2024-11-15T14:54:29-06:00 2024-06-30 471096596 RAFFOL AND COMPANY INC 105 CHESTNUT ST SUITE 11 NEEDHAM MA 02492 990 2023-07-01 043180414 VHL ALLIANCE INC VHLA 8007674845 PO BOX 844682 BOSTON MA 022844682 NANCY LEE SPECTOR TREASURER 8007674845 2024-11-15 1 0 JONATHAN VITALE P01922134 7814444926 2024-11-15 2023 2024-10-15 13:58:12Z X NANCY LEE SPECTOR PO BOX 844682 BOSTON MA 022844682 1537754 0 X WWW.VHL.ORG X 1993 MA TO SUPPORT EFFORTS TO CURE VON-HIPPEL-LINDAU DISEASE: TO PROVIDE A SUPPORT NETWORK FOR PATIENTS & THEIR FAMILIES: TO EDUCATE & INFORM THE PUBLIC & THE MEDICAL COMMUNITY ON CURRENT DEVELOPMENTS. 15 15 6 0 0 0 849284 1234173 42466 197390 57788 97272 395 8919 949933 1537754 325000 150000 0 0 381029 421419 0 0 197909 418417 391389 1124446 962808 -174513 574946 1871941 2316168 357980 222617 1513961 2093551 THE VHL ALLIANCE IS DEDICATED TO RESEARCH, EDUCATION AND SUPPORT TO IMPROVE AWARENESS, DIAGNOSIS, TREATMENT AND QUALITY OF LIFE FOR THOSE AFFECTED BY VHL DISEASE. 0 0 648284 150000 206309 THE VHL ALLIANCE PROVIDES A QUARTERLY NEWSLETTER, ON-LINE SERVICES, TELEPHONE OUTREACH AND OTHER SERVICES FOR VHL PATIENTS & FAMILY MEMBERS TO BE ABLE TO COMMUNICATE CURRENT VHL RESEARCH & MEDICAL INFORMATION. THE VHL ALLIANCE ALSO PROVIDES EDUCATIONAL MATERIAL INCLUDING PATIENT HANDBOOKS AND BROCHURES ON LIVING WITH VHL DISEASE, THE VHL ALLIANCE ALSO HOLDS MEDICAL/RESEARCH SYMPOSIUMS, AN ANNUAL CONFERENCES & RECURRING SEMINARS, AND MAINTAINS EDUCATION & RESEARCH PROGRAMS SUCH AS THE TISSUE BANK AND THE CENTRAL VHL DATABASE. 648284 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 6 1 0 0 0 0 0 0 0 0 0 0 X 15 15 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AZ CA CO CT FL GA IL IN KS KY ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI X X X JANET THOMPSON EXEC DIR 8007674845 PO BOX 844682 BOSTON MA 022844682 WILLIAM ENGEL DIRECTOR 5.00 X 0 0 0 KWAME GARRETT PRICE DIRECTOR 5.00 X 0 0 0 DAFFODIL BAEZ DIRECTOR 5.00 X 0 0 0 STACY YATES DIRECTOR 5.00 X 0 0 0 ROHAN NIRODY VICE CHAIRPERSON 5.00 X 0 0 0 MICHAEL VAN LOON DIRECTOR 5.00 X 0 0 0 DANIEL BATTEN DIRECTOR 5.00 X 0 0 0 CONNIE RATH ED DIRECTOR 5.00 X 0 0 0 CARY SCHWANITZ SECRETARY & DIRECTOR 5.00 X X 0 0 0 JACQUELINE ZARRO DIRECTOR 5.00 X 0 0 0 PRASHANT KUDVA DIRECTOR 5.00 X 0 0 0 LEE WILLER SPECTOR TREASURER & DIRECTOR 5.00 X X 0 0 0 STACY LLOYD MPH CHAIRPERSON 5.00 X X 0 0 0 OTHON ILIOPOULOS MD PHD DIRECTOR 5.00 X 0 0 0 JOHN JOSEY DIRECTOR 5.00 X 0 0 0 0 0 0 1 0 0 0 0 X 1234173 1234173 CONFERENCES & SYMPOSIA 624100 197390 197390 197390 97272 97272 MISCELLANEOUS INCOME 900099 8919 8919 8919 1537754 206309 0 97272 100000 100000 50000 50000 102000 69000 10000 23000 288968 192948 29097 66923 30451 20402 3045 7004 6250 6250 14175 9497 1418 3260 2186 1098 1088 7049 4552 912 1585 16065 10763 1607 3695 36700 32736 3964 4889 3276 489 1124 OUTSIDE SERVICES 159159 114419 22155 22585 PUBLIC RELATIONS 82640 31378 51262 OUTREACH, WEBINARS & SU 20464 19588 876 BANK CHARGES 13770 27 13249 494 28042 21076 