2023-11-13T14:58:29-05:00 2022-12-31 262669494 DAVIES GOLDSTEIN & ASSOCIATES CPA'S PO BOX 156 MATTHEWS NC 28106 990 2022-01-01 200751232 DUP 15Q ALLIANCE DUP1 8553871572 250 N TRADE ST STE 205 PMB 155 MATTHEWS NC 28105 CARRIE HOWELL EXECUTIVE DIRECTOR 8553871572 2023-10-16 true CARRIE HOWELL 999009999 false JEFFREY I GOLDSTEIN P00534322 7046840555 2023-11-02 2022 2023-04-26 12:10:37Z X DAVID GIFFORD 250 N TRADE ST STE 205 PMB 155 MATTHEWS NC 28105 567500 false X WWW.DUP15Q.ORG X 2004 OR WE EMPOWER 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. WE ENVISION A WORLD WHERE FAMILIES, CLINICIANS, AND ADVOCATES ENABLE INDIVIDUALS WITH DUP15Q TO LIVE FULL AND PRODUCTIVE LIVES. 11 11 8 10 0 569701 454102 142837 15600 12714 9253 14542 76194 739794 555149 268883 139301 0 302803 312361 0 47865 261076 96392 832762 548054 -92968 7095 595041 603477 28710 80073 566331 523404 X WE EMPOWER 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. WE ENVISION A WORLD WHERE FAMILIES, CLINICIANS, AND ADVOCATES ENABLE INDIVIDUALS WITH DUP15Q TO LIVE FULL AND PRODUCTIVE LIVES. false false 300946 7751 15600 EDUCATION, OUTREACH, & FAMILY SUPPORT DUP15Q ALLIANCE HAS BEEN PROVIDING SUPPORT AND ADVOCACY TO FAMILIES AFFECTED BY DUP15Q SYNDROME FOR OVER 28 YEARS. WE CONTINUE TO OFFER A VARIETY OF RESOURCES AND SUPPORT OPTIONS TO HELP UPLIFT AND ENGAGE OUR COMMUNITY AND ASSIST FAMILIES IN NAVIGATING THE VARIOUS CHALLENGES OF THE DUP15Q JOURNEY, INCLUDING: NEW FAMILY SUPPORT CALLS WITH OUR INTAK MANAGER, WHO HELPS MENTOR NEW DUP15Q ALLIANCE FAMILIES; PARENT TO PARENT AMBASSADORS WHO HAVE COMPLETED A 6-WEEK CHILD NEUROLOGY PEER SUPPORT TRAINING IN ORDER TO SUPPORT FELLOW DUP15Q FAMILIES; LICENSED CLINICAL PROFESSIONAL COUNSELOR SERVICES AT NO COST TO OUR FAMILIES; EDUCATIONAL INFORMATION ABOUT DUP15Q SYNDROME SUCH AS SYMPTOMS, DIAGNOSIS, AND TREATMENT OPTIONS; HELP WITH FINANCIAL PLANNING AND NAVIGATING SCHOOL IEP'S; COMMUNITY CONNECTION SUPPORT GROUPS, SIBSHOPS, AND VIP SIBLING KITS FOR FAMILIES OF THOSE AFFECTED BY DUP15Q SYNDROME; REGIONAL GATHERINGS FOR FAMILIES AND CAREGIVERS; AND RESOURCES FOR THE TRANSITION INTO ADULTHOOD. 20025 20025 LADDER LEARNING NETWORK THROUGH ITS SPECIALIZED CLINICS, LADDER LEARNING NETWORK CONNECTS FAMILIES TO MEDICAL PROFESSIONALS ACROSS THE GLOBE WHO HAVE EXTENSIVE EXPERIENCE TREATING DUP15Q SYNDROME AND ANGELMAN SYNDROME. WITH 18 CLINICS IN THE US, SIX PARTNER CLINICS ABROAD, AND NEW CLINICS BEING ADDED, THE NETWORK INCLUDES SPECIALISTS LIKE CLINICAL GENETICISTS, GENETIC