1st family conference Archives - CSNK2A1 Foundation

Day 2 Individually, we are one drop. Together, we are an ocean.

Final Thoughts on Our 1st CSNK2A1 Foundation Family Conference

17 September 2018September 22, 2018Jennifer SillsLeave a comment

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...

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...

2019 Drive for Diagnosis Golf Classic

21 October 2018February 5, 2019Jennifer Sills

To learn more about TGen visit www.tgen.org 2019 Drive for Diagnosis Golf Classic Sponsorship Package...

Final Thoughts on Our 1st CSNK2A1 Foundation Family Conference

17 September 2018September 22, 2018Jennifer SillsLeave a comment

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. ...

Our Journey to Diagnosis and Hope for the Future

28 February 2018July 11, 2018Jennifer Sills1 Comment

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...

Welcome!

21 February 2018July 11, 2018Jennifer SillsLeave a comment

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. Welcome! We found each other. FINALLY! Some of us have waited years for a diagnosis – a name to describe the condition that has affected our children, a name of a...