2024-11-12T14:28:15-05:00 2023-12-31 262669494 DAVIES GOLDSTEIN & ASSOCIATES CPA'S PO BOX 156 MATTHEWS NC 28106 990 2023-01-01 200751232 DUP 15Q ALLIANCE DUP1 8553871572 250 N TRADE ST STE 205 PMB 155 MATTHEWS NC 28105 CARRIE HOWELL EXECUTIVE DIRECTOR 8553871572 2024-10-16 true false JEFFREY I GOLDSTEIN P00534322 7046840555 2024-10-28 2023 2024-10-15 13:58:12Z LISA FEEHERY 250 N TRADE ST STE 250 PMB 155 MATTHEWS NC 28105 931965 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. 9 9 7 10 0 454102 545602 15600 288671 9253 8695 76194 79659 555149 922627 139301 247151 0 312361 306973 0 51399 96392 358687 548054 912811 7095 9816 603477 668536 80073 101183 523404 567353 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. WE ENVISION A WORLD WHERE FAMILIES, CLINICIANS, AND ADVOCATES ENABLE INDIVIDUALS WITH DUP15Q TO LIVE FULL AND PRODUCTIVE LIVES. WE SERVE AS THE LEADER IN RESEARCH, ADVOCACY, AND CLINICAL STANDARDS OF CARE FOR DUP15Q SYNDROME, AND ARE OFTEN THE FIRST POINT OF CONTACT FOR FAMILIES SEARCHING FOR INFORMATION AND RESOURCES REGARDING THEIR CHILD'S DIAGNOSIS. false false 247151 247151 PROGRAM: SCIENTIFIC AND CLINICAL INITIATIVES THE DUP15Q ALLIANCE STANDS AT THE FOREFRONT OF COLLABORATIVE EFFORTS WITH STAKEHOLDERS IN ACADEMIC, CLINICAL, AND PHARMACEUTICAL SPACES. IN 2023-24, WE CO-FUNDED A GRANT OF 100,000 WITH CURE EPILEPSY ON A PROJECT AIMING TO DEVELOP A NEW REPRESENTATIVE DUP15Q MOUSE MODEL WITH VARYING LEVELS OF UBA3E (GENE), A VALUABLE TOOL FOR STUDYING THE SYNDROME AND TESTING POTENTIAL THERAPIES. WE ORCHESTRATED A LONGITUDINAL RESEARCH PROJECT DURING OUR 2023 FAMILY CONFERENCE USING FOLLOW-UP DATA COLLECTION AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q CHANGES OVER TIME. WE PROVIDED AN ADDITIONAL 38,500 TO THE NEWBORN SCREENING PROJECT, WHICH AIMS TO ADD MULTIPLE CHROMOSOME-15 CONDITIONS TO EARLY CHECK, A SCREEN FOR A VARIETY OF CONDITIONS AT BIRTH. WITH UPENN MEDICINE ORPHAN DISEASE CENTER, WE RAISED NEARLY 50,000 FOR A PROJECT FOCUSED ON UNDERSTANDING THE MOLECULAR PATHWAYS INVOLVED IN NERVOUS SYSTEM DEVELOPMENT AND FUNCTION IN MICE, PARTICULARLY IN THE CONTEXT OF AUTISM SPECTRUM DISORDERS, PROVIDING VALUABLE INFORMATION THAT CAN HELP DESIGN THERAPEUTIC STRATEGIES. THIS YEAR WE ALSO PROVIDED OVER 106,000 FOR THE GROWING LADDER LEARNING NETWORK, WHICH HOSTS A GLOBAL NETWORK OF PATIENT DATA, CONNECTS PROVIDERS TO SHARE VITAL INFORMATION, AND CONNECTS PHARMACEUTICAL PROFESSIONALS WITH LOCATIONS TO HOST CLINICAL TRIALS, WITH THE BENEFIT OF HAVING PATIENTS IN PLACE WHEN TRIALS BECOME AVAILABLE. CURRENTLY, THE 16 US AND 2 INTERNATIONAL DUP15Q CLINICS IN THE NETWORK CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING THIS RARE DISORDER. THIS 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. 