2024-11-04T15:05:53-06:00 2023-12-31 430831507 ANDERS MINKLER HUBER & HELM LLP 800 MARKET STREET SUITE 500 ST LOUIS MO 631012501 990 2023-01-01 810769799 CDG CARE CDGC 3142494060 PO BOX 38832 COLORADO SPRINGS CO 80937 ANDREA MILLER PRESIDENT 3142494060 2024-11-01 1 1 JEANNE DEE P01082093 3146555500 2023 2024-10-15 13:58:12Z ANDREA MILLER 470 CARDIFF CIRCLE COLORADO SPRINGS CO 80906 491830 0 X WWW.CDGCARE.ORG X 2014 CO TO PROMOTE GREATER AWARENESS AND UNDERSTANDING OF CDG, TO PROVIDE INFORMATION AND SUPPORT TO FAMILIES AFFECTED BY CDG, AND TO ADVOCATE FOR AND FUND SCIENTIFIC RESEARCH TO ADVANCE TREATMENTS FOR ALL CDGS. 10 10 0 0 0 0 715024 486633 0 0 29 5197 0 0 715053 491830 344083 471944 0 0 0 0 0 0 0 52533 53729 396616 525673 318437 -33843 598467 522624 0 0 598467 522624 X CDG CARE IS A NONPROFIT ORGANIZATION FOUNDED BY PARENTS SEEKING INFORMATION AND SUPPORT FOR A GROUP OF MEDICAL DISORDERS KNOWN AS CONGENITAL DISORDERS OF GLYCOSYLATION (CDG). OUR MISSION IS TO PROMOTE GREATER AWARENESS AND UNDERSTANDING OF CDG, TO PROVIDE INFORMATION AND SUPPORT TO FAMILIES AFFECTED BY CDG, AND TO ADVOCATE FOR AND FUND SCIENTIFIC RESEARCH TO ADVANCE TREATMENTS FOR ALL CDGS. 0 0 467185 438617 RESEARCH AND DEVELOPMENT - IN 2023, CDG CARE FUNDED 2 RESEARCH GRANTS AND 6 RESEARCH PROJECTS. THE FIRST GRANT WAS PAID TO WASHINGTON UNIVERSITY OF ST. LOUIS. THIS GRANT WAS $50,000 AND SUPPORTED RESEARCH TO INVESTIGATE THE VIABILITY OF TREATMENT OPTIONS IN CDG ZEBRAFISH MODELS. THE SECOND GRANT WAS PAID TO NATIONWIDE CHILDREN'S RESEARCH CENTER. THIS GRANT WAS $105,655 AND SUPPORTED RESEARCH TO DEVELOP IN VITRO MODELLING FOR GENE THERAPY IN GMPPA-CDG ORGANOIDS. IN ADDITION TO THESE ABOVE 2 GRANT AWARDS, CDG CARE CONTINUED AND EXPANDED IT'S 2022 PATIENT-DRIVEN RESEARCH INITIATIVE WHICH INVOLVES CONTRACTING FOR DIRECT RESEARCH OF DRUG REPURPOSING ON SEVERAL CDG TYPES. THESE CONTRACTS WERE MADE WITH THE WASHINGTON UNIVERSITY IN ST. LOUIS TO ADVANCE ALG8-CDG TREATMENT MODALITIES VIA THE RESEARCH MODEL USING ZEBRAFISH IN THE AMONG OF $35,000 AND SUPPORT FOR AN ADDITIONAL 5 RESEARCH PROJECTS WERE CONTRACTED THROUGH PERLARA PBC AND ARE ONGOING TO ADVANCE DRUG REPURPOSING RESEARCH FOR PIGA-CDG, PIGN-CDG, PIGW-CDG, GMPPA-CDG AND PIGS-CDG. 46455 33327 PATIENT/FAMILY TRAVEL & EQUIPMENT GRANT PROGRAM - IN 2023, CDG CARE CONTINUED TO SUPPORT A PROGRAM THAT PROVIDES FINANCIAL SUPPORT TO PATIENTS AND FAMILIES TO OBTAIN MUCH NEEDED THERAPEUTIC/MEDICAL EQUIPMENT AND PROVIDE FUNDING SUPPORT FOR FAMILIES TO TRAVEL TO SPECIALTY MEDICAL CENTERS TO RECEIVE CONSULTATION AND MEDICAL GUIDANCE FROM EXPERTS IN CDG. THROUGH THE THERAPEUTIC/MEDICAL EQUIPMENT GRANT PROGRAM, 14 PATIENTS RECEIVED EQUIPMENT GRANTS COMPRISING OF $28,463. THROUGH THE TRAVEL SUPPORT GRANT PROGRAM, PATIENTS/FAMILIES RECEIVED GRANTS COMPRISING A TOTAL OF $2,708. 