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