Katheryn Elibri Frame, DO 
The International Foundation for CDKL5 Research 


Tuesday June 24, 2014 from 8:00 AM to 4:30 PM EDT

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Westfields Marriott Washington Dulles 
14750 Conference Center Dr.
Chantilly, VA 20151

Driving Directions 

CDKL5 Research Symposium 



2nd International CDKL5 Research Symposium

Westfield Marriott Washington Dulles

The Lincoln Forum

June 24, 2014

 8:00am - 5:00pm


*Peliminary AGENDA


8:00 – 9:00 am 


Breakfast in the Fairfax Dining Room 

9:00 – 9:15 am 


David Frame, PharmD and Katheryn Elibri, DO

 International Foundation for CDKL5 Research, USA

9:15 – 10:00 am 

Current Understanding of CDKL5

10:00 – 10:45 am 

Updates from the International CDKL5 Database:

Improving our Understanding of the CDKL5 Phenotype

 Dr. Helen Leonard and Jenny Downs, PhD  

Telethon Kids Institute, Australia

10:45 – 11:15 am 

Control of CDKL5 levels in depolarized neurons

Charlotte Kilstrup-Nielsen, PhD

University of Insubria, Italy

11:15 - 11:30 am 

Break - coffee, tea, refreshments in the Rotunda

11:30 - 12:30 pm  

CDKL5 Mouse Models: characterization and molecular pathways

Judy Wang, PhD, University of Pennsylvania, USA

Maurizio Giustetto, PhD, University of Torino, Italy

12:30 - 1:30 pm

Lunch in the Fairfax Dining Room

1:30 - 2:15 pm

Modeling CDKL5 Disorder with iPS cells

Priscilla Negraes, PhD

University of California San Diego, USA 

2:15 - 2:45 pm 

GluD1 is a common altered player in neuronal differentiation from both MECP2-mutated and CDKL5-mutated iPS cells

Alessandra Renieri, MD 

University of Siena, Italy 

2:45 - 3:30 pm

The Epigenetics of CDKL5

3:30 - 3:45 pm

Break - coffee, tea, refreshments in the Rotunda 

3:45 - 4:00 pm

CDKL5 Clinical research and opportunities for collaboration among other rare epilepsies and disorders

Katheryn Elibri Frame, DO, IFCR

 4:00 - 4:45 pm

CDKL5 Centers of Excellence: The multidisciplinary approach to CDKL5 care, and exploring opportunities for translational research 

Walter Kaufmann, MD, Boston Children's Hospital

Tim Benke, MD, PhD, Children's Hospital Colorado

4:45 - 5:00 pm

CDKL5  Research:  Where do we go from here?

Closing Remarks

David Frame, PharmD