2026-09-21T15:29:33-04:00 2025-12-31 262669494 DAVIES GOLDSTEIN & ASSOCIATES CPA'S PO BOX 156 MATTHEWS NC 28106 990 2025-01-01 200751232 DUP 15Q ALLIANCE DUP1 8553871572 250 N TRADE ST STE 205 PMB 155 MATTHEWS NC 28105 MIKE PORATH EXECUTIVE DIRECTOR 8553871572 2026-08-17 true JEFFREY I GOLDSTEIN P00534322 7046840555 2026-08-24 2025 SARAH THACKER 7096613 false X WWW.DUP15Q.ORG X 2004 WI WE PROVIDE EDUCATION, RESOURCES, AND SUPPORT TO FAMILIES AND PATIENTS AFFECTED BY DUP15Q SYNDROME, WHILE FIGHTING FOR ADVANCES IN CLINICAL CARE, TREATMENTS, AND SCIENTIFIC RESEARCH. 11 11 6 10 0 580723 6621901 10762 174270 10162 11707 386799 225433 988446 7033311 371359 602500 0 347701 417622 0 117803 101019 504425 820079 1524547 168367 5508764 909630 6375892 146204 50927 763426 6324965 X DUP15Q ALLIANCE EMPOWERS INDIVIDUALS LIVING WITH DUP15Q SYNDROME AND OTHER RELATED RARE DISEASES TO REACH THEIR FULL POTENTIAL BY ADVANCING BREAKTHROUGH RESEARCH AND LIFE-CHANGING THERAPEUTIC TREATMENTS, SUPPORTING FAMILIES AFFECTED BY DUP15Q, AND PROMOTING ADVOCACY. AS THE ONLY PATIENT ADVOCACY GRUP FOCUSED ON DUPLICATION 15Q SYNDROME, OUR ORGANIZATION IS DEVOTED TO ADVANCING RESEARCH INTO THE SYNDROME, SUPPORTING AND PROMOTING THE WORK OF SCIENTISTS, CLINICIANS, AND DRUG DEVELOPMENT COMPANIES IN THE SEARCH FOR TREATMENTS THAT WILL ALLEVIATE THE SERIOUS AND MULTIPLE SYMPTOMS OF THE DISORDER. WE ALSO WORK TO EDUCATE FAMILIES ABOUT THE SYNDROME, SUPPORTING THEM WITH INFORMATION, AND CONNECTING FAMILIES TOGETHER FROM THE DAY THEY FIRST REGISTER WITH US, SO THAT THEY CAN SHARE INFORMATION AND SUPPORT EACH OTHER. WE OFFER FAMILIES OPPORTUNITIES TO EDUCATE THEIR OWN FRIENDS AND FAMILIES AND THEIR COMMUNITIES ABOUT DUPLICATION 15Q SYNDROME, RAISING AWARENESS ABOUT THIS RARE CONDITION. false false 708642 600000 143668 SCIENTIFIC AND CLINICAL INITIATIVES: THE DUP15Q ALLIANCE STANDS AT THE FOREFRONT OF COLLABORATIVE EFFORTS WITH STAKEHOLDERS IN ACADEMIC, CLINICAL, AND PHARMACEUTICAL SPACES TO ADVANCE RESEARCH INTO DUP15Q SYNDROME. IN 2025, WE FINANCIALLY SUPPORTED PARTNERSHIPS WITH TWO DIFFERENT DRUG DEVELOPMENT COMPANIES WORKING SPECIFICALLY ON TARGETED GENETIC TREATMENTS FOR DUP15Q SYNDROME. ADDITIONALLY, WE ALSO FUNDED AND AWARDED A RESEARCH GRANT TO AN ACADEMIC LAB STUDYING ONE OF THE COMPANIES' THERAPEUTIC CANDIDATES. WE DIRECTED DONATIONS TO CONTINUE A SINGLE-SITE NATURAL HISTORY STUDY INITIATED IN 2024, RECRUITING FAMILIES TO PROVIDE DATA AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q AND HOW SYMPTOMS CHANGE OVER TIME. FURTHERMORE, WE WORKED TO EXPAND THE NATURAL HISTORY STUDY TO ENCOMPASS INDIVIDUALS AT OUR FAMILY CONFERENCE, AN UNDERTAKING THAT WIDENED THE ABILITY FOR OUR COMMUNITY TO PARTICIPATE IN