2025-11-17T11:11:12-05:00 2024-12-31 262669494 DAVIES GOLDSTEIN & ASSOCIATES CPA'S PO BOX 156 MATTHEWS NC 28106 990 2024-01-01 200751232 DUP 15Q ALLIANCE DUP1 8553871572 250 N TRADE ST STE 205 PMB 155 MATTHEWS NC 28105 MIKE PORATH BOARD MEMBER 8553871572 2025-08-20 true true JEFFREY I GOLDSTEIN P00534322 7046840555 2025-10-29 2024 2025-03-06 01:10:19Z LISA FEEHERY 250 N TRADE ST STE 250 PMB 155 MATTHEWS NC 28105 1086096 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 8 10 0 545602 580723 288671 10762 8695 10162 79659 386799 922627 988446 247151 371359 0 306973 347701 0 54252 358687 101019 912811 820079 9816 168367 668536 909630 101183 146204 567353 763426 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 452815 360416 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 2024, WE HELPED DIRECT DONATIONS DO BEGIN A NATURAL HISTORY STUDY, RECRUITING FAMILIES TO PROVIDE DATA AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q AND HOW SYMPTOMS CHANGE OVER TIME. WE FUNDED MULTIPLE RESEARCH GRANTS, COMMITTING FOUR TIMES AS MUCH MONEY TO RESEARCH IN 2024 AS WE DID IN 2023. AFTER DUE DILIGENCE IN EXAMINING THEIR WORK, WE COMMITTED TO PARTNERSHIPS WITH TWO DIFFERENT DRUG DEVELOPMENT COMPANIES WORKING SPECIFICALLY ON TARGETED GENETIC TREATMENTS FOR DUP 15Q SYNDROME. WE RAISED MONEY FOR THESE PROJECTS WITH DEDICATED CAMPAIGNS: OUR FIRST GALA IN PHILADELPHIA; A NATIONAL COMPANY MATCHING EVENT LED BY A BOARD MEMBER; AND A FUNDRAISER IN TEXAS. CLINICS - WE PROVIDED SUPPORT TO OUR NETWORK OF 14 CLINICS THROUGH PER PATIENT PAYMENTS TO OFFSET COSTS OF CARE, THROUGH SUPPORT TO FAMILIES GOING TO CLINICS WITH FAMILY TRAVEL GRANTS, AND THROUGH A STAFF MEMBER TO OVERSEE THE NETWORK, CONVENE MONTHLY DISCUSSIONS AMONG CLINICIANS ACROSS THE COUNTRY, AND OFFER GENETIC COUNSELING TO NEWLY DIAGNOSED FAMILIES. THESE CLINICS CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING THIS RARE DISORDER. OUR COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION IN THE CLINICS ALLOWS US TO EXPAND OUR CLNICAL FOOTPRINT, IMPROVE ACCESS TO CARE, AND BRING TOGETHER A LARGER GROUP OF MEDICAL AND RESEARCH PROFESSIONALS AROUND THE WORLD. 123408 10762 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 50 SPEAKERS AND 30 SESSIONS, FOSTERING COLLABORATION, SHARING INSIGHTS, AND DRIVING FORWARD NEW APPROACHES TO IMPROVING CARE AND ADVANCING RESEARCH FOR 15Q DISORDERS. 