research – CSNK2A1 Foundation

April 2020 Research Update

April 20, 2020April 20, 2020Jennifer SillsLeave a comment

Dear Donors, Supporters, and Friends, Today would have been our 2nd annual Drive for Diagnosis Golf Classic at El Caballero Country Club. We want to thank you for your continued and generous support. We remain committed to funding neurodevelopmental research that impacts not only the lives of those with Okur-Chung Neurodevelopmental Syndrome but possibly...

President, Jennifer Sills profiled by Global Genes

October 23, 2020October 23, 2020Jennifer SillsLeave a comment

We are a proud member of the Global Genes Foundation Alliance. Global Genes’ mission is to connect, empower and inspire the rare disease community. As an Alliance Foundation, we have the opportunity to collaborate and exchange best practices with other rare disease organizations to drive better outcomes for the rare disease community. Global Genes...

We are excited to launch our Parent Education Webinar Series

October 9, 2020October 9, 2020Jennifer SillsLeave a comment

We are excited to launch our Parent Education Webinar Series. As parents and patients try to navigate a new diagnosis, they can be overwhelmed with information. We want to provide informational videos to help parents and patients navigate their rare diagnosis and inform them about different types of interventions available. Our first webinar is...