2024-05-14T11:41:28-05:00 2023-12-31 660974586 ALTUM PR LLC 1225 PONCE DE LEON AVENUE SUITE GF-1 SAN JUAN RQ 00907 990 2023-01-01 822564392 SYSTEMIC JIA FOUNDATION SYST 5107039595 3584 OUTLOOK AVENUE CINCINNATI OH 45208 JONATHAN BOUTELLE DIRECTOR 5107039595 2024-05-14 1 JONATHAN BOUTELLE 999009999 1 JOHN T ADVANI P00033098 4083200260 X 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z JONATHAN BOUTELLE 3584 OUTLOOK AVENUE CINCINNATI OH 45208 348552 0 X WWW.SYSTEMICJIA.ORG X 2017 CA 1. TO SUPPORT RESEARCH RELATING TO TREATMENTS AND CURE OF SYSTEMIC JUVENILE IDIOPATHIC ARTHRITIS (SJIA); 2. PROMOTE INCREASED AWARENESS, KNOWLEDGE AND UNDERSTANDING OF SJIA BY MEDICAL PROFESSIONALS, THE GENERAL PUBLIC AND FAMILIES AFFECTED BY SJIA; 3. PROMOTE MUTUAL SUPPORT THROUGH BUILDING AND MAINTAINING AN EXTENSIVE WEB-BASED OR OTHER NETWORK OF INFORMATION AND RESOURCES FOR THE GENERAL PUBLIC AND FAMILIES. 3 1 0 0 0 0 192569 348552 0 0 0 0 0 0 192569 348552 317626 310000 0 0 0 0 0 0 0 42680 51009 360306 361009 -167737 -12457 102078 89621 0 0 102078 89621 X 1. TO SUPPORT RESEARCH RELATING TO TREATMENTS AND CURE OF SYSTEMIC JUVENILE IDIOPATHIC ARTHRITIS (SJIA); 2. PROMOTE INCREASED AWARENESS, KNOWLEDGE AND UNDERSTANDING OF SJIA BY MEDICAL PROFESSIONALS, THE GENERAL PUBLIC AND FAMILIES AFFECTED BY SJIA; 3. PROMOTE MUTUAL SUPPORT THROUGH BUILDING AND MAINTAINING AN EXTENSIVE WEB-BASED OR OTHER NETWORK OF INFORMATION AND RESOURCES FOR THE GENERAL PUBLIC AND FAMILIES. 0 0 11325 348552 SYSTEMIC JIA FOUNDATION PLANS SEVERAL TYPES OF FUNDRAISING: 1) DONATIONS FROM FAMILIES WITH SJIA: THE SYSTEMIC JIA FOUNDATION WILL REACH OUT TO FAMILIES WITH SJIA TO BOTH CONTRIBUTE AND RAISE FUNDS FOR THE BENEFIT OF THE SYSTEMIC JIA FOUNDATION. THE SYSTEMIC JIA FOUNDATION WILL RAISE FUNDS ONLINE, USING FUNDRAISING SITES SUCH AS CROWDRISE, STRIPE, FACEBOOK OR FUNDRAISING FUNCTIONALITY ON OUR OWN WEBSITE.2) EVENT SPONSORSHIPS FROM PHARMA COMPANIES: FOR ANY EVENTS THE SYSTEMIC JIA FOUNDATION ORGANIZE, THE SYSTEMIC JIA FOUNDATION WILL REACH OUT TO PHARMA COMPANIES WHO ARE INTERESTED IN SJIA TO GIVE SPONSORSHIPS AT DIFFERENT LEVELS TO SUPPORT THE EVENT.3) GENERAL: THE SYSTEMIC JIA FOUNDATION WILL UNDERTAKE ADDITIONAL FUNDRAISING FROM A VARIETY OF SOURCES INCLUDING MAIL, EMAIL, PERSONAL AND PHONE SOLICITATIONS. THE ORGANIZATION WILL CREATE PROPOSALS AND OTHER MATERIALS THAT WILL BE NECESSARY TO SUBMIT IN ORDER FOR THE ORGANIZATION TO RECEIVE GRANTS AND DONATIONS.4) GRANTS FROM OTHER CHARITABLE ORGANIZATIONS. THE SYSTEMIC JIA FOUNDATION WILL RAISE ADDITIONAL FUNDS FROM OTHER CHARITABLE FOUNDATIONS. 