2018 YEAR IN REVIEW One year ago on Rare Disease Day, we launched the official website for CSNK2A1 Foundation (the "Foundation"). The Foundation just celebrated its frst year! We made tremendous progress in our inaugural year. Here are a few things this young organization accomplished in its opening year! We started to fund a...
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by Melissa Burnham Today is Rare disease day!!! After almost 7 years, Belle was finally diagnosed with a rare, newly founded, genetic disease called OKUR-CHUNG Neurodevelopmental syndrome ( Named after the two Scientists who discovered it.) We are so grateful for answers, and the sweet community we have gained. I thought I’d give a...
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by Amber Reynolds As today is Rare Disease day, I wanted to share my sweet Harper’s story again. To honor this day I want to highlight her very rare syndrome, Okur-Chung Neurodevelopmental Syndrome. Many of you are aware of our journey and trying to find a diagnosis for Harper. We knew within Harper’s first...
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For Direct Link to YouTube Video, click here Led by the talented and inspirational artist, Tere Casas, adults and children painted what makes them happy and what community means to them. Tere Casas created a short but powerful video of the extraordinary process. Thank you, Tere, for using art to bring us together! CSNK2A1...
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Tere Casas is a celebrated and well known artist from Mexico whose work has been showcased around the world. She is an exceptional artist with a huge heart. For Rare Disease Day, she donated her time to show how art can bring a community together. Kids from our Bay Area community transformed a blank...
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Samuel’s mother has shared their journey in Italy. The English translation is below. The original Italian version follows. We are grateful to our community who submitted stories leading up to Rare Disease Day. To date, one family has been diagnosed with Okur-Chung Neurodevelopmental Syndrome in Italy. Please read this raw, emotional and honest piece...
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Arthur’s mother has shared her story from France. Below is an English translation. The original French version follows. Since the day Arthur was born I felt he was in pain and that something was wrong. We already had a two-year-old daughter when he was born. My baby was in pain. He cried a lot...
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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...
Continue readingThank you to all of our sponsors for making our 1st Drive for Diagnosis 2019 Golf Classic a huge success! Thank you for your support and generosity! With your sponsorship we are turning Hope Into Action! We look forward to seeing you all on Monday, April 22, 2019 at El Caballero Country Club for...
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By Keri Ninness As we began to really prepare for Thomas to go to Public school for kindergarten, we asked his therapists where they saw his biggest areas of need. We then assessed where in our home his functioning was most impaired. While Thomas doesn’t have a full on Sensory Processing Disorder diagnosis, he...
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