103341 10943 EDUCATION AND OUTREACH PROGRAMS: FAMILY SUPPORT 2024 MARKED OUR 30TH YEAR AS AN ORGANIZATION, PROVIDING PERSONAL CONNECTIONS, SUPPORT, COMMUNITY AWARENESS, AND EDUCATION TO FAMILIES AND CAREGIVERS OF THOSE AFFECTED BY DUP15Q SYNDROME. WE CREATED AND DISTRIBUTED A 30TH ANNIVERSARY EDITION OF THE MIRROR, OUR NEWSLETTER. WE FUNDED OVER 150 LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS SO FAMILIES IN CRISIS COULD ACCESS HELP AT NO COST. OUR FAMILY SUPPORT MANAGER EXTENDED THE SUPPORT OFFERED TO NEW DUP15Q ALLIANCE FAMILIES BY INITIATING MONTHLY CONNECTION CALLS ON A VARIETY OF TOPICS AT A VARIETY OF TIMES, HELPING PARENTS OF NEWLY DIAGNOSED CHILDREN FORM FRIENDSHIPS AND LEARN FROM MORE EXPERIENCED PARENTS; AND WE COMPLETED AND LAUNCHED A TRANSITION TO ADULTHOOD ROAD MAP WITH RESOURCES, EDUCATION, AND TIPS FOR CAREGIVERS. WE HAD OUR MOST SUCCESSFUL YEAR OF FAMILY GATHERINGS HELD AT 8 "BELIEVE WALKS" ACROSS THE COUNTRY (IN TEXAS, CALIFORNIA, COLORADO, MINNESOTA, MASSACHUSETTS, INDIANA, ILLINOIS AND TENNESSEE) ALLOWING HUNDREDS OF OUR FAMILIES THE OPPORTUNITY TO GET TOGETHER, EDUCATE FAMILY AND FRIENDS, AND RAISE FUNDS TO SUPPORT OUR MISSION. 679564 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 4 0 8 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 CARRIE HOWELL EXECUTIVE DI 40.00 X 113440 0 0 SOPHIA CACCIATORE BOARD MEMBER 5.00 X 0 0 0 LISA FEEHERY PRESIDENT/CO 10.00 X X 0 0 0 JAMES FINK BOARD MEMBER 5.00 X 0 0 0 JOE IVAN SECRETARY/TR 5.00 X X 0 0 0 ANNE KARCH PRESIDENT/CO 10.00 X X 0 0 0 ELINA MARCHENKO BOARD MEMBER 5.00 X 0 0 0 TONY MARMO FORMER TREAS 5.00 X 0 0 0 MIKE PORATH BOARD MEMBER 5.00 X 0 0 0 SAM QUIGLEY BOARD MEMBER 5.00 X 0 0 0 SARAH THACKER BOARD MEMBER 5.00 X 0 0 0 JACQUELINE VANDERHOOF BOARD MEMBER 5.00 X 0 0 0 113440 1 false false false 580723 14715 580723 CONFERENCE REVENUE 10762 10762 10762 10162 10162 483713 97650 386063 OTHER INCOME 736 736 736 988446 11498 10162 371359 371359 113440 86214 20419 6807 209584 158082 35979 15523 24677 18755 4195 1727 6901 6901 9865 9865 MISCELLANEOUS EXPENSES 53243 14144 18769 20330 SCIENCE SYMPOSIUM 31010 31010 820079 679564 86263 54252 226183 377072 321318 394613 106149 102815 14886 35130 668536 909630 62068 84541 24040 50000 15075 11663 101183 146204 X 567096 648677 257 114749 567353 763426 668536 909630 168367 27706 X false true X true false X 483391 569701 454102 545602 580723 2633519 158662 104145 377668 495211 1135686 24057 24057 507448 728363 558247 923270 1075934 3793262 133062 133062 133062 133062 3660200 11665 12714 9253 8695 10162 52489 11665 12714 9253 8695 10162 52489 519113 741077 567500 931965 1086096 3845751 0.95180 0.98310 0.01000 0.02000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1016152 27706 27706 988446 988446 820079 820079 820079 GALA 220230 220230 68721 BELIEVE WALKS 206248 206248 18632 1 57235 57235 10297 483713 483713 97650 97650 386063 true WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY PO BOX 22371 NEW YORK NY 10087 150532082 501C3 25000 DREAM FUND GRANT UNC CHAPEL HILL 116 MANNING ST CB 7545 CHAPEL HILL NC 