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CZI grant activities

Boston Children’s Hospital and the chILD Foundation were awarded a CZI joint grant that will provide funding for programs for 4 years. The chILD Foundation programming requirements are as follows:

YearGrant Goals
2023-Complete a Needs assessment survey and focus groups of chILD families to define priorities and barriers to both care and research participation, which will include questions to identify ancestry- or cultural-specific factors.
-Create an educational series that include Social media/web-based information sessions
-Create of a National Patient Advisory Council
2024-Continue and expand Social media/web-based information sessions
-Host 2-4 local Patient events at existing centers to pilot the parent support program
-Host a first annual web-based research seminar for families of children with chILD
-Circulate newsletter via local PACs and social media
2025-Continue programs from Y1/Y2
-Expand Parent education days and support programs to other centers and locations
-Develop educational resources for patients, posted on chILD Foundation webpage.
2026-Continue to expand patient programming
-Post summary of findings with list of new chILD candidate genes and their clinical implications.