THIS PIVOTAL STUDY. OUR BIENNIAL FAMILY CONFERENCE SAW OVER 500 MEMBERS OF THE DUP15Q SYNDROME COMMUNITY CONVENE IN INDIANAPOLIS TO CONNECT AND LEARN ABOUT WAYS THE ALLIANCE CAN SUPPORT THEM. SOME OF THE MAIN FOCUSES WERE RESEARCH, NATURAL HISTORY STUDIES, AND CLINICAL TRIALS ON THE HORIZON. WE SUPPORTED A TEAM OF COMBINEDBRAIN RESEARCHERS AT OUR CONFERENCE WHO COLLECTED BLOOD SAMPLES FROM AFFECTED INDIVIDUALS AND THEIR FAMILY MEMBERS TO SUPPORT ONGOING AND FUTURE DUP15Q RESEARCH PROJECTS. CLINICS - WE PROVIDED SUPPORT TO OUR NETWORK OF 15 CLINICS THROUGH PER- PATIENT PAYMENTS TO OFFSET COSTS OF CARE. WE ALSO SUPPORTED OUR FAMILIES THROUGH TRAVEL GRANTS AND SPECIALIZED EMERGENCY CONSULTATIONS FOR FAMILIES IN CRISIS. DUP15Q CLINICS CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING DUP15Q SYNDROME. OUR CLINICAL COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION ALLOWS US TO EXPAND OUR CLINICAL FOOTPRINT, IMPROVE ACCESS TO CARE, AND BRING TOGETHER A LARGER GROUP OF MEDICAL AND RESEARCH PROFESSIONALS AROUND THE WORLD. 104372 30602 EDUCATION AND OUTREACH: SCIENCE SYMPOSIUM THIS YEAR WE CO-HOSTED 275 RESEARCHERS, CLINICIANS, AND INDUSTRY MEMBERS FROM AROUND THE WORLD AT THE DUP15Q ALLIANCE/ANGELMAN SYNDROME FOUNDATION SCIENCE SYMPOSIUM IN JULY. THE EVENT INCLUDED 33 PRESENTERS AND 11 POSTERS, FOSTERING COLLABORATION, SHARING INSIGHTS, AND DRIVING FORWARD NEW APPROACHES TO IMPROVING CARE AND ADVANCING RESEARCH FOR 15Q DISORDERS. 409951 2500 FAMILY SUPPORT IN 2025, DUP15Q ALLIANCE CONTINUED TO INCREASE PROGRAMMING TO SUPPORT INDIVIDUALS, THEIR FAMILIES AND CAREGIVERS, AS WELL AS EXTENDED SUPPORTERS. IN THE SPRING, WE LAUNCHED A REGIONAL REPRESENTATIVE PROGRAM TO PROVIDE A LOCAL CONTACT FOR DUP15Q ALLIANCE FAMILIES IN THE US. WE CURRENTLY HAVE 28 REPRESENTATIVES THAT NOT ONLY PROVIDE SUPPORT AND INFORMATION, BUT ALSO HOSTED MULTIPLE LOCAL GATHERINGS FOR DUP15Q FAMILIES TO MEET. THESE REPRESENTATIVES ARE SUPPORTED BY THE FAMILY SUPPORT MANAGER THROUGH QUARTERLY VIRTUAL MEETINGS AND QUARTERLY INFORMATIVE NEWSLETTERS THAT HELP EMPOWER THE TEAM TO ASSIST THEIR FAMILIES. WE FUNDED LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS SO FAMILIES IN CRISIS COULD ACCESS HELP AT NO COST. OUR FAMILY SUPPORT MANAGER PERSONALLY REACHES OUT TO NEWLY DIAGNOSED FAMILIES, GIVING THEM PERSONAL SUPPORT AND CONNECTING THEM TO THEIR COMMUNITY. IN 2025, WE HAD A RECORD NUMBER OF PARENTS ATTENDING A VARIETY OF MONTHLY VIRTUAL CONNECTION CALLS THAT ARE OFFERED THROUGHOUT EACH MONTH. THESE CALLS HELP FORM FRIENDSHIPS AMONG PARENTS WITH CHILDREN WITH DUP15Q SYNDROME, AND GIVE THEM A SAFE SPACE TO LEARN FROM ONE ANOTHER. AS A CONFERENCE YEAR, THERE WERE ONLY 2 BELIEVE FUNDRAISING WALKS - HOWEVER, THEY STILL GAVE FAMILIES THE OPPORTUNITY TO GET TOGETHER, EDUCATE FAMILY AND FRIENDS, AND RAISE FUNDS TO SUPPORT OUR MISSION. OTHER PROGRAMS WERE MAINTAINED, SUCH AS THE COMPASSION EXPERIENCE, VIP KITS, AND THE FAMILIES IN CRISIS/WRAPPED IN LOVE PROGRAM. 