by Erica Trevino
Today is an amazing day to spread Awareness for Rare Disease Day!!
It has been a long journey for Jordan. It took 5 years to finally find a diagnosis. We had lost hope in find answers until his genetic doctor told us two amazing doctors - Dr. Okur and Dr. Chung - had answers. We were so happy and blessed to finally have answers for our son, Jordan.
We didn't know what OCNDS was. We looked online for answers and found nothing but a Facebook group. We decided to join the Facebook support group...and they have been nothing but a fully supportive, amazing community that understands us every step of the way!!
After many obstacles, Jordan always has a smile on his face!! When we started this journey, we had no idea how hard it was going to be to help him, understand him, and what the future held; we just took it one step of a time...And now Jordan is doing amazing. Jordan is 8 now. We have learned so much from him, in understanding him. Jordan has been a wonderful blessing. We couldn't be happier Parents! Jordan loves to dance. He loves music and having fun with family!! He adores his siblings!!
We are focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives. CSNK2A1 Foundation is operated and funded through a committed team of volunteers, advocates and researchers.
We are a 501(c)(3) non-profit organization. EIN #82-4220939.
© 2023 CSNK2A1 Foundation
1929 Van Ness Avenue
San Francisco, CA 94109
(415) 483-2488
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