27599 566001393 501C3 50000 DREAM FUND GRANT CHILDREN'S HOSPITAL LOS ANGELES 4650 SUNSET BLVD MS 29 LOS ANGELES CA 90027 951690977 501C3 50000 NYS NDD PROGRAM VARIOUS 246359 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 2024, WE HELPED DIRECT DONATIONS DO BEGIN A NATURAL HISTORY STUDY, RECRUITING FAMILIES TO PROVIDE DATA AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q AND HOW SYMPTOMS CHANGE OVER TIME. WE FUNDED MULTIPLE RESEARCH GRANTS, COMMITTING FOUR TIMES AS MUCH MONEY TO RESEARCH IN 2024 AS WE DID IN 2023. AFTER DUE DILIGENCE IN EXAMINING THEIR WORK, WE COMMITTED TO PARTNERSHIPS WITH TWO DIFFERENT DRUG DEVELOPMENT COMPANIES WORKING SPECIFICALLY ON TARGETED GENETIC TREATMENTS FOR DUP 15Q SYNDROME. WE RAISED MONEY FOR THESE PROJECTS WITH DEDICATED CAMPAIGNS: OUR FIRST GALA IN PHILADELPHIA; A NATIONAL COMPANY MATCHING EVENT LED BY A BOARD MEMBER; AND A FUNDRAISER IN TEXAS. CLINICS - WE PROVIDED SUPPORT TO OUR NETWORK OF 14 CLINICS THROUGH PER PATIENT PAYMENTS TO OFFSET COSTS OF CARE, THROUGH SUPPORT TO FAMILIES GOING TO CLINICS WITH FAMILY TRAVEL GRANTS, AND THROUGH A STAFF MEMBER TO OVERSEE THE NETWORK, CONVENE MONTHLY DISCUSSIONS AMONG CLINICIANS ACROSS THE COUNTRY, AND OFFER GENETIC COUNSELING TO NEWLY DIAGNOSED FAMILIES. THESE CLINICS CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING THIS RARE DISORDER. OUR COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION IN THE CLINICS ALLOWS US TO EXPAND OUR CLNICAL 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 EDUCATION AND OUTREACH PROGRAMS: FAMILY SUPPORT 2024 MARKED OUR 30TH YEAR AS AN ORGANIZATION, PROVIDING PERSONAL CONNECTIONS, SUPPORT, COMMUNITY AWARENESS, AND EDUCATION TO FAMILIES AND CAREGIVERS OF THOSE AFFECTED BY DUP15Q SYNDROME. WE CREATED AND DISTRIBUTED A 30TH ANNIVERSARY EDITION OF THE MIRROR, OUR NEWSLETTER. WE FUNDED OVER 150 LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS SO FAMILIES IN CRISIS COULD ACCESS HELP AT NO COST. OUR FAMILY SUPPORT MANAGER EXTENDED THE SUPPORT OFFERED TO NEW DUP15Q ALLIANCE FAMILIES BY INITIATING MONTHLY CONNECTION CALLS ON A VARIETY OF TOPICS AT A VARIETY OF TIMES, HELPING PARENTS OF NEWLY DIAGNOSED CHILDREN FORM FRIENDSHIPS AND LEARN FROM MORE EXPERIENCED PARENTS; AND WE COMPLETED AND LAUNCHED A TRANSITION TO ADULTHOOD ROAD MAP WITH RESOURCES, EDUCATION, AND TIPS FOR CAREGIVERS. WE HAD OUR MOST SUCCESSFUL YEAR OF FAMILY GATHERINGS HELD AT 8 "BELIEVE WALKS" ACROSS THE COUNTRY (IN TEXAS, CALIFORNIA, COLORADO, MINNESOTA, MASSACHUSETTS, INDIANA, ILLINOIS AND TENNESSEE) ALLOWING HUNDREDS OF OUR FAMILIES THE OPPORTUNITY TO GET TOGETHER, EDUCATE FAMILY AND FRIENDS, AND RAISE FUNDS TO SUPPORT OUR MISSION. 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.