CSNK2A1 Foundation is focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives. We have a 3-board structure that supports our ability to accelerate the path to treatment: It consists of the BOARD OF DIRECTORS, SCIENTIFIC ADVISORY BOARD and our PARENT ADVISORY BOARD. We have extensive and lofty objectives for the next 3 years which will only be achieved by the entire OCNDS community working together. Our 3 year goals are to:
*Engage, educate and empower the global OCNDS patient community and strengthen the patient voice;
*Remove barriers to participation such as language, scientific knowledge, and socioeconomic;
*Provide opportunities for families, clinicians and researchers to work together to set research priorities;
*Augment all of our Boards - Board of Directors, Scientific Advisory Board, and Parent Advisory Board - with diverse global experts;
*Continue to develop reagents (e.g., IPSC cells, animal models) and make them widely available to researchers which will make it easier for researchers to develop treatments for OCNDS and gain a better understanding of OCNDS;
*Launch high-impact studies with researchers around the global to investigate the cause, key cell types, and new treatment targets for OCNDS;
*Maintain and grow our patient registry program;
*Facilitate and plan in-person and virtual family meetings to foster hope, community, collaboration and a further understanding of OCNDS;
*Continue to support the CSNK2A1/OCNDS international natural history study at Simons Searchlight and to grow our biobank;
*Collaborate, brainstorm, and work with other rare diseases groups;
*Raise the profile of OCNDS through media attention, public awareness campaigns, and advocacy; and
*Orchestrate expansion of fundraising efforts.