23487 CONFERENCES ORGANIZED OR ATTENDED IN 2023PRES CONGRESS 2023 ATTENDED FROM SEPTEMBER 28 - OCTOBER 1, 2023 AT ROTTERDAM, THE NETHERLANDS.THE FOUNDATION ORGANIZED A BOOTH AT THE EUROPEAN PAEDIATRIC RHEUMATOLOGY CONGRESS HELD AT ROTTERDAM, THE NETHERLANDS BETWEEN SEPTEMBER 28 - OCTOBER 1, 2023. RARE DISEASE DAY ORGANIZED VIRTUALLY ON FEBRUARY 25, 2023. THE PURPOSE OF THIS IS TO EDUCATE PARICIPANTS ON SJIA, STILL'S DISEASE AND MAS. HEAR EXPERTS TALK ON LATEST THERAPIES FOR SJIA, STILL'S DISEASE AND MAS WITH SPECIAL EMPHASIS ON CLINICAL TRIALS AND ALSO HELP PARTICIPANTS CONNECT WITH OTHER PATIENTS AND CAREGIVERS. FREE CME LECTURE SERIES FOR SECONDARY HLH/MAS ORGANIZED VIRTUALLY ON SEPTEMBER 7, 2023 AND OCTOBER 11, 2023. THIS LECTURE SERIES IS DESIGNED SPECIFICALLY FOR HEALTHCARE PROVIDERS INCLUDING PHSYCIANS, PHYSICIAN ASSISTANTS, NURSE PRACTITIONERS AND REGISTERED NURSES. THE SERIES EXAMINES CURRENT MEDICAL TREATMENTS, CONTROVERSIES AND DISCUSSION ON MANAGEMENT OF SECONDARY HLH INCLUDING MAS. 310000 310000 GRANT TO CINCINNATI CHILDREN'S HOSPITAL & HARVARD UNIVERSITYTHIS GRANT HAS BEEN PROVIDED TO FUND THE RESEARCH, CONDUCTING AN INITIAL OBSERVATIONAL STUDY FOR THE COLLECTION OF BIOSPECIMENS AND PATIENT DATA AND ESTABLISHING A CLINICAL AND SCIENTIFIC RESEARCH NETWORK (THE "RESEARCH NETWORK"), EACH FOR THE STUDY OF SYSTEMIC JUVENILE IDIOPATHIC ARTHRITIS. 344812 1 1 0 0 0 0 0 0 0 0 0 0 0 0 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 1 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 X 3 1 1 0 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 0 0 CA X X JOHN ADVANI CO ALTUM PR LLC 4083200260 1225 PONCE DE LEON AVENUE SUITE SAN JUAN PR 00907 X JONATHAN BOUTELLE DIRECTOR 2.00 X 0 0 0 RASHMI SINHA DIRECTOR 40.00 X 0 0 0 MATTHEW MIGHT DIRECTOR 1.00 X 0 0 0 0 0 0 0 0 0 0 0 348552 348552 348552 0 0 0 310000 310000 14205 14205 391 391 1824 1824 21663 21663 PUBLISHING 11250 11250 0 SOFTWARE 1419 1419 BANK FEES 160 0 160 FILING FEES 75 75 0 22 22 361009 344812 16197 0 102078 89621 102078 89621 0 0 X 0 0 0 0 102078 89621 102078 89621 102078 89621 -12457 0 X 0 0 0 X 90432 679692 61501 192569 348552 1372746 90432 679692 61501 192569 348552 1372746 1372746 1372746 1.00000 1.