2167 4799 962808 648284 116615 197909 185377 62085 338225 456141 9123 12762 1339216 1785180 1871941 2316168 14767 10319 341667 208333 1546 3965 357980 222617 X 1513961 1743551 350000 1513961 2093551 1871941 2316168 574946 4644 0 X 0 1 X 1 0 X 546588 1011833 1020221 849284 1234173 4662099 43441 58815 42085 42466 197390 384197 590029 1070648 1062306 891750 1431563 5046296 45000 60000 615100 720100 17740 323756 341496 62740 60000 938856 1061596 3984700 22294 4166 3556 62233 101916 194165 22294 4166 3556 62233 101916 194165 700 72001 2672 395 8919 84687 613023 1146815 1068534 954378 1542398 5325148 0.74830 0.86920 0.03650 0.02320 X SCHEDULE A, PART III, LINE 12, EXPLANATION OF OTHER INCOME: MISCELLANEOUS REVENUE - 2019 AMOUNT: $ 700. 2020 AMOUNT: $ 72,001. 2021 AMOUNT: $ 2,672. 2022 AMOUNT: $ 395. 2023 AMOUNT: $ 8,919. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1549550 4644 7152 11796 1537754 0 1537754 969960 7152 7152 962808 0 962808 0 0 0 0 0 0 0 0 0 0 EUROPE (INCLUDING ICELAND & GREENLAND) INVESTIGATING TISSUE-SPECIFIC VHL HAPLOINSUFFICIENCY AND TUMOURIGENESIS WITH PATIENT-DERIVED IPSC 50000 0 0 0 0 0 0 0 1 UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN ANTONIO 7703 FLOYD CURL DRIVE MC7828 SAN ANTONIO TX 78229 50000 0 VHL RELATED PHEOCHROMOCYTOMAS STUDY UNIVERSITY OF UTAH 30 S 2000 E RM 3912 SALT LAKE CITY UT 84112 50000 0 NEUROFIBROMIN STABILIZATION AS A TREATMENT STRATEGY FOR VHL DISEASE UNIVERSITY OF NOTRE DAME 940 GRACE HALL NOTRE DAME IN 46556 50000 0 SYNTHETIC ESSENTIALITY OF TRAIL/TNFSF10 IN VHL-DEFICIENT RENAL CELL CARCINOMA MD ANDERSON CANCER CENTER 1515 HOLCOMBE BLVD HOUSTON TX 77030 16667 0 IMMUNE MODULATION IN VON HIPPELLINDAU DISEASE BY TARGETING THE DNA DAMAGE RESPONSE NETWORK FORM 990, PART VI, SECTION B, LINE 11B THE COMPLETED FORM 990 IS PROVIDED TO THE BOARD OF DIRECTORS FOR REVIEW AND APPROVAL BEFORE FILING ELECTRONICALLY WITH THE INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C THE ORGANIZATION MAINTAINS AN ANNUAL SIGNED DISCLOSURE TO MONITOR COMPLIANCE WITH ITS CONFLICT OF INTEREST POLICY. FORM 990, PART VI, SECTION B, LINE 15 COMPENSATION FOR THE ORGANIZATION'S EXECUTIVE DIRECTOR AND KEY EMPLOYEES IS PART OF THE BUDGETING PROCESS FOR THE BOARD OF DIRECTORS. COMPARABILITY DATA IS USED AS PART OF THE BUDGET DETERMINATION PROCESS. THE BOARD OF DIRECTORS DETERMINES THE APPROVED BUDGETED PAYROLL FIGURES ANNUALLY. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND ANNUAL INFORMATION RETURNS AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST. ADDITIONALLY, THE ORGANIZATION'S DOCUMENTS, RETURNS AND STATEMENTS ARE AVAILABLE ON THE WEBSITE OF THE COMMONWEALTH OF MASSACHUSETTS. THE ORGANIZATION'S FORM 990 IS ALSO AVAILABLE ON THE GUIDESTAR WEBSITE. AMENDED TAX RETURN EXPLANATION THE ORGANIZATION HAS AMENDED THEIR FILING DO TO INADVERTENTLY FILING CONTRIBUTIONS ON PART VIII LINE 1E INSTEAD OF ON PART VIII LINE 1F. THE AMENDMENT HAS NO OTHER CHANGES AND NOW PROPERLY CLASSIFIES THE CONTRIBUTION LINE ITEM.