Title: Okur-Chung Neurodevelopmental Syndrome-linked CK2 variants have reduced kinase activity Link to Paper: https://rdcu.be/cjYNS Authors: Dominguez I, Cruz-Gamero JM, Corasolla V, Dacher N, Rangasamy S, Urbani A, Narayanan V, and Rebholz H Research Explained By: Dr. Heike Rebholz Research Explained Summary: All patients diagnosed with OCNDS share one thing in common: they have one...
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By Victoria Howard My sister was born on June 1st 2011 and was showing no signs of any delay up until 6 months of age when she had her first seizure. She got diagnosed with epilepsy before the age of 1 and then found out she had microcephaly. She can eat normal and claps...
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SAVE THE DATES JULY 30, AUGUST 6 & 7, 2021 We are excited about our partnership with Simons Searchlight for our annual family conference. The official registration with more information will be coming soon! General Session Dates: Friday, July 30 and Friday, August 6 1:00 p.m. to 4:00 p.m. E.T. CSNK2A1 Presentation Date: Saturday,...
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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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“Most parents thankfully don’t know what it is like staying up all night to make sure your child is still breathing while monitoring their heart rate. Or even having to make that choice to even give rescue medications to stop a medical event. The ever-present parental terror that exists on a daily basis.” By...
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Quarterly Scientific Roundtable: Path Towards Treatment MEETING GOALS & GUIDELINES CSNK2A1 Foundation hosts a quarterly Scientific Roundtable to bring together researchers, clinicians and innovators to exchange ideas and accelerate the path towards treatment for OCNDS. For information or inquiries about our Quarterly Scientific Roundtable, please email at research@csnk2a1foundation.org. THANK YOU TO OUR RESEARCHERS WHO ARE ALREADY...
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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 the paper with OCNDS. Families searching for years finally had an answer,...
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Most, if not all, doctors have never heard of OCNDS and have no idea how to provide care for those living with OCNDS. We can change this! OCNDS families can make a difference today by signing up for the CSNK2A1 Simons Searchlight Natural History Study! Are you interested in participating and would like to...
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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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Join us on Thursday, April 1st at 4pm Central for our Parent Education Webinar Series featuring AAC Specialists from Speak for Yourself, LLC to learn more about Alternative Communication 101! This will be recorded. Register in advance for this webinar here. After registering, you will receive a confirmation email containing information about joining the...
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