The Voice of CSNK2A1 Foundation
Today is International OCNDS Awareness Day. On April 5, 2016, lives were changed forever. On this day, 5 years ago, the first paper was published describing a brand-new syndrome called Okur-Chung Neurodevelopmental Syndrome, also known as OCNDS. Initially, there were 5 children identified in the paper with OCNDS. Soon these 5 children would be...
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Join us on social media April 5th for International OCNDS Awareness Day. Why did we choose April 5th for our annual awareness day? On April 5, 2016, 5 years ago, the first paper was published describing a brand new syndrome called Okur-Chung Neurodevelopmental Syndrome, also known as OCNDS. Initially, there were 5 children identified in...
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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...
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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...
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SHARING IS CARING! There are so many ways to share the love of giving to help us find a cure and make a meaningful change in the lives of individuals affected by OCNDS. Did you know that you can donate your birthday by creating a Facebook fundraiser? It is as easy as one click...
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Last week our President, Jennifer Sills, shared her daughter Jules’ story at the California Rare Disease Caucus at which assembly members were present. Thank you to CAL RARE and Angela Ramirez Holmes for giving her the opportunity to share how COVID is affecting those with rare disease. The hearing video is on their website:...
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Founder and President, Jennifer Sills, talks with Tammie Bennett from the Show Up Society Podcast about her family’s journey with OCNDS and starting CSNK2A1 Foundation. We thank Tammie Bennett for “showing up” for our OCNDS community and bringing awareness to this ultra rare genetic syndrome....
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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...
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We are thrilled to announce we are working on new initiatives for the OCNDS community. We are forming our inaugural Parent Advisory Board. We are looking for caregivers or parents who want to get more involved. This is an exciting opportunity for parents or caregivers of an OCNDS patient to make a difference in...
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