10380 0 CDG BIENNIAL CONFERENCE - IN 2023, CDG CARE BEGAN PREPARATIONS TO HOST THE UPCOMING 5TH BIENNIAL PROFESSIONAL AND EDUCATIONAL CONFERENCE ON CDG TO BE HELD IN MARCH 2024. THROUGH THESE PREPARATIONS, AN EVENT VENUE DEPOSIT WAS PAID OUT IN 2023, AND THE REMAINING CONFERENCE EXPENSES WILL BE PAID OUT AFTER THE EVENT IN MARCH, 2024. THE CONFERENCE PLANNING PREPARED TO HOST 300+ PROFESSIONALS AND FAMILY MEMBERS TO PARTICIPATE IN A 3-DAY EDUCATIONAL CONFERENCE TO ADVANCE CDG EDUCATION, INFORMATION AND OPPORTUNITIES TO DEVELOP TREATMENTS IN THE FUTURE. 0 0 524020 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 1 0 0 0 0 1 1 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 X 10 10 0 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0 0 0 0 0 CO X ANDREA MILLER 3142494060 PO BOX 38832 COLORADO SPRINGS CO 80937 X ANDREA MILLER PRESIDENT 15.00 X X 0 0 0 CHRISTA THOMA TREASURER 4.00 X X 0 0 0 KAREN MORICI BOARD MEMBER 2.00 X 0 0 0 MERAL OMURTAG BOARD MEMBER 2.00 X 0 0 0 KARA BERASI BOARD MEMBER 2.00 X 0 0 0 HEATHER CONNERAN BOARD MEMBER 1.00 X 0 0 0 LEWIS FRANKLIN BOARD MEMBER 1.00 X 0 0 0 KAREN OOSTERHOUS BOARD MEMBER 1.00 X 0 0 0 ASHLEIGH LINTHICUM BOARD MEMBER 1.00 X 0 0 0 AMY DANN BOARD MEMBER 1.00 X 0 0 0 0 0 0 0 0 0 0 0 486633 486633 5197 5197 491830 5197 0 0 438617 438617 14194 14194 19133 19133 6903 6903 19800 19800 324 324 4415 4415 146 146 1423 1423 COMPLIANCE & WEBSITE 8712 8712 AUCTIONEER & FACILITY R 8280 8280 BOARD TRAVEL & MEETINGS 3486 3486 BANK FEES 230 10 220 10 10 525673 524020 1653 0 0 25000 598467 497624 598467 522624 0 0 X 190395 201590 408072 321034 598467 522624 598467 522624 -33843 -42000 0 X X 1 X 0 0 0 X 112968 91297 266117 715022 486368 1671772 112968 91297 266117 715022 486368 1671772 1671772 67 35 19 29 6895 7045 1678817 0.99580 0.99990 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X PART X, LINE 2: THE ORGANIZATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE (THE "CODE"), EXCEPT ON NET INCOME DERIVED FROM UNRELATED BUSINESS ACTIVITIES AS DEFINED IN THE CODE. ACCORDINGLY, THE ORGANIZATION FILES AS A TAX EXEMPT ORGANIZATION. THE ORGANIZATION FOLLOWS GUIDANCE ISSUED BY THE FASB ON ACCOUNTING FOR INCOME TAXES AND HAS EVALUATED ITS TAX POSITIONS, EXPIRING STATUTES OF LIMITATIONS, AUDITS, PROPOSED SETTLEMENTS, CHANGES IN TAX LAW AND NEW AUTHORITATIVE RULINGS, AND BELIEVES THAT NO PROVISION FOR INCOME TAXES IS NECESSARY TO COVER ANY UNCERTAIN TAX POSITIONS. THE ORGANIZATION'S RETURNS FOR TAX YEARS 2020 AND LATER REMAIN SUBJECT TO EXAMINATION BY TAXING AUTHORITIES. 0 0 0 0 0 0 0 0 0 0 EQUIPMENT/TRAVEL SUPPORT NORTH AMERICA, CENTRAL 10 19133 WIRE TRANSFER INVOICE/RECEIPTS 0 0 0 0 0 0 PART III 1 (G) CDG CARE ACCEPTS APPLICATIONS FROM PATIENTS/FAMILIES TO REQUEST MEDICAL/THERAPEUTIC EQUIPMENT SUPPORT AND/OR TRAVEL SUPPORT TO SEEK EXPERT MEDICAL CONSULTATION OR TO ATTEND THE CDG EDUCATIONAL CONFERENCES THAT ARE HELD IN THE USA. BOTH OF THESE APPLICATIONS ARE ACCEPTED ON A ROLLING BASIS. CDG CARE HAS ESTABLISHED A FAMILY GRANT ASSISTANCE COMMITTEE MADE UP OF VOLUNTEER BOARD OF DIRECTOR MEMBERS AND MEDICAL ADVISORY MEMBERS WHO OVERSEE THIS GRANT PROGRAM. APPLICATIONS ARE REVIEWED BY THE COMMITTEE AND APPROVED UP TO LIMITS ESTABLISHED IN THE GRANT PROGRAM POLICIES. FUNDS ARE EITHER PAID DIRECTLY TO VENDORS, OR