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 PRESIDENT AND FELLOWS OF HARVARD COLLEGE PO BOX 419209 BOSTON MA 02241 042103580 SECTION 501(C)(3) 60000 0 THIS GRANT HAS BEEN PROVIDED TO FUND THE RESEARCH TO FIND TREATMENTS AND CURE OF SYSTEMIC JUVENILE IDIOPATHIC ARTHRITIS. CINCINNATI CHILDREN'S HOSPITAL 3333 BURNET AVENUE CINCINNATI OH 45229 131083393 SECTION 501(C)(3) 250000 0 THIS GRANT HAS BEEN PROVIDED TO FUND THE RESEARCH TO FIND TREATMENTS AND CURE OF SYSTEMIC JUVENILE IDIOPATHIC ARTHRITIS. FORM 990, PART VI, SECTION A, LINE 2 JONATHAN BOUTELLE, DIRECTOR - HUSBAND OF RASHMI SINHA RASHMI SINHA, DIRECTOR - WIFE OF JONATHAN BOUTELLE FORM 990, PART VI, SECTION B, LINE 11B THE SIGNING BOARD MEMBER WILL REVIEW THE FORM 990 BEFORE IT IS RELEASED TO THE TAXING AUTHORITIES. THE OTHER BOARD MEMBERS WILL RECEIVE THE FINAL COPY OF THE FILED TAX RETURN. FORM 990, PART VI, SECTION B, LINE 12C TO ENSURE THE FOUNDATION OPERATES IN A MANNER CONSISTENT WITH CHARITABLE PURPOSES AND DOES NOT ENGAGE IN ACTIVITIES THAT COULD JEOPARDIZE ITS TAX-EXEMPT STATUS, A PERIODIC REVIEW SHALL BE CONDUCTED AND WILL INCLUDE THE FOLLOWING: 1. ASSESS WHETHER COMPENSATION ARRANGEMENTS AND BENEFITS ARE REASONABLE, BASED ON COMPETENT SURVEY INFORMATION, AND THE RESULT OF ARM'S LENGTH BARGAINING. 2. ASSESS WHETHER PARTNERSHIPS, JOINT VENTURES, AND ARRANGEMENTS WITH MANAGEMENT ORGANIZATIONS CONFORM TO THE FOUNDATION'S WRITTEN POLICIES, ARE PROPERLY RECORDED, REFLECT REASONABLE INVESTMENT OR PAYMENTS FOR GOODS AND SERVICES, FURTHER CHARITABLE PURPOSES AND DO NOT RESULT IN INUREMENT, IMPERMISSIBLE PRIVATE BENEFIT OR IN AN EXCESS BENEFIT TRANSACTION. FORM 990, PART VI, SECTION C, LINE 19 THE DOCUMENTS ARE AVAILABLE FOR PUBLIC INSPECTION VIA THE STATE OF CALIFORNIA REGISTRY OF CHARITABLE TRUSTS WEBSITE. WWW.RCT.DOJ.CA.GOV THE FOUNDATION INTENDS TO PUBLISH THE INFORMATION IN THEIR WEBSITE IN THE NEAR FUTURE. FORM 990, PART VII CONTACT ADDRESSES FOR OFFICERS, DIRECTORS, ETC JONATHAN BOUTELLE - 3584 OUTLOOK AVE, CINCINNATI, OH 45208. RASHMI SINHA - 3584 OUTLOOK AVE, CINCINNATI, OH 45208. MATTHEW MIGHT - 510 20TH ST. S, BIRMINGHAM, AL 35210. THE SINHA-BOUTELLE FOUNDATION 3584 OUTLOOK AVENUE CINCINNATI OH 45208 463792029 FINDING CURE FOR SYSTEMIC JUVENILE IDIOPATHIC ARTHRITIS CA SECTION 501(C)(3) PRIVATE FOUNDATION 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 THE SINHA-BOUTELLE FOUNDATION C 244000 CASH