Join other OCNDS families for a monthly Zoom call to talk about all things OCNDS. All languages welcome! We are using a new AI technology to enable participation across languages. When: Oct 23, 2021 08:00 AM Pacific Time (US and Canada) (Check your time zone) Register in advance for this meeting here. After...
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Join other OCNDS families for a monthly Zoom call to talk about all things OCNDS. All languages welcome! We are using a new AI technology to enable participation across languages. When: Sep 25, 2021 08:00 AM Pacific Time (US and Canada) (Check your time zone) Register in advance for this meeting here. After...
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REGISTRATION IS OPEN for our Virtual Run, Walk & Roll on October 16th & 17th. Register here Join our worldwide OCNDS community on OCTOBER 16TH & 17TH for our MOVE INTO ACTION for OCNDS Run, Walk & Roll Fundraiser! This event will help raise awareness and fund research for OCNDS. DO I NEED TO...
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By Elisabeth Mellinger From the day Matilda was born, I had a sense that something was different about her. As she grew, very slowly, I kept asking doctors about my concerns, but they would always push them aside with comments about how cute she was, and how she was just a late bloomer and...
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by Amber Reynolds Mamas, always listen to your heart, your gut, your instinct. Since Harper was a couple months old, I knew something wasn’t quite right. People just said, she’s fine, she’s just a little behind, and to stop reading baby books. At her one year appointment, her pediatrician finally decided to send us...
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Saturday, May 15th at 12pm PST (Check the time conversion for time in your area: https://www.thetimezoneconverter.com/) Kristen Didzoleit, an OCNDS parent & inaugural Parent Advisory Board (PAB) member, is leading an OCNDS Family Zoom Call for early intervention to entering school age children on May 15th at 3pm EST. A few PAB parents with...
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Okur-Chung Neurodevelopmental Syndrome-linked CK2x 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 change...
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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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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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by Erica Lee Trevino “My son, Jordan is 6 years old and has OCNDS. I want to bring awareness to our community about OCNDS. Today, here in the Rio Grande Valley, we held an awareness event at his elementary school. It made me feel so amazed how much support he had from his own...
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