283528 288671 CONFERENCE AND SCIENCE SYMPOSIUM: THIS YEAR WE HOSTED NEARLY 600 PATIENTS, FAMILY MEMBERS, CAREGIVERS, AND PROFESSIONALS FROM AROUND THE WORLD AT THE 12TH INTERNATIONAL FAMILY CONFERENCE AND SCIENCE SYMPOSIUM DURING A WEEK IN JULY, WHERE ATTENDEES FROM 42 STATES AND 13 COUNTRIES MADE NEW PERSONAL AND PROFESSIONAL CONNECTIONS, MET ONE-ON-ONE WITH CLINICIANS AND/OR GENETIC COUNSELORS, AND ATTENDED SESSIONS ON TOPICS SUCH AS GENETICS, CLINICAL TRIALS, BEHAVIORAL HEALTH, SEIZURES, GI ISSUES, AND MUCH MORE. SEVERAL POPULAR BREAKOUT SESSIONS WERE OFFERED, INCLUDING AGE- AND RELATIONSHIP- SPECIFIC SUPPORT GROUPS AND ROUND-TABLE DISCUSSIONS WITH RESEARCHERS. 102 INDIVIDUALS WITH DUP15Q SYNDROME ATTENDED AT NO COST AND HAD THE OPPORTUNITY TO EXPERIENCE OUR WELCOME PARADE, PARTICIPATE IN ACTIVITIES WITH AN OCCUPATIONAL THERAPIST, AND VISIT WITH FRIENDS IN OUR THEMED STAFFED CARE ROOMS AND AT THE BIRTHDAY BASH. OUR SCIENCE SYMPOSIUM HOSTED 113 RESEARCH AND CLINICAL PROFESSIONALS FOR 32 SPEAKER SESSIONS WITH AN ADDITIONAL 12 ABSTRACTS PRESENTED. WE PROVIDED OVER 70,000 IN COMPED REGISTRATION FEES, HOTEL NIGHTS, AND TRAVEL ASSISTANCE VIA SCHOLARSHIPS AND EARNED REWARDS, AND ADDITIONALLY, THE ALLIANCE COVERED OVER 117,000 IN DIRECT CONFERENCE COSTS ABOVE THOSE COVERED BY REGISTRATION AND SPONSORSHIP REVENUE. 249386 EDUCATION AND OUTREACH PROGRAMS: DUP15Q ALLIANCE PROVIDES PERSONAL CONNECTIONS, SUPPORT, COMMUNITY AWARENESS, AND EDUCATION TO FAMILIES AND CAREGIVERS OF THOSE AFFECTED BY DUP15Q SYNDROME. IN 2023 WE LAUNCHED A SEARCHABLE RESOURCE NAVIGATOR TO GUIDE FAMILIES TO NON-PROFIT ASSISTANCE, COMMUNITY SUPPORT, AND FUNDING SOURCES; WE PROVIDED 157 LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS AT NO COST TO FAMILIES IN CRISIS; OUR NEW FAMILY INTAKE MANAGER MENTORED 81 NEW DUP15Q ALLIANCE FAMILIES AND PROVIDED GUIDANCE TO NAVIGATE THEIR NEW DIAGNOSIS (MANY FAMILIES FIND IT HELPFUL TO TALK TO SOMEONE WHO CAN ANSWER THEIR QUESTIONS FIRSTHAND); WE LAUNCHED AN INTERACTIVE GUIDE FOR NEWLY DIAGNOSED FAMILIES AND AN ON-DEMAND EDUCATION SECTION ON OUR WEBSITE, TO ASSIST CAREGIVERS IN GETTING THE CRITICAL INFORMATION THEY NEED IN THE DAYS AFTER RECEIVING A DIAGNOSIS OF DUP15Q SYNDROME; WE NOW HAVE 16 COMMUNITY MEMBERS THAT COMPLETED PEER- SUPPORT TRAINING WHO CAN REACH OUT TO FAMILIES IN CRISIS AND/OR MODERATE A VARIETY OF RECURRING SUPPORT GROUPS; 27 WRAPPED IN LOVE BLANKETS WERE SENT TO FAMILIES DURING A HOSPITAL STAY; 12 COMPASSION EXPERIENCE KITS WERE SENT TO TEACH SCHOOL CHILDREN ABOUT DUP15Q SYNDROME; WE BEGAN DEVELOPMENT OF A TRANSITION TO ADULTHOOD ROAD MAP WITH RESOURCES, EDUCATION, AND TIPS FOR CAREGIVERS; AND WE PROVIDED GRANTS AND STAFF ASSISTANCE FOR 5 REGIONAL GATHERINGS OF FAMILIES AND CAREGIVERS. 780065 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 2 0 7 true false false false false true true true true false false false false false false false false X 9 9 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 SOPHIA CACCIATORE BOARD MEMBER 5.00 X 0 0 0 LISA FEEHERY CO-CHAIR 10.00 X X 0 0 0 JOE IVAN SECRETARY/TR 5.00 X X 0 0 0 ANNE KARCH CO-CHAIR 10.00 X X 0 0 0 ELINA MARCHENKO BOARD MEMBER 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 105000 1 false false false 545602 3864 545602 CONFERENCE REVENUE 288671 288671 288671 8695 8695 88007 9338 