Registration is open for our Virtual conference. Here are the details. Times are in EASTERN Standard time. Please adjust for your time zone. Please encourage providers, educators, friends and family members to join and learn more. Please register for EACH session AT: General Session 1, August 7: https://bit.ly/3j9iYls General Session 2, August 14: https://bit.ly/3fCqrr1...
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We are pleased to announce our first OCNDS Awareness Day Save the Date for April 5, 2020 for our Take 5 Campaign and learn more about OCNDS and why we chose this day. #ocnds #hopeintoaction #ocndsawareness #csnk2a1 #weareyou...
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We are excited to announce our 2nd family and research conference. In collaboration with Simons Searchlight, we will have a joint family and research conference with 3 other patient organizations that present similarly to ours. When? Thursday, August 6th - Scientific Day for Researchers Friday, August 7th - 9th - Family Conference and Research...
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With your support, all profits raised will go to ongoing CSNK2A1 Foundation sponsored research. Last year’s tournament allowed us to start the CSNK2A1 Foundation Research Program at TGen. Dr. Vinodh Narayanan and his team through their research are determining whether the symptoms of OCNDS are reversible. The CSNK2A1 Foundation and TGen are working together...
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Save the Date: #GivingTuesday is December 3! We’re proud to be a part of this global celebration of giving. We have a generous donor who will match dollar for dollar (up to $50,000) the donations made to CSNK2A1 Foundation for Giving Tuesday. Everyone can have an impact on #GivingTuesday! Join us on December 3...
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Come celebrate with The Sills Family & WHAT? Rare Disease Day is to raise awareness for rare diseases and their impact on the lives of patients and families. WHY? Our sweet Jules was diagnosed with a rare genetic disorder in 2016. 1 in 10 people are diagnosed with a rare disease. We all know...
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Thank you to all of our sponsors for making our 1st Drive for Diagnosis April 22, 2019 Golf Classic a huge success! Thank you for your support and generosity! With your sponsorship we are turning Hope Into Action!...
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FAMILY CONFERENCE Aug 17-19, 2018 Dr. Wendy Chung Dr. Volkan Okur - Presenting Discovery of the Disease Heike Rebholz, PhD - Presenting Casein Kinase (CK2) - Jack of All Trades Emily Glogowski, MS. MCs, LCGC - Genetics 101 - Gene DX Day 1 Day 2 Day 3 ...
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