“Hope cannot be a passive concept. It’s a choice and a force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action.” – Dr. David Fajgenbaum, Chasing My Cure
Every day we work tirelessly behind the scenes to unlock the mysteries of OCNDS, connect families and inspire action. Here is a snap shot of six December days in life of the Foundation.
Miles Traveled: 17,218 miles
Families Met: 10
Modes of transport: plane, train, rented car, cab, tram and London’s tube
Countries visited: France, Netherlands, UK (and Belgium)
Survived: Largest public transportation strike ever in France & torrential rain in the Netherlands
Research institutions visited: 2
New patients diagnosed in US: 2
Stops at Wagamama: 2
Types of Stamppot tried: 3
Tears shed from meaningful moments: too many to count
Fueled by: meeting patients and their amazing families, love, home cooked meals, and lots of coffee
Topics of conversations:
Nothing can keep us from finding answers and connecting families. We are continuously grateful that families open their homes and their hearts to us. We are stronger together! This trip inspired lots of action! One day at a time we are turning hope into action. We are stronger together!
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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