(415) 483-2488info@csnk2a1foundation.org

1st CSNK2A1 Foundation Family Conference

September 5, 2018December 5, 2019Jennifer SillsLeave a comment

Conference flyer

FAMILY CONFERENCE

Aug 17-19, 2018

Dr. Wendy Chung

Dr. Volkan Okur - Presenting Discovery of the Disease

Heike Rebholz, PhD - Presenting Casein Kinase (CK2) - Jack of All Trades

Emily Glogowski, MS. MCs, LCGC - Genetics 101 - Gene DX

Day 1

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

Day 2

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.
New friendships were formed
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

Day 3

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

Leave a Reply Cancel reply

President, Jennifer Sills profiled by Global Genes

October 23, 2020October 23, 2020Jennifer SillsLeave a comment

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 reading

We are excited to launch our Parent Education Webinar Series

October 9, 2020October 9, 2020Jennifer SillsLeave a comment

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 reading