Program areas at CDG Care
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.
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.
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.