Stories Archives - CSNK2A1 Foundation

I Challenge You

4 March 2019March 4, 2019Jennifer SillsLeave a comment

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...

Reflections on Rare Disease Day

3 March 2019March 4, 2019Jennifer SillsLeave a comment

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...

OCNDS journey in Italy

22 February 2019February 22, 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

5 February 2019February 5, 2019Jennifer SillsLeave a comment

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

21 September 2018September 22, 2018Jennifer SillsLeave a 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

13 September 2018September 22, 2018Jennifer SillsLeave a 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...

Spotlight on Cooking Independently!

23 August 2018September 14, 2018Jennifer SillsLeave a comment

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...

Spotlight on Rhiannon Cramer

28 February 2018September 14, 2018Jennifer SillsLeave a comment

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...