Understanding
Okur-Chung Neurodevelopmental Syndrome
2nd Family and Research Conference
We are excited to announce our 2nd family and research conference.
In collaboration with Simons Searchlight , we will have a joint family and research conference with 3 other patient organizations that present similarly to ours.
When?
- Thursday, August 6th - Scientific Day for Researchers
- Friday, August 7th - 9th - Family Conference and Research Projects
Where? Hyatt Regency Baltimore Inner Harbor 300 Light Street Baltimore, MD 21202
Cost? Attending families will be responsible for their travel and hotel costs (which will be negotiated at a reasonable rate by Simons Searchlight). However, we are currently speaking with a donor who may sponsor the hotel room costs for our families . Please stay tuned. Families will be expected to register for the conference by the designated date (Date to be determined shortly). Registration is not open yet. Good news, there will be NO registration fee for families.
Why? The Simons Searchlight program is built on the belief that changes in the genes associated with autism and neurodevelopmental disorders cause both unique clinical features within each group but also many similar challenges. We are hopeful that scientific breakthroughs in one rare genetic condition can accelerate progress for other disorders. Bringing together multiple gene groups for this meeting will offer families the opportunity to connect with others sharing their same genetic finding, and also the chance to learn from other groups and participate in research projects looking across conditions. CSNK2A1 Foundation believes that collaboration across similar conditions and groups will accelerate research that will benefit us all.
We are excited to see you all!
If you have any questions, please contact us .