12000 PRINTING AND REPRODUCTI 9287 967 88 8232 31223 16815 6380 8028 1344428 996941 66100 281387 2835335 2819938 18900 26025 83717 83717 0 0 14207 7389 2868442 2853352 81117 39908 14806 7389 95923 47297 X 1186751 1056782 1585768 1749273 2772519 2806055 2868442 2853352 32387 649 500 0 X 0 0 0 X 986319 1102890 896289 1139707 1029715 5154920 986319 1102890 896289 1139707 1029715 5154920 5154920 17354 1264 1411 37785 73557 131371 5286291 273543 0.97510 0.98430 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 83717 83717 0 0 LEASE LIABILITY 7389 7389 X PART X, LINE 2: THE ORGANIZATION IS ORGANIZED AND OPERATED EXCLUSIVELY FOR CHARITABLE AND EDUCATIONAL PURPOSES. INCOME RELATED TO THESE PURPOSES IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES UNDER THE PROVISIONS OF SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. UNRELATED BUSINESS INCOME WOULD BE TAXABLE ACCORDING TO APPLICABLE INTERNAL REVENUE CODE SECTIONS. THE ORGANIZATION REGULARLY REVIEWS AND EVALUATES ITS TAX POSITIONS TAKEN IN ITS FILED RETURNS AND RECOGNIZES THE BENEFIT FROM A TAX POSITION ONLY IF IT IS MORE LIKELY THAN NOT THAT THE POSITION WOULD BE SUSTAINED UPON AN AUDIT BASED SOLELY ON THE TECHNICAL MERITS OF THE TAX POSITION. THE ORGANIZATION ACCRUES INTEREST AND PENALTIES ON UNCERTAIN TAX POSITIONS AS A COMPONENT OF THE PROVISION FOR INCOME TAXES. LICIES (CONTINUED) THE ORGANIZATION FILES FEDERAL AND MASSACHUSETTS TAX RETURNS. THE STATUTE OF LIMITATIONS FOR THESE JURISDICTIONS IS GENERALLY THREE YEARS. THE ORGANIZATION HAD NO RETURNS UNDER EXAMINATION AS OF JUNE 30, 2024. 1 X 0 0 0 0 0 0 0 0 0 KATHLEEN FLYNN CEO 160200 0 0 0 0 0 0 0 0 0 160200 0 0 0 PART I, LINE 3 THE BOARD APPROVED THE CEO SALARY. FORM 990, PART V, LINE 13A MA FORM 990, PART VI, SECTION B, LINE 11B A COPY OF THE ORGANIZATION'S 990 IS MADE AVAILABLE TO THE BOARD OF DIRECTORS FOR REVIEW BEFORE IT IS FINALIZED AND FILED WITH APPLICABLE STATE AND FEDERAL AUTHORITIES. FORM 990, PART VI, SECTION B, LINE 15A THE PROCESS OF DETERMINING COMPENSATION OF THE CHIEF EXECUTIVE OFFICER MUST BE IN ACCORDANCE WITH THE EXECUTIVE COMPENSATION POLICY. FORM 990, PART VI, SECTION C, LINE 19 ORGANIZATION'S DOCUMENTS ARE AVAILABLE UPON REQUEST.