78669 OTHER INCOME 990 990 990 922627 289661 8695 247151 247151 284550 216415 50964 17171 22423 17042 4036 1345 6943 6943 7916 7916 243092 243092 MISCELLANEOUS EXPENSES 53950 15929 13054 24967 SCIENCE SYMPOSIUM 40436 40436 RESEARCH 6350 6350 912811 780065 81347 51399 224952 226183 293979 321318 67497 106149 2859 14190 14886 603477 668536 26993 62068 24040 53080 15075 80073 101183 X 523404 567096 257 523404 567353 603477 668536 9816 34133 X false true X true false X 515718 483391 569701 454102 545602 2568514 158662 104145 377668 640475 10710 24057 34767 526428 507448 728363 558247 923270 3243756 3243756 13430 11665 12714 9253 8695 55757 13430 11665 12714 9253 8695 55757 539858 519113 741077 567500 931965 3299513 0.98310 0.98150 0.02000 0.02000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 956760 34133 34133 922627 922627 912811 912811 912811 VARIOUS EVENTS 84090 84090 9338 84090 84090 9338 9338 74752 true FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS 75 EXECUTIVE DRIVE STE 327 AURORA IL 60504 593092842 501C3 38500 NEWBORN SCREENING CURE EPILEPSY 420 N WABASH AVE STE 650 CHICAGO IL 60611 364253176 501C3 24040 RESEARCH VARIOUS 184611 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. WE ENVISION A WORLD WHERE FAMILIES, CLINICIANS, AND ADVOCATES ENABLE INDIVIDUALS WITH DUP15Q TO LIVE FULL AND PRODUCTIVE LIVES. WE SERVE AS THE LEADER IN RESEARCH, ADVOCACY, AND CLINICAL STANDARDS OF CARE FOR DUP15Q SYNDROME, AND ARE OFTEN THE FIRST POINT OF CONTACT FOR FAMILIES SEARCHING FOR INFORMATION AND RESOURCES REGARDING THEIR CHILD'S DIAGNOSIS. FORM 990, PAGE 2, PART III, LINE 4A PROGRAM: SCIENTIFIC AND CLINICAL INITIATIVES THE DUP15Q ALLIANCE STANDS AT THE FOREFRONT OF COLLABORATIVE EFFORTS WITH STAKEHOLDERS IN ACADEMIC, CLINICAL, AND PHARMACEUTICAL SPACES. IN 2023-24, WE CO-FUNDED A GRANT OF 100,000 WITH CURE EPILEPSY ON A PROJECT AIMING TO DEVELOP A NEW REPRESENTATIVE DUP15Q MOUSE MODEL WITH VARYING LEVELS OF UBA3E (GENE), A VALUABLE TOOL FOR STUDYING THE SYNDROME AND TESTING POTENTIAL THERAPIES. WE ORCHESTRATED A LONGITUDINAL RESEARCH PROJECT DURING OUR 2023 FAMILY CONFERENCE USING FOLLOW-UP DATA COLLECTION AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q CHANGES OVER TIME. WE PROVIDED AN ADDITIONAL 38,500 TO THE NEWBORN SCREENING PROJECT, WHICH AIMS TO ADD MULTIPLE CHROMOSOME-15 CONDITIONS TO EARLY CHECK, A SCREEN FOR A VARIETY OF CONDITIONS AT BIRTH. WITH UPENN MEDICINE ORPHAN DISEASE CENTER, WE RAISED NEARLY 50,000 FOR A PROJECT FOCUSED ON UNDERSTANDING THE MOLECULAR PATHWAYS INVOLVED IN NERVOUS SYSTEM DEVELOPMENT AND FUNCTION IN MICE, PARTICULARLY IN THE CONTEXT OF AUTISM SPECTRUM DISORDERS, PROVIDING VALUABLE INFORMATION THAT CAN HELP DESIGN THERAPEUTIC STRATEGIES. THIS YEAR WE ALSO PROVIDED OVER 106,000 FOR THE GROWING LADDER LEARNING NETWORK, WHICH HOSTS A GLOBAL NETWORK OF PATIENT DATA, CONNECTS PROVIDERS TO SHARE VITAL INFORMATION, AND CONNECTS PHARMACEUTICAL PROFESSIONALS WITH LOCATIONS TO HOST CLINICAL TRIALS, WITH THE BENEFIT OF HAVING PATIENTS IN PLACE WHEN TRIALS BECOME