2025-11-06T07:55:17-05:00 2024-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2024-01-01 810769799 CDG Care % Andrea Miller CDGC 3142494060 PO Box 38832 Colorado Springs CO 80937 ANDREA MILLER Executive Director 3142494060 2025-11-06 true true JOHN MULLINS P01429307 2027706371 2025-11-06 2024 2025-03-06 01:10:19Z Andrea Miller PO Box 38832 Colorado Springs CO 80937 531003 false 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 9 1 10 0 0 486633 501763 12255 5197 16985 0 491830 531003 471944 189412 0 17037 0 13884 53729 137688 525673 344137 -33843 186866 522624 716502 7012 522624 709490 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. false false 167374 152100 Research and Development: In 2024, CDG CARE continued and expanded its 2022 patient-driven research initiative which involves contracting for direct research of drug repurposing on several CDG types. These contracts were made with Washington University in St. Louis to advance ALG8-CDG treatment modalities via the research model using zebrafish and Nationwide Childrens Hospital Research Center to advance in vivo models for gene therapy model development in PIGA-CDG. In addition, CDG CARE supported individual research projects contracted through Perlara PBC and are ongoing to advance drug repurposing research for GMPPA-CDG, ALG8-CDG, ALG13-CDG, ALG1-CDG, PMM2-CDG, PIGA-CDG, PIGN-CDG, PIGW-CDG and PIGS-CDG. 99065 12255 CDG Biennial Conference: In 2024, CDG CARE hosted the 5th biennial professional and educational conference on CDG. While many preliminary expenses were incurred in 2023, the majority of expenses are paid out during the event, which was in March 2024. The conference hosted 330 professionals and family members who participated in a 3-day educational conference to advance CDG education, information and opportunities to develop treatments in the future. 38146 37312 Patient/Family Travel & Equipment Grant Program: In 2024, CDG CARE continued to support a program that provides financial support to patients and families to obtain much needed therapeutic/medical equipmen4 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 and 16 families received travel support through the family grant program. 304585 true true false false false false false false false false false false false false false true false false false false false false false false false false false true true false false false false false false false false false false false false false false false false false false true 0 0 true 1 true false false false false false false false false false false X 10 9 false false false false false false false true false false false false true true true false false false false false CO X The Organization 3142494060 PO Box 38832 Colorado Springs CO 80937 Andrea Miller Executive Director 40.00 0.00 X X 13462 0 0 Meral Omurtag Director 2.00 0.00 X 0 0 0 Heather Conneran Director 2.00 0.00 X 0 0 0 Lewis Franklin Director 2.00 0.00 X 0 0 0 Karen Oosterhous Director 2.00 0.00 X 0 0 0 Ashleigh Linthicum Director 2.00 0.00 X 0 0 0 Amy Dann Director 2.00 0.00 X 0 0 0 Christa Thoma Treasurer 8.00 0.00 X X 0 0 0 Karen Morici Chair 8.00 0.00 X X 0 0 0 Kara Berasi Vice Chair 4.00 0.00 X X 0 0 0 13462 0 0 0 false false false 501763 501763 Conference Registration 900099 12255 12255 12255 16985 16985 0 531003 12255 0 16985 152100 152100 37312 37312 13462 10097 3365 3575 2681 894 13500 13500 11129 829 569 9731 7934 609 3408 3917 5809 3064 2509 236 1355 1355 96538 96538 1423 1423 344137 304585 25668 13884 373774 5471 25000 497624 337257 522624 716502 7012 0 7012 X 201590 183000 321034 526490 522624 709490 522624 716502 186866 0 X true X false true false X 91297 266117 715022 486368 501763 2060567 91297 266117 715022 486368 501763 2060567 311355 1749212 35 19 29 6895 16985 23963 2084530 0.83910 0.99580 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740) 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 Organizations returns for tax years 2021 and later remain subject to examination by taxing authorities. true Perlara 2625 Alcatraz Ave Berkeley CA 947052702 465080858 68048 RESEARCH PROJECTS Nationwide Childrens Research Ctr 700 Childrens Dr Columbus OH 43205 316056230 63615 RESEARCH GRANT Washington University in St Louis 1 Brookings Drive St Saint Louis MO 63130 430653611 19500 RESEARCH GRANT 3 ELF Grants 16 37312 Monitoring procedures (Part I, line 2) 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. Committee meeting documentation Part VI 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 governing body review Part VI line 11 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. Conflict of interest policy compliance Part VI line 12c CDG Care requires all board members to acknowledge conflict of interest policy upon joining The Board of Directors. Governing documents etc available to public Part VI line 19 CDG Care maintains all governing documents, conflict of interest policy records and financial statements with the presidents 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 Cares seal of transparency each year. Through this service and accreditation, CDG Cares form 990 and form 990 ez from prior years is available to the public as well. Not undergone required audits or steps for audit part XII line 3b No change from prior year