FAMILY CONFERENCE
Aug 17-19, 2018
Jessica & Autumn Ready for Participants to Register
Ready to Welcome Participants to our first conference
Ready to Welcome our Families
Jason & Jasper discussing what they will write for our Ice Breaker
Davis Sills Family with researcher Heike Rebholz
Pedro and His Mom
Families getting to know each other
Sharing Our Journey to Diagnosis
New friendships were formed
Dr. Okur & Keri meeting in person for the 1st time
Lowman Family with Dr. Volkan Okur
Treehouse Tribe and Behavioral Therapists prepared for fun in the Youth Room
Simons VIP ready to take blood samples & inform our community about our natural history study
“when you encounter a zebra, think GeneDx, where rare is common”
Emily Glogowski, Genomics Counselor, GeneDx
Youth Room with Coleen from Tempo Music & Music Together. Thank you for donating your time to our kids
Day 2 conference
Day 2 conference
Dr Volkan Okur presenting Discovery of Disease
Happy times in the Youth Meeting Room
Reseacher Heike Rebholz presenting Casein Kinase 2 (CK2) - Jack of All Trades
Jules waiting to do the limbo
Day 2 conference
Youth Room fun
Dr Wendy Chung presenting the research revealed from the Simons VIP study
Individually, we are one drop. Together, we are an ocean.
Ava & Harper formed a deep friendship
Sills Family with Dr Chung & Dr Okur
The Alves Family traveled for the first time on a plane from Brazil to join families at our first conference
Grandparents also joined our conference to learn more about OCNDS
Day 2 conference
Day 2 conference
Day 2 conference
Making plans to keep in touch
Family activity
Day 3
Day 3
Day 3
Day 3
Day 3
Aldo and Adriel from Brazil
Enzo of the Lizard Guys putting on an engaging and hilarious show for our families
Enzo, The Lizard Guy, showing how to pet a lizard
Meeting new reptiles
Nothing like a huge snake to get a huge smile from Jules
Landon is brave holding a hissing roach
Liam loving the show
It was amazing for the kids to meet each other
Last day lots of laughs, tears and hugs
Rhiannon & her daughter hopeful for the future
The Kretas Family at our closing ceremony
Treehouse Tribe writing their hopes and wishes for our community
Writing our hopes and wishes for the future
The hopes and dreams of our community
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
The information provided is not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on this website. Read more...
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