Rare Disease Day 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...

Rare Disease Day Awareness Project

28 February 2019February 28, 2019Jennifer SillsLeave a comment

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...

Art Brings Community Together for Rare Disease Day

25 February 2019February 26, 2019Jennifer SillsLeave a comment

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...

Save the Date for Rare Disease Day February 28, 2019

8 November 2018February 5, 2019Jennifer SillsLeave a comment

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...

My Reflection of Rare Disease Day 2018

11 July 2018September 22, 2018Jennifer Sills4 Comments

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...

2/28/18 is Rare Disease Day

28 February 2018September 17, 2018Jennifer SillsLeave a comment

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. ...