1222965 true true false false false false false false false false false false false false false false true false false false false false false false true false false true false false false false false false false false false false false false false false false false false false false true 3 0 6 true false false false false true true true true false false false false false false false false X 11 11 false false false false false false false true true false false true true true true true true false false false X X X MIKE PORATH 8553871572 250 N TRADE ST STE 205 PMB 155 MATTHEWS NC 28105 MIKE PORATH EXECUTIVE DI 40.00 X 125000 0 0 DYLAN RITTER DIRECTOR 40.00 X 110000 0 0 SHERIE CABEZAS BOARD MEMBER 5.00 X 0 0 0 SOPHIA CACCIATORE BOARD MEMBER 5.00 X 0 0 0 GUY CALVERT BOARD MEMBER 5.00 X 0 0 0 LISA FEEHERY VICE CHAIR 5.00 X X 0 0 0 JOE IVAN BOARD MEMBER 5.00 X 0 0 0 JULIA JORDANICH BOARD MEMBER 5.00 X 0 0 0 ANNE KARCH SECRETARY 5.00 X X 0 0 0 ELINA MARCHENKO BOARD MEMBER 5.00 X 0 0 0 SUBHA SUBBIAH TREASURER 5.00 X X 0 0 0 SARAH THACKER CHAIR 10.00 X X 0 0 0 JACQUELINE VANDERHOOF BOARD MEMBER 5.00 X 0 0 0 235000 2 false false false 6621901 8334 6621901 CONFERENCE REVENUE 174270 174270 174270 11707 11707 288166 63302 224864 OTHER INCOME 569 569 569 7033311 174839 11707 600000 600000 2500 2500 125000 65000 28750 31250 265398 139080 60944 65374 27224 14156 6262 6806 23225 23225 7177 7177 23048 12044 5296 5708 FAMILY CONFERENCE 316003 316003 MISCELLANEOUS EXPENSES 40081 9291 29302 1488 BAD DEBT EXPENSE 30000 30000 SCIENCE SYMPOSIUM 24515 24515 40376 40376 1524547 1222965 183779 117803 377072 5887094 394613 474095 102815 830 35130 13873 909630 6375892 84541 40930 50000 11663 9997 146204 50927 X 648677 1119042 114749 5205923 763426 6324965 909630 6375892 5508764 52775 X false true X true false X 569701 454102 545602 580723 6621901 8772029 158662 104145 377668 495211 463005 1598691 728363 558247 923270 1075934 7084906 10370720 133062 133062 133062 133062 10237658 12714 9253 8695 10162 11707 52531 12714 9253 8695 10162 11707 52531 741077 567500 931965 1086096 7096613 10423251 0.98220 0.95180 0.01000 0.01000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 7086086 52775 52775 7033311 7033311 1524547 1524547 1524547 GALA 193035 193035 52162 BELIEVE WALKS 58151 58151 4460 1 36980 36980 6680 288166 288166 63302 63302 224864 true KICHO INC 169 MADISON AVE STE 2641 NEW YORK NY 10016 500000 RESEARCH QUIVER BIOSCIENCE INC 150 CAMBRIDGEPARK DR