2026-09-14T10:43:43-06:00 2025-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2025-01-01 810769799 CDG Care % Andrea Miller CDGC 3142494060 PO Box 38832 Colorado Springs CO 80937 ANDREA MILLER Executive Director 3142494060 2026-09-14 true JOHN MULLINS P01429307 2027706371 2026-09-14 2025 Andrea Miller PO Box 38832 Colorado Springs CO 80937 706435 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. 13 12 2 10 0 0 501763 686815 12255 0 16985 19620 0 531003 706435 189412 281143 0 17037 94026 0 27523 137688 267243 344137 642412 186866 64023 716502 877369 7012 105871 709490 771498 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 465639 240152 Research and Development: In 2025, CDG CARE significantly expanded its investment in patient-centered research through direct funding of basic, translational, and therapeutic research initiatives focused on Congenital Disorders of Glycosylation (CDG). Research support included contracts with academic institutions and biotechnology partners to advance drug repurposing, gene therapy, natural history, and disease modeling across multiple CDG types. The organization also launched the CDG Clinical & Research Network (CDG CRN) to strengthen international collaboration among clinicians, researchers, industry partners, and patient advocacy organizations while advancing patient-prioritized research initiatives. In addition, CDG CARE was awarded a five-year Rare As One Network grant from the Chan Zuckerberg Initiative to further develop research infrastructure, patient engagement, and collaborative scientific programs for the global CDG community. 57140 40991 Patient/Family Travel & Equipment Grant Program: In 2025, CDG CARE continued providing direct financial assistance and support services to individuals and families affected by CDG through the Emmetts Legacy Fund, which assists families with specialized medical equipment, adaptive devices, therapeutic resources, and travel to receive expert medical care. The organization also expanded patient outreach, educational resources, and community engagement opportunities designed to improve quality of life and connect families with specialized support services and research opportunities. 28904 Education & Awareness: In 2025, CDG CARE continued to expand global educational programming for patients, families, healthcare professionals, and researchers. Educational efforts included development of new digital resources, expansion of professional educational webinars, publication of quarterly educational newsletters, and continued awareness initiatives highlighting CDG research, clinical care, and emerging therapeutic opportunities. Planning also began for future scientific and educational conferences designed to foster collaboration and accelerate advances in diagnosis, treatment, and patient care. 551683 true true false false false false false false false false false false false false false true true 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 3 0 true 2 true false false false false false false false false false false false false X 13 12 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 70000 0 0 Christa Thoma Treasurer 8.00 0.00 X X 0 0 0 Karen Morici Director 2.00 0.00 X 0 0 0 Meral Omurtag Director 2.00 0.00 X 0 0 0 Kara Berasi Chair 8.00 0.00 X 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 Secretary 4.00 0.00 X X 0 0 0 Amy Dann Vice Chair 4.00 0.00 X X 0 0 0 Stephanie Giannikoulis Director 2.00 0.00 X 0 0 0 Lauryn Mason Director 2.00 0.00 X 0 0 0 Chelsea Sims Director 2.00 0.00 X 0 0 0 70000 0 0 0 false false false 686815 686815 19620 19620 0 706435 0 0 19620 X 240152 240152 40991 40991 70000 44681 19692 5627 16904 10790 4755 1359 7122 4546 2003 573 19787 19787 4792 4792 194651 186679 1536 6436 9482 2278 1579 5625 10049 3690 6131 228 15626 15626 9925 2250 7675 2931 2931 642412 551683 63206 27523 373774 243035 5471 11794 16004 337257 606536 716502 877369 7012 35956 69915 7012 105871 X 183000 128536 526490 642962 709490 771498 716502 877369 X 64023 3235 -5250 X false true X true false X 266117 715022 486368 501763 686815 2656085 266117 715022 486368 501763 686815 2656085 380331 2275754 19 29 6895 16985 19620 43548 2699633 0.84300 0.83910 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 704878 3235 3235 701643 4792 4792 706435 637620 637620 4792 4792 642412 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 Icahn School of Medicine One Gustave L Levy Place New York NY 10029 136171197 501c3 172500 RESEARCH GRANT The Childrens Hospital of Phil 3401 Civic Center Blvd Philadelphia PA 19104 232237932 501c3 35000 RESEARCH GRANT Washington University in St Louis 7425 Forsyth Blvd MSC 1299-414-355 Saint Louis MO 63105 430653611 501c3 12500 RESEARCH GRANT Regents of the University of Cal SF 2001 The Embarcadero 3rd Flr San Francisco CA 94133 942829914 501c3 20152 RESEARCH GRANT 4 ELF Grants 23 40991 Monitoring procedures (Part I, line 2) CDG Care accepts applications from research institutions and patientsfamilies 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. Explanation of other changes in net assets or fund balances Part XI line 9 Adjustment to tie net assets to Audit List of other fees for services expenses Part IX line 11g Research Contract Services: $137,130 Other Professional Fees: $57,521