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 reading
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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...Continue reading
We walked into the 1st CSNK2A1 Foundation Family Conference as strangers and we finished the weekend as lifelong friends. We now have friends (more like new family) that we can call on at anytime who will understand our excitement when our child hits a milestone, or will understand when its been a tough day...Continue reading
By Rhiannon Cramer I wanted to take a moment to say how thankful I am for the OCNDS community and to tell a little of our story and journey. Our daughter’s problems were evident by the second week of her life. This turned our lives into a journey that has been a long difficult...Continue reading
Today we are featuring an OCNDS Parent, Terri Jordan, who created an amazing product to enable her son and individuals like him with unique needs to cook independently and be more self sufficient. This is one of our goals at CSNK2A1 Foundation to help those affected with OCNDS live their happiest, most independent lives...Continue reading
EVERY DAY I HOPE YOU FEEL LOVED, SEEN, ACCEPTED AND PART OF A COMMUNITY. This was the first time our family, together with our community, celebrated Rare Disease Day. We celebrated in honor of our daughter, Juliet, who has Okur-Chung Neurodevelopmental Syndrome (“OCNDS”), an ultra rare genetic disorder. This celebration documented our huge shift...Continue reading
2/28 is Rare Disease Day We are officially Friends of Rare Disease Day. We are having our first event to celebrate Rare Disease Day and bring awareness to OCNDS in California. ...
Rhiannon Cramer is the head liaison for the closed OCNDS Facebook group. She created the Facebook group in 2016 to help families connect after her daughter, Cordelia, was diagnosed with OCNDS. Cordelia was the one of original five children identified in the first published research paper describing OCNDS. We are grateful to Rhiannon for...Continue reading
Learning and Advocacy for Our Children For parents of children with rare diseases, we are in a constant state of learning. We experience the joy of learning about this amazing new baby in our lives. We learn our child has differences from other children. We learn about those differences through a clinical diagnosis that...Continue reading