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...
Continue readingWe are excited to launch our Parent Education Webinar Series
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...
Continue readingShare the Joy of Giving!
SHARING IS CARING! There are so many ways to share the love of giving to help us find a cure and make a meaningful change in the lives of individuals affected by OCNDS. Did you know that you can donate your birthday by creating a Facebook fundraiser? It is as easy as one click...
Continue reading2019 Year In Review
Our President Speaks at the California Rare Disease Caucus
Last week our President, Jennifer Sills, shared her daughter Jules’ story at the California Rare Disease Caucus at which assembly members were present. Thank you to CAL RARE and Angela Ramirez Holmes for giving her the opportunity to share how COVID is affecting those with rare disease. The hearing video is on their website:...
Continue readingBuilding an Army to Find a Cure on The Show Up Society Podcast
Founder and President, Jennifer Sills, talks with Tammie Bennett from the Show Up Society Podcast about her family’s journey with OCNDS and starting CSNK2A1 Foundation. We thank Tammie Bennett for “showing up” for our OCNDS community and bringing awareness to this ultra rare genetic syndrome....
Continue readingApril 2020 Research Update
Dear Donors, Supporters, and Friends, Today would have been our 2nd annual Drive for Diagnosis Golf Classic at El Caballero Country Club. We want to thank you for your continued and generous support. We remain committed to funding neurodevelopmental research that impacts not only the lives of those with Okur-Chung Neurodevelopmental Syndrome but possibly...
Continue readingANNOUNCING OUR INAUGURAL PARENT ADVISORY BOARD
We are thrilled to announce we are working on new initiatives for the OCNDS community. We are forming our inaugural Parent Advisory Board. We are looking for caregivers or parents who want to get more involved. This is an exciting opportunity for parents or caregivers of an OCNDS patient to make a difference in...
Continue reading2020 Awareness Day
Announcing our First OCNDS Awareness Day
We are pleased to announce our first OCNDS Awareness Day Save the Date for April 5, 2020 for our Take 5 Campaign and learn more about OCNDS and why we chose this day. #ocnds #hopeintoaction #ocndsawareness #csnk2a1 #weareyou...
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