CAMBRIDGE MA 02140 922683215 100000 RESEARCH SCHEDULE I, PAGE 1, PART I, LINE 2 THE DUP15 ALLIANCE REQUIRES ANNUAL FINANCIAL AND SCIENTIFIC PROGRESS REPORTING FROM ALL INVESTIGATORS AND SIGNED BY THE GRANTEE INSTITUTION. FORM 990 - ORGANIZATION'S MISSION DUP15Q ALLIANCE EMPOWERS INDIVIDUALS LIVING WITH DUP15Q SYNDROME AND OTHER RELATED RARE DISEASES TO REACH THEIR FULL POTENTIAL BY ADVANCING BREAKTHROUGH RESEARCH AND LIFE-CHANGING THERAPEUTIC TREATMENTS, SUPPORTING FAMILIES AFFECTED BY DUP15Q, AND PROMOTING ADVOCACY. AS THE ONLY PATIENT ADVOCACY GRUP FOCUSED ON DUPLICATION 15Q SYNDROME, OUR ORGANIZATION IS DEVOTED TO ADVANCING RESEARCH INTO THE SYNDROME, SUPPORTING AND PROMOTING THE WORK OF SCIENTISTS, CLINICIANS, AND DRUG DEVELOPMENT COMPANIES IN THE SEARCH FOR TREATMENTS THAT WILL ALLEVIATE THE SERIOUS AND MULTIPLE SYMPTOMS OF THE DISORDER. WE ALSO WORK TO EDUCATE FAMILIES ABOUT THE SYNDROME, SUPPORTING THEM WITH INFORMATION, AND CONNECTING FAMILIES TOGETHER FROM THE DAY THEY FIRST REGISTER WITH US, SO THAT THEY CAN SHARE INFORMATION AND SUPPORT EACH OTHER. WE OFFER FAMILIES OPPORTUNITIES TO EDUCATE THEIR OWN FRIENDS AND FAMILIES AND THEIR COMMUNITIES ABOUT DUPLICATION 15Q SYNDROME, RAISING AWARENESS ABOUT THIS RARE CONDITION. FORM 990, PAGE 2, PART III, LINE 4A SCIENTIFIC AND CLINICAL INITIATIVES: THE DUP15Q ALLIANCE STANDS AT THE FOREFRONT OF COLLABORATIVE EFFORTS WITH STAKEHOLDERS IN ACADEMIC, CLINICAL, AND PHARMACEUTICAL SPACES TO ADVANCE RESEARCH INTO DUP15Q SYNDROME. IN 2025, WE FINANCIALLY SUPPORTED PARTNERSHIPS WITH TWO DIFFERENT DRUG DEVELOPMENT COMPANIES WORKING SPECIFICALLY ON TARGETED GENETIC TREATMENTS FOR DUP15Q SYNDROME. ADDITIONALLY, WE ALSO FUNDED AND AWARDED A RESEARCH GRANT TO AN ACADEMIC LAB STUDYING ONE OF THE COMPANIES' THERAPEUTIC CANDIDATES. WE DIRECTED DONATIONS TO CONTINUE A SINGLE-SITE NATURAL HISTORY STUDY INITIATED IN 2024, RECRUITING FAMILIES TO PROVIDE DATA AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q AND HOW SYMPTOMS CHANGE OVER TIME. FURTHERMORE, WE WORKED TO EXPAND THE NATURAL HISTORY STUDY TO ENCOMPASS INDIVIDUALS AT OUR FAMILY CONFERENCE, AN UNDERTAKING THAT WIDENED THE ABILITY FOR OUR COMMUNITY TO PARTICIPATE IN THIS PIVOTAL STUDY. OUR BIENNIAL FAMILY CONFERENCE SAW OVER 500 MEMBERS OF THE DUP15Q SYNDROME COMMUNITY CONVENE IN INDIANAPOLIS TO CONNECT AND LEARN ABOUT WAYS THE ALLIANCE CAN SUPPORT THEM. SOME OF THE MAIN FOCUSES WERE RESEARCH, NATURAL HISTORY STUDIES, AND CLINICAL TRIALS ON THE HORIZON. WE SUPPORTED A TEAM OF COMBINEDBRAIN RESEARCHERS AT OUR CONFERENCE WHO COLLECTED BLOOD SAMPLES FROM AFFECTED INDIVIDUALS AND THEIR FAMILY MEMBERS TO SUPPORT ONGOING AND FUTURE DUP15Q RESEARCH PROJECTS. CLINICS - WE PROVIDED SUPPORT