FAMILIES ARE REIMBURSED FOR EXPENSES INCURRED ONCE RECEIPTS HAVE BEEN SUBMITTED TO CDG CARE. 1 PERLARA PBC 2625 ALCATRAZ AVE BERKELEY CA 947052702 465080858 0 244962 RESEARCH PROJECTS WASHINGTON UNIVERSITY OF ST LOUIS 700 ROSEDALE AVE ST LOUIS MO 63110 430653611 0 85000 RESEARCH GRANT NATIONWIDE CHILDRENS RESEARCH 700 CHILDRENS DR COLUMBUS OH 43205 316056230 0 108655 RESEARCH GRANT MEDICAL TRAVEL GRANTS 2 1820 TRAVEL AND MEDICAL/THERAPEUTIC EQUIPMENT 5 10218 SCHEDULE I PART II CDG CARE ACCEPTS APPLICATIONS FROM RESEARCH INSTITUTIONS AND PATIENTS/FAMILIES FOR FUNDING SUPPORT THROUGH GRANTS. CDG CARE HAS ESTABLISHED A RESEARCH COMMITTEE MADE UP OF VOLUNTEER BOARD OF DIRECTOR MEMBERS AND MEDICAL ADVISORY MEMBERS WHO OVERSEE THE RESEARCH GRANT PROGRAM. APPLICATIONS ARE RECEIVED ONCE EACH YEAR, REVIEWED, AND DISCUSSED BY AN INTERDISCIPLINARY REVIEW TEAM, AND PRESENTED TO THE BOARD OF DIRECTORS FOR FUNDING. ALL RESEARCH GRANTS ARE FOR THE DURATION OF 12 MONTHS. GRANTEES ARE REQUIRED TO SUBMIT PERIODIC PROGRESS AND EXPENSE REPORTS AND FINAL REPORTS TO CDG CARE AT THE END OF THE GRANT TERM. FORM 990, PART VI, SECTION A, LINE 8B DOCUMENTATION OF MEETINGS OF EACH COMMITTEE TO ACT OF BEHALF OF THE GOVERNING BODY. WHILE CDG CARE HAS MANY COMMITTEES COMPRISED OF VOLUNTEER BOARD OF DIRECTOR MEMBERS AND MEDICAL ADVISORY MEMBERS, THE COMMITTEES ARE NOT GRANTED AUTHORITY TO ACT OF BEHALF OF THE GOVERNING BODY (BOARD OF DIRECTORS). EACH DECISION RECOMMENDATION MADE BY THE INDIVIDUAL COMMITTEES IS SENT OUT TO THE BOARD OF DIRECTORS (THE GOVERNING BODY) FOR FINAL REVIEW AND APPROVAL. FORM 990, PART VI, SECTION B, LINE 11B THE TREASURER AND PRESIDENT OF CDG CARE WORK TOGETHER TO COMPLETE THE DRAFT OF FORM 990 TO PREPARE FOR FILING BY AN EXTERNAL ACCOUNTANT. AT EACH QUARTERLY BOARD OF DIRECTOR MEETING, THE TREASURER PROVIDES AN UPDATE TO THE BOARD MEMBERS, KEEPING THEM INFORMED OF ORGANIZATIONAL REVENUES AND LETTING THEM KNOW WHICH SPECIFIC TAX FORMS WILL BE FILED FOR THE CURRENT YEAR, AS WELL AS IF AN EXTENSION HAS BEEN REQUESTED. AT THE QUARTERLY BOARD OF DIRECTORS MEETING FOLLOWING THE FORM 990 AND TAX FILING, THE TREASURER INFORMED THE BOARD MEMBERS THAT THE TAXES HAVE BEEN COMPLETED TO SHARE A COPY OF THE FORM 990 WITH MEMBERS WHO WOULD LIKE TO REVIEW IT. FORM 990, PART VI, SECTION B, LINE 12C CDG CARE REQUIRES ALL BOARD MEMBERS TO ACKNOWLEDGE CONFLICT OF INTEREST POLICY UPON JOINING THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION C, LINE 19 CDG CARE MAINTAINS ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY RECORDS AND FINANCIAL STATEMENTS WITH THE PRESIDENT'S RECORD KEEPING AND FILINGS. ALL DOCUMENTS ARE AVAILABLE TO THE PUBLIC UPON REQUESTS BUT ARE NOT SHARED PUBLICLY IN ANY EMAILS OR ON INTERNET PAGES OR PLATFORMS. ALL DOCUMENTS AND TAX FILING INFORMATION ARE SUBMITTED TO GUIDESTAR TO APPLY FOR CDG CARE'S SEAL OF TRANSPARENCY EACH YEAR. THROUGH THIS SERVICE AND ACCREDITATION, CDG CARE'S FORM 990 AND FORM 990 EZ FROM PRIOR YEARS IS AVAILABLE TO THE PUBLIC AS WELL. FORM 990, PART XII, LINE 2C: NO CHANGE FROM PRIOR YEAR