COUNSELORS, NEUROLOGISTS, PSYCHIATRISTS, PSYCHOLOGISTS, SPEECH PATHOLOGISTS, PHYSICAL/OCCUPATIONAL THERAPISTS, NUTRITIONISTS AND MORE. DUP 15Q ALLIANCE PARTNERED WITH ASF TO LAUNCH THE LADDER LEARNING NETWORK IN ORDER TO: CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS WHO HAVE EXPERIENCE IN TREATING THESE TWO RARE DISORDERS, WHICH HAS HISTORICALLY BEEN DIFFICULT TO FIND; CONNECTING MEDICAL PROVIDERS WITH ONE ANOTHER REGULARLY, SO THEY CAN SHARE INFORMATION ABOUT THEIR MOST CHALLENGING CASES; CREATING AND MAINTAINING THE LADDER DATABASE, A GLOBAL NETWORK OF PATIENT DATA; AND CONNECTING THE INDUSTRY WITH MUCH NEEDED LOCATIONS TO HOST CLINICAL TRIALS, WITH THE BENEFITS OF HAVING PATIENTS IN PLACE WHEN THEY BECOME AVAILABLE. 111525 111525 RESEARCH GRANTS DUP15Q ALLIANCE CONTINUES TO PROMOTE RESEARCH TO SIGNIFICANTLY INCREASE UNDERSTANDING OF CHROMOSOME 15Q11.2- 13.1 DUPLICATION SYNDROME AND TO CREATE THERAPEUTICS TO IMPROVE THE LIVES OF ALL AFFECTED INDIVIDUALS. WE FORMALLY ENDORSE AND FUND RESEARCH, DISSEMINATE RESEARCH INFORMATION, AND PROMOTE OPPORTUNITIES FOR DUP15Q ALLIANCE FAMILIES TO PARTICIPATE IN RESEARCH STUDIES AND REGISTRIES. RESEARCH GRANTS FUNDED BY DUP15Q ALLIANCE DURING 2022 INCLUDE: ADDITIONAL FUNDING FOR THE NEWBORN SCREENING PROJECT WORKING TOWARD THE ADDITION OF CHROMOSOME 15 CONDITIONS TO EARLY CHECK, A FLEXIBLE FRAMEWORK AMENABLE TO SCREENING FOR A VARIETY OF CONDITIONS AT BIRTH; THE UCLA DISTEFANO FELLOWSHIP TO CONDUCT REMOTE ASSESSMENT OF DEVELOPMENTAL AND CLINICAL CHARACTERISTICS OF CHILDREN WITH DUP15Q SYNDROME; INITIAL FUNDING FOR A RARE EPILEPSY PARTNERSHIP AWARD GRANTED TO DR. YPE ELGERSMA'S TEAM AT ERASMUS MEDICAL CENTER TO DEVELOP A NEW MOUSE MODEL TO STUDY THE INTERACTION AND DOSE EFFECT OF THE UBE3A GENE; A COMPREHENSIVE RESEARCH LANDSCAPE ANALYSIS INCLUDING CURRENT RESEARCH TARGETS, RESEARCHERS, PROJECTS, AND FUNDING SOURCES; AND THE AHN FAMILY SCHOLARSHIP AWARDED TO AN UNDERGRADUATE AT UC DAVIS STUDYING THE EPIGENETICS OF NEURODEVELOPMENTAL DISORDERS. 432496 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 CARRIE HOWELL 9197024138 236 PRICE ST APT 207 WAXHAW NC 28173 X CARRIE HOWELL EXECUTIVE DI 40.00 X 105000 0 0 LISA FEEHERY VICE CHAIR 5.00 X X 0 0 0 DAVID GIFFORD CHAIR 10.00 X X 0 0 0 JOE IVAN BOARD MEMBER 5.00 X 0 0 0 STEVEN KADNER 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 TONY MARMO TREASURER 5.00 X X 0 0 0 MIKE PORATH BOARD MEMBER 5.00 X 0 0 0 SAM QUIGLEY BOARD MEMBER 5.00 X 0 0 0 JACQUELINE VANDERHOOF BOARD MEMBER 5.00 X 0 0 0 