Rare Disease Day – CSNK2A1 Foundation

Celebrating Rare Disease Day in the Rio Grande Valley, Texas, USA

March 16, 2020March 16, 2020Jennifer SillsLeave a comment

by Erica Lee Trevino “My son, Jordan is 6 years old and has OCNDS. I want to bring awareness to our community about OCNDS. Today, here in the Rio Grande Valley, we held an awareness event at his elementary school. It made me feel so amazed how much support he had from his own...

The Importance of Raising Awareness and Its Effect on Social Opportunity by Jacquie Lopez

March 11, 2020March 11, 2020Jennifer SillsLeave a comment

Amanda (at right) graduating with her proud sister, Madie, by her side. by Jacquie Lopez “3 weeks ago my eldest daughter, Amanda, had a job interview at Inspire Me Bracelets. Her sister Madie just wanted to go with her to the interview. Amanda didn’t want to tell her no and hurt Madie’s feelings. Even...

Offering Timo The Best Future by Myrthe Dolstra

March 7, 2020March 11, 2020Jennifer SillsLeave a comment

By Myrthe Dolstra Our Timo was born on 11/22/2016, I was exactly 37 weeks pregnant. It was a tiny man with long blond hairs. It was a lot smaller and lighter than expected, but we were not worried at the time. We were in love with our little man. After 6 months, it started...

“We Had No Idea” by Amber Reynolds

March 6, 2020March 6, 2020Jennifer Sills1 Comment

We Had No Idea Rare Disease Day Reflection from a Rare Warrior Mama, Amber Reynolds: When Harper was born we had no idea about genetic diseases, developmental disabilities, and that sometimes “healthy” babies have underlying problems that show up well after birth. We had no idea that 9 months later our lives would be...

I Challenge You

March 4, 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

March 3, 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

February 28, 2019December 5, 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

February 25, 2019December 5, 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

November 8, 2018December 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

July 11, 2018September 22, 2018Jennifer Sills5 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...