TO OUR NETWORK OF 15 CLINICS THROUGH PER- PATIENT PAYMENTS TO OFFSET COSTS OF CARE. WE ALSO SUPPORTED OUR FAMILIES THROUGH TRAVEL GRANTS AND SPECIALIZED EMERGENCY CONSULTATIONS FOR FAMILIES IN CRISIS. DUP15Q CLINICS CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING DUP15Q SYNDROME. OUR CLINICAL COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION ALLOWS US TO EXPAND OUR CLINICAL FOOTPRINT, IMPROVE ACCESS TO CARE, AND BRING TOGETHER A LARGER GROUP OF MEDICAL AND RESEARCH PROFESSIONALS AROUND THE WORLD. FORM 990, PAGE 2, PART III, LINE 4C FAMILY SUPPORT IN 2025, DUP15Q ALLIANCE CONTINUED TO INCREASE PROGRAMMING TO SUPPORT INDIVIDUALS, THEIR FAMILIES AND CAREGIVERS, AS WELL AS EXTENDED SUPPORTERS. IN THE SPRING, WE LAUNCHED A REGIONAL REPRESENTATIVE PROGRAM TO PROVIDE A LOCAL CONTACT FOR DUP15Q ALLIANCE FAMILIES IN THE US. WE CURRENTLY HAVE 28 REPRESENTATIVES THAT NOT ONLY PROVIDE SUPPORT AND INFORMATION, BUT ALSO HOSTED MULTIPLE LOCAL GATHERINGS FOR DUP15Q FAMILIES TO MEET. THESE REPRESENTATIVES ARE SUPPORTED BY THE FAMILY SUPPORT MANAGER THROUGH QUARTERLY VIRTUAL MEETINGS AND QUARTERLY INFORMATIVE NEWSLETTERS THAT HELP EMPOWER THE TEAM TO ASSIST THEIR FAMILIES. WE FUNDED LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS SO FAMILIES IN CRISIS COULD ACCESS HELP AT NO COST. OUR FAMILY SUPPORT MANAGER PERSONALLY REACHES OUT TO NEWLY DIAGNOSED FAMILIES, GIVING THEM PERSONAL SUPPORT AND CONNECTING THEM TO THEIR COMMUNITY. IN 2025, WE HAD A RECORD NUMBER OF PARENTS ATTENDING A VARIETY OF MONTHLY VIRTUAL CONNECTION CALLS THAT ARE OFFERED THROUGHOUT EACH MONTH. THESE CALLS HELP FORM FRIENDSHIPS AMONG PARENTS WITH CHILDREN WITH DUP15Q SYNDROME, AND GIVE THEM A SAFE SPACE TO LEARN FROM ONE ANOTHER. AS A CONFERENCE YEAR, THERE WERE ONLY 2 BELIEVE FUNDRAISING WALKS - HOWEVER, THEY STILL GAVE FAMILIES THE OPPORTUNITY TO GET TOGETHER, EDUCATE FAMILY AND FRIENDS, AND RAISE FUNDS TO SUPPORT OUR MISSION. OTHER PROGRAMS WERE MAINTAINED, SUCH AS THE COMPASSION EXPERIENCE, VIP KITS, AND THE FAMILIES IN CRISIS/WRAPPED IN LOVE PROGRAM. FORM 990, PAGE 6, PART VI, LINE 11B A COMPLETE COPY OF THE FORM 990 IS PROVIDED TO BOARD MEMBERS FOR REVIEW BEFORE FILING. FORM 990, PAGE 6, PART VI, LINE 12C THE ORGANIZATION HAS A WRITTEN CONFLICT OF INTEREST POLICY. THE DIRECTOR AND ALL OFFICERS ARE REQUIRED TO DISCLOSE ANNUALLY ANY INTERESTS THAT COULD GIVE RISE TO CONFLICTS. THE ORGANIZATION REGULARLY AND CONSISTENTLY MONITORS AND ENFORCES COMPLIANCE WITH THE POLICY. FORM 990, PAGE 6, PART VI, LINE 19 THE ORGANIZATION OFFERS ALL OF ITS INFORMATION FOR PUBLIC INSPECTION UPON REQUEST. THE ORGANIZATION WILL REPORT ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ON THEIR WEBPAGE UPON REQUEST.