2024-05-14T12:07:47-05:00 2023-06-30 203968236 JAMES A GEORGE PC 300 BRICKSTONE SQUARE SUITE 201 ANDOVER MA 01810 990 2022-07-01 131912877 NATIONAL TAY-SACHS & ALLIED DISEASES ASS NATI 6172774463 2001 BEACON ST 204 BRIGHTON MA 02135 KATHLEEN M FLYNN CHIEF EXECUTIVE OFFICER 6172774463 2024-05-14 KATHLEEN FLYNN 999009999 0 JAMES A GEORGE CPA CVA JD P00659906 0 AAL1 IAL1 2022 2023-04-26 12:10:37Z KATHLEEN M FLYNN 2001 BEACON ST BRIGHTON MA 02135 1177492 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 896290 445566 355407 554854 1411 37785 0 139287 1253108 1177492 76954 315792 0 0 501943 584245 0 0 246629 191893 607769 770790 1507806 482318 -330314 3116145 2868442 23563 95923 3092582 2772519 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 470093 315792 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. 532068 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. 73433 554854 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. 1075594 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 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 10 0 6 0 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 RUTH FELDMAN 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 ORALEA MARQUARDT DIRECTOR 2.50 X 0 0 0 MICHAEL RICHARDS 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 LISAJANE ROMER 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 AMY SPEAK DIRECTOR 2.50 X 0 0 0 CARLA STECKMAN DIRECTOR 2.50 X 0 0 0 KATHLEEN FLYNN CEO 40.00 X 159451 0 0 159451 0 0 1 0 1 0 0 445566 445566 ANNUAL CONFERENCE 541700 554854 554854 554854 37785 37785 139287 0 139287 139287 1177492 554854 0 177072 315792 315792 516864 335962 41349 139553 27573 17922 2206 7445 39808 25875 3185 10748 22960 22960 3911 1815 2046 50 1637 1027 610 46636 4084 39698 2854 56581 29863 26718 55669 36382 12561 6726 241261 241160 101 1830 1830 1303 1303 5943 326 5617 GRANT PAYMENTS 73259 73259 FUNDRAISING 51188 13463 37725 BANK FEES 10666 0 10439 227 PRINTING AND REPRODUCTI 9822 170 572 9080 25103 9384 10826 4893 1507806 1075594 185583 246629 3046835 2835335 58400 8558 18900 83717 83717 1452 0 14207 900 3116145 2868442 23563 81117 0 14806 23563 95923 X 1136159 1186751 1956423 1585768 3092582 2772519 3116145 2868442 -330314 11272 -1021 0 X 0 1 X 1 0 X 820282 986319 1102890 896289 1139707 4945487 820282 986319 1102890 896289 1139707 4945487 4945487 21075 17354 1264 1411 37785 78889 5024376 0.98430 0.98960 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 83717 83717 0 0 LEASE LIABILITY 14806 14806 X 1197485 11272 8721 19993 1177492 0 1177492 1516527 8721 8721 1507806 0 1507806 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, 2023. EVENTS 139287 139287 139287 139287 139287 1 AUBURN UNIVERSITY AL 540 DEVALL DRIVE SUITE 200 AUBURN AL 36832 636000724 112000 0 FMV LYSOMAL STORAGE DISEASE RESEARCH UMASS CHAN MEDICAL CENTER 55 LAKE AVENUE NORTH WORCESTER MA 01655 043167352 142875 0 FMV LYSOMAL STORAGE DISEASE RESEARCH MGH INST OF HEALTH PROFESSIONS 36 1ST AVENUE CHARLESTOWN MA 02129 042697983 55917 0 FMV LYSOMAL STORAGE DISEASE RESEARCH 0 0 0 0 0 0 0 0 0 KATHLEEN FLYNN CEO 159451 0 0 0 0 0 0 0 0 0 159451 0 0 0 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.