AVAILABLE. CURRENTLY, THE 16 US AND 2 INTERNATIONAL DUP15Q CLINICS IN THE NETWORK CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING THIS RARE DISORDER. THIS 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 4B CONFERENCE AND SCIENCE SYMPOSIUM: THIS YEAR WE HOSTED NEARLY 600 PATIENTS, FAMILY MEMBERS, CAREGIVERS, AND PROFESSIONALS FROM AROUND THE WORLD AT THE 12TH INTERNATIONAL FAMILY CONFERENCE AND SCIENCE SYMPOSIUM DURING A WEEK IN JULY, WHERE ATTENDEES FROM 42 STATES AND 13 COUNTRIES MADE NEW PERSONAL AND PROFESSIONAL CONNECTIONS, MET ONE-ON-ONE WITH CLINICIANS AND/OR GENETIC COUNSELORS, AND ATTENDED SESSIONS ON TOPICS SUCH AS GENETICS, CLINICAL TRIALS, BEHAVIORAL HEALTH, SEIZURES, GI ISSUES, AND MUCH MORE. SEVERAL POPULAR BREAKOUT SESSIONS WERE OFFERED, INCLUDING AGE- AND RELATIONSHIP- SPECIFIC SUPPORT GROUPS AND ROUND-TABLE DISCUSSIONS WITH RESEARCHERS. 102 INDIVIDUALS WITH DUP15Q SYNDROME ATTENDED AT NO COST AND HAD THE OPPORTUNITY TO EXPERIENCE OUR WELCOME PARADE, PARTICIPATE IN ACTIVITIES WITH AN OCCUPATIONAL THERAPIST, AND VISIT WITH FRIENDS IN OUR THEMED STAFFED CARE ROOMS AND AT THE BIRTHDAY BASH. OUR SCIENCE SYMPOSIUM HOSTED 113 RESEARCH AND CLINICAL PROFESSIONALS FOR 32 SPEAKER SESSIONS WITH AN ADDITIONAL 12 ABSTRACTS PRESENTED. WE PROVIDED OVER 70,000 IN COMPED REGISTRATION FEES, HOTEL NIGHTS, AND TRAVEL ASSISTANCE VIA SCHOLARSHIPS AND EARNED REWARDS, AND ADDITIONALLY, THE ALLIANCE COVERED OVER 117,000 IN DIRECT CONFERENCE COSTS ABOVE THOSE COVERED BY REGISTRATION AND SPONSORSHIP REVENUE. FORM 990, PAGE 2, PART III, LINE 4C EDUCATION AND OUTREACH PROGRAMS: DUP15Q ALLIANCE PROVIDES PERSONAL CONNECTIONS, SUPPORT, COMMUNITY AWARENESS, AND EDUCATION TO FAMILIES AND CAREGIVERS OF THOSE AFFECTED BY DUP15Q SYNDROME. IN 2023 WE LAUNCHED A SEARCHABLE RESOURCE NAVIGATOR TO GUIDE FAMILIES TO NON-PROFIT ASSISTANCE, COMMUNITY SUPPORT, AND FUNDING SOURCES; WE PROVIDED 157 LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS AT NO COST TO FAMILIES IN CRISIS; OUR NEW FAMILY INTAKE MANAGER MENTORED 81 NEW DUP15Q ALLIANCE FAMILIES AND PROVIDED GUIDANCE TO NAVIGATE THEIR NEW DIAGNOSIS (MANY FAMILIES FIND IT HELPFUL TO TALK TO SOMEONE WHO CAN ANSWER THEIR QUESTIONS FIRSTHAND); WE LAUNCHED AN INTERACTIVE GUIDE FOR NEWLY DIAGNOSED FAMILIES AND AN ON-DEMAND EDUCATION SECTION ON OUR WEBSITE, TO ASSIST CAREGIVERS IN GETTING THE CRITICAL INFORMATION THEY NEED IN THE DAYS AFTER RECEIVING A DIAGNOSIS OF DUP15Q SYNDROME; WE NOW HAVE 16 COMMUNITY MEMBERS THAT COMPLETED PEER- SUPPORT TRAINING WHO CAN REACH OUT TO FAMILIES IN CRISIS AND/OR MODERATE A VARIETY OF RECURRING SUPPORT GROUPS; 27 WRAPPED IN LOVE BLANKETS WERE SENT TO FAMILIES DURING A HOSPITAL STAY; 12 COMPASSION EXPERIENCE KITS WERE SENT TO TEACH SCHOOL CHILDREN ABOUT DUP15Q SYNDROME; WE BEGAN DEVELOPMENT OF A TRANSITION TO ADULTHOOD ROAD MAP WITH RESOURCES, EDUCATION, AND TIPS FOR CAREGIVERS; AND WE PROVIDED GRANTS AND STAFF ASSISTANCE FOR 5 REGIONAL GATHERINGS OF FAMILIES AND CAREGIVERS. 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.