Join Canadian Parent Advisory Board members, Elisabeth Mellinger and Michelle Proctor-Simms, for a Canadian family zoom meet-up on September 20th at 5pm ET to talk and share stories about raising a child with a rare syndrome in Canada. Topic: OCNDS/CSNK2A1 Canadian Family Meet up Time: Sep 20, 2021 05:00 PM Eastern Time (US and...
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Join Parent Advisory Board member, Rhiannon Cramer, for our monthly OCNDS family Zoom call where families can connect, ask questions and share their stories. This Friday, July 9th, at 4pm Eastern Time (here is a website to convert the time to your time zone: https://www.thetimezoneconverter.com/) Topic: CSNK2A1/OCNDS Monthly Family Zoom Call Time: Jul 9,...
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Q2 | June 2021 IN THE LOOP CSNK2A1 Foundation Quarterly Newsletter _____________________________________________ Together with our partners Simons Searchlight, we are excited for our 2021 Virtual Family & Research Conference. Check out the agenda, register, and join us for the conference. Here’s what you can expect: Presentations for general sessions are based on a daily...
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Receiving an OCNDS diagnosis can be overwhelming and heartrending. Our Parent Advisory Board (PAB) understands how difficult it can be to navigate an OCNDS diagnosis. To help families on this journey, our PAB developed an OCNDS/CSNK2A1 Foundation brochure. This brochure can be shared with your family, friends, teachers, providers, and clinicians to learn more...
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Our friends at Simons Searchlight have announced their 2021 Virtual Family & Research Conference and you’re invited! Here’s what you can expect: ● Presentations for general sessions are based on a daily theme: Science & Medical on July 30 and Services & Therapies on August 6. ● Plenty of time for Q&A throughout the...
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A complex of distal appendage-associated kinases linked to human disease regulates ciliary trafficking and stability Link to Paper: A complex of distal appendage–associated kinases linked to human disease regulates ciliary trafficking and stability | PNAS Authors: Abdelhalim Loukil, Chloe Barrington, and Sarah C. Goetz Research Explained By: Sarah C. Goetz. PhD, Abdelhalim Loukil. PhD...
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Our friends at the Child Neurology Foundation are hosting their inaugural Transitions of Care Patient Advocacy Summit, bringing stories and expert insights covering all stages of the transition process from pediatric to adult care. Join us June 15th-24th for multiple events focused on ensuring that young adults living with a neurologic condition and those...
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June 14, 2021 11:00 AM in Central Time (US and Canada) Our friends at the Child Neurology Foundation are hosting a webinar on June 14th to hear from a parent of child living with a neurologic condition and a child neurologist/sleep specialist about the importance of sleep management for our community. Get insights...
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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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