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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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 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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Join us on Sunday, March 14th at 12:00pm EASTERN to speak to Jennifer Tjernagel, the Simons Searchlight Senior Project Manager, about the CSNK2A1/OCNDS research opportunity. This Q and A will be recorded. Register in advance for this Q and A here. After registering, you will receive a confirmation email containing information about joining the...
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Thank you so much for registering for the Equine Therapy 101 Webinar. Unfortunately, our speaker needs to POSTPONE this webinar because her mother is in the hospital with a broken hip. We will notify you of the new date and time as soon as we know. Thank you! Sorry for any inconvenience! Join us...
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“Baking is done out of love, to share with family and friends, to see them smile.” JOIN US! Let’s make chocolate chip cookies together! CSNK2A1 Foundation is proud to host a Rare Disease Day 2021 Event. Please REGISTER for a FREE online cooking class with The Color-Coded Chef on Sunday, February 28th, 10am Central....
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Please join us and participate in Rare Disease Day 2021. No action is too small. What is Rare Disease Day? Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. This year it is Sunday, February 28th. What is...
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