Jennifer Sills – CSNK2A1 Foundation

I Ruff Someone Rare

February 26, 2021February 25, 2021Jennifer SillsLeave a comment

By Melanie Kretas / artwork by Ava Rare Disease Day Reflection I 💙RUFF💚someone rare! Rare comes in all different shapes and sizes, same with best friends! Ava loves the company of her two best friends, Hero and Ranger🐾She enjoys walking them, playing with them and feeding them. They make her laugh every single day!...

Notre petit soleil

February 25, 2021February 25, 2021Jennifer SillsLeave a comment

by Aurélie Aujourd’hui est une journée de sensibilisation aux maladies génétiques rares.. Nous ne nous étions jusque là jamais réellement intéressés au sujet.. Nous ne savions pas à l’arrivée d Helio que nous vivrions un véritable combat avec et pour lui.. Un combat quotidien qui a démarré dès ses 9 mois avec des heures,...

Love Needs No Words

February 19, 2021February 16, 2021Jennifer SillsLeave a comment

By Amber Reynolds As we started to learn more and more about Harper’s diagnosis, Okur-Chung Neurodevelopmental Syndrome, we started to understand that our precious nonverbal daughter, Harper, might never learn to speak. One of my saddest moments as a mom was thinking I may never hear my daughter tell me she loves me. Harper...

Reflection of OCNDS parent on Rare Disease Day 2021

February 16, 2021February 16, 2021Jennifer SillsLeave a comment

By: Claire Whitehill “The future is a mystery, but as long as she is happy and healthy that is good enough.” Early days Kirsty was born 7 weeks early due to Strep B and spent the first 3 weeks in the Special Care Baby Unit with an NG tube. She went back into hospital...

Rare Disease Day Event - The Color Coded Chef

Rare Disease Day 2021 Cooking Class with The Color-Coded Chef

February 2, 2021February 5, 2021Jennifer SillsLeave a comment

“Baking is done out of love, to share with family and friends, to see them smile.” JOIN US! Let’s make chocolate chip cookies together! CSNK2A1 Foundation is proud to host a Rare Disease Day 2021 Event. Please REGISTER for a FREE online cooking class with The Color-Coded Chef on Sunday, February 28th, 10am Central....

Rare Disease Day 2021 Save the Date

January 27, 2021January 29, 2021Jennifer SillsLeave a comment

Please join us and participate in Rare Disease Day 2021. No action is too small. What is Rare Disease Day? Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. This year it is Sunday, February 28th. What is...

Today, December 1st, is Giving Tuesday!

December 1, 2020December 1, 2020Jennifer SillsLeave a comment

Today, December 1st is Giving Tuesday, a global day of giving. “Your spark can become a flame and change everything.” E.D. Nixon Be The Spark for those living with OCNDS. Give a Gift of Hope today. There are limitless ways to give. Today, give the gift of hope by SHARING this video on Facebook,...

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...