stories – CSNK2A1 Foundation

OCNDS journey in Italy

February 22, 2019December 30, 2019Jennifer SillsLeave a comment

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...

A Piece of a Life’s Journey

February 5, 2019February 5, 2019Jennifer Sills2 Comments

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...

KERI Blog Post Thomas in his favorite room, the Rainbow Room

An OCNDS Parent’s Experience at an Intensive Therapy Program at the Star Institute for Sensory Processing

September 21, 2018September 22, 2018Jennifer Sills1 Comment

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...

Reflections From an OCNDS Parent on Their Family’s Journey to Diagnosis

September 13, 2018September 22, 2018Jennifer Sills1 Comment

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...

President, Jennifer Sills profiled by Global Genes

October 23, 2020October 23, 2020Jennifer SillsLeave a comment

We are a proud member of the Global Genes Foundation Alliance. Global Genes’ mission is to connect, empower and inspire the rare disease community. As an Alliance Foundation, we have the opportunity to collaborate and exchange best practices with other rare disease organizations to drive better outcomes for the rare disease community. Global Genes...

We are excited to launch our Parent Education Webinar Series

October 9, 2020October 9, 2020Jennifer SillsLeave a comment

We are excited to launch our Parent Education Webinar Series. As parents and patients try to navigate a new diagnosis, they can be overwhelmed with information. We want to provide informational videos to help parents and patients navigate their rare diagnosis and inform them about different types of interventions available. Our first webinar is...