VANESSA VOGEL-FARLEY BOARD MEMBER 5.00 X 0 0 0 105000 1 false false false 454102 454102 SCIENCE SYMPOSIUM 15600 15600 15600 9253 9253 88545 12351 76194 555149 15600 9253 139301 139301 289272 224186 42165 22921 23089 17778 3232 2079 8582 8582 6286 6286 MISCELLANEOUS EXPENSES 53640 23347 13714 16579 SCIENCE SYMPOSIUM 27884 27884 548054 432496 67693 47865 223846 224952 300170 293979 37290 67497 2859 2859 14190 30876 595041 603477 9980 26993 18730 53080 28710 80073 X 566331 523404 566331 523404 595041 603477 7095 -50022 X false true X true false X 497634 515718 483391 569701 454102 2520546 158662 104145 262807 6681 10710 24057 41448 504315 526428 507448 728363 558247 2824801 2824801 6291 13430 11665 12714 9253 53353 6291 13430 11665 12714 9253 53353 510606 539858 519113 741077 567500 2878154 0.98150 0.98330 0.02000 0.02000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 508984 -50022 3857 -46165 555149 555149 551911 3857 3857 548054 548054 VARIOUS EVENTS 84412 84412 12351 84412 84412 12351 12351 72061 true FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS 75 EXECUTIVE DRIVE STE 327 AURORA IL 60504 593092842 501C3 38500 NEWBORN SCREENING REGENTS OF THE UNIV OF CALIFORNIA 501C3 12610 RESEARCH VARIOUS 83191 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 WE EMPOWER 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. WE ENVISION A WORLD WHERE FAMILIES, CLINICIANS, AND ADVOCATES ENABLE INDIVIDUALS WITH DUP15Q TO LIVE FULL AND PRODUCTIVE LIVES. FORM 990, PAGE 2, PART III, LINE 4A EDUCATION, OUTREACH, & FAMILY SUPPORT DUP15Q ALLIANCE HAS BEEN PROVIDING SUPPORT AND ADVOCACY TO FAMILIES AFFECTED BY DUP15Q SYNDROME FOR OVER 28 YEARS. WE CONTINUE TO OFFER A VARIETY OF RESOURCES AND SUPPORT OPTIONS TO HELP UPLIFT AND ENGAGE OUR COMMUNITY AND ASSIST FAMILIES IN NAVIGATING THE VARIOUS CHALLENGES OF THE DUP15Q JOURNEY, INCLUDING: NEW FAMILY SUPPORT CALLS WITH OUR INTAK MANAGER, WHO HELPS MENTOR NEW DUP15Q ALLIANCE FAMILIES; PARENT TO PARENT AMBASSADORS WHO HAVE COMPLETED A 6-WEEK CHILD NEUROLOGY PEER SUPPORT TRAINING IN ORDER TO SUPPORT FELLOW DUP15Q FAMILIES; LICENSED CLINICAL PROFESSIONAL COUNSELOR SERVICES AT NO COST TO OUR FAMILIES; EDUCATIONAL INFORMATION ABOUT DUP15Q SYNDROME SUCH AS SYMPTOMS, DIAGNOSIS, AND TREATMENT OPTIONS; HELP WITH FINANCIAL PLANNING AND NAVIGATING SCHOOL IEP'S; COMMUNITY CONNECTION SUPPORT GROUPS, SIBSHOPS, AND VIP SIBLING KITS FOR FAMILIES OF THOSE AFFECTED BY DUP15Q SYNDROME; REGIONAL GATHERINGS FOR FAMILIES AND CAREGIVERS; AND RESOURCES FOR THE TRANSITION