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...
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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...
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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...
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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:...
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Registration is open for our Virtual conference. Here are the details. Times are in EASTERN Standard time. Please adjust for your time zone. Please encourage providers, educators, friends and family members to join and learn more. Please register for EACH session AT: General Session 1, August 7: https://bit.ly/3j9iYls General Session 2, August 14: https://bit.ly/3fCqrr1...
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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....
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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...
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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...
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Written by an OCNDS parent My husband and I are parents to two (2) amazing children. Our daughter was diagnosed with OCNDS at the end of October 2019. We have been searching for a diagnosis for her symptoms for 13 1/2 years. Throughout the years, we took advantage of whatever the latest genetic testing...
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