Contact
Katheryn Elibri-Frame
The International Foundation for CDKL5 Research
keframe@cdkl5.com
630-926-1189
Where
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
1:00-6:00pm
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: https://irsf.ejoinme.org/?tabid=191576
- If you would like your child to be included in the tribute video, please forward photos of your children to keframe@cdkl5.com 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.