INTO ADULTHOOD. FORM 990, PAGE 2, PART III, LINE 4B LADDER LEARNING NETWORK THROUGH ITS SPECIALIZED CLINICS, LADDER LEARNING NETWORK CONNECTS FAMILIES TO MEDICAL PROFESSIONALS ACROSS THE GLOBE WHO HAVE EXTENSIVE EXPERIENCE TREATING DUP15Q SYNDROME AND ANGELMAN SYNDROME. WITH 18 CLINICS IN THE US, SIX PARTNER CLINICS ABROAD, AND NEW CLINICS BEING ADDED, THE NETWORK INCLUDES SPECIALISTS LIKE CLINICAL GENETICISTS, GENETIC COUNSELORS, NEUROLOGISTS, PSYCHIATRISTS, PSYCHOLOGISTS, SPEECH PATHOLOGISTS, PHYSICAL/OCCUPATIONAL THERAPISTS, NUTRITIONISTS AND MORE. DUP 15Q ALLIANCE PARTNERED WITH ASF TO LAUNCH THE LADDER LEARNING NETWORK IN ORDER TO: CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS WHO HAVE EXPERIENCE IN TREATING THESE TWO RARE DISORDERS, WHICH HAS HISTORICALLY BEEN DIFFICULT TO FIND; CONNECTING MEDICAL PROVIDERS WITH ONE ANOTHER REGULARLY, SO THEY CAN SHARE INFORMATION ABOUT THEIR MOST CHALLENGING CASES; CREATING AND MAINTAINING THE LADDER DATABASE, A GLOBAL NETWORK OF PATIENT DATA; AND CONNECTING THE INDUSTRY WITH MUCH NEEDED LOCATIONS TO HOST CLINICAL TRIALS, WITH THE BENEFITS OF HAVING PATIENTS IN PLACE WHEN THEY BECOME AVAILABLE. FORM 990, PAGE 2, PART III, LINE 4C RESEARCH GRANTS DUP15Q ALLIANCE CONTINUES TO PROMOTE RESEARCH TO SIGNIFICANTLY INCREASE UNDERSTANDING OF CHROMOSOME 15Q11.2- 13.1 DUPLICATION SYNDROME AND TO CREATE THERAPEUTICS TO IMPROVE THE LIVES OF ALL AFFECTED INDIVIDUALS. WE FORMALLY ENDORSE AND FUND RESEARCH, DISSEMINATE RESEARCH INFORMATION, AND PROMOTE OPPORTUNITIES FOR DUP15Q ALLIANCE FAMILIES TO PARTICIPATE IN RESEARCH STUDIES AND REGISTRIES. RESEARCH GRANTS FUNDED BY DUP15Q ALLIANCE DURING 2022 INCLUDE: ADDITIONAL FUNDING FOR THE NEWBORN SCREENING PROJECT WORKING TOWARD THE ADDITION OF CHROMOSOME 15 CONDITIONS TO EARLY CHECK, A FLEXIBLE FRAMEWORK AMENABLE TO SCREENING FOR A VARIETY OF CONDITIONS AT BIRTH; THE UCLA DISTEFANO FELLOWSHIP TO CONDUCT REMOTE ASSESSMENT OF DEVELOPMENTAL AND CLINICAL CHARACTERISTICS OF CHILDREN WITH DUP15Q SYNDROME; INITIAL FUNDING FOR A RARE EPILEPSY PARTNERSHIP AWARD GRANTED TO DR. YPE ELGERSMA'S TEAM AT ERASMUS MEDICAL CENTER TO DEVELOP A NEW MOUSE MODEL TO STUDY THE INTERACTION AND DOSE EFFECT OF THE UBE3A GENE; A COMPREHENSIVE RESEARCH LANDSCAPE ANALYSIS INCLUDING CURRENT RESEARCH TARGETS, RESEARCHERS, PROJECTS, AND FUNDING SOURCES; AND THE AHN FAMILY SCHOLARSHIP AWARDED TO AN UNDERGRADUATE AT UC DAVIS STUDYING THE EPIGENETICS OF NEURODEVELOPMENTAL DISORDERS. 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.