Katheryn Elibri-Frame 
The International Foundation for CDKL5 Research 


Sunday June 24, 2012 from 1:00 PM to 6:00 PM CDT

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The Intercontinental Hotel, New Orleans, LA 
444 St Charles Ave
New Orleans, LA 70130

Driving Directions 

IFCR Family Conference 

IFCR Family Conference

New Orleans, LA

June 24, 2012



Conference Schedule


Welcome and Introductions

Katheryn Elibri Frame, DO & President of IFCR


CDKL5: What we know so far/Genetics 101

John Christodoulou, MD, PhD


CDKL5 Research update

David Frame, PharmD


Important therapeutic interventions for children with CDKL5:  Intensive Physical therapy, occupational therapy, assistive technology, augmentative communication, Eye Gaze technology

Mel McGinnis, PT, MPT

Judy Lariviere, M.Ed., OTR/L


Understanding apraxia, and how children with CDKL5 learn

Linda Burkhart, BS


Advocating for your child: Understanding I.D.E.A and learning how to navigate the educational system/ accessing state services

 Kristen Leopoldino

Katheryn Elibri Frame


CDKL5 and epilepsy: Understanding current treatment options

 Speaker to be announced


Fundraising/Media relations: learn how to get involved by spreading awareness and raising funds for CDKL5 research

Kelly Barnes

Kim Nothdurft


Closing Remarks/Tribute video presentation 


  • We ask that everyone planning on attending the CDKL5 Family Conference to please register.  We need an accurate count of attendees.   There is no separate fee to attend the CDKL5 Family Conference, however registration with IRSF for the Rett Family meeting is required (either full conference or one day fee). Go to this link to register:
  • If you would like your child to be included in the tribute video, please forward photos of your children to by June 18, 2012.   We would love to include our entire cdkl5 family.
  • Following the conclusion of the CDKL5 family conference, we are arranging a “New Orleans Experience” dinner out.  We hope you can join us.  Everyone is responsible for the cost of their own dinner.  The restaurant has not yet been determined, but please let us know in advance if you are interested in joining us, so that we can make the appropriate reservations.


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