3rd International CDKL5 Family Conference & Science Symposium

3rd International Family Education and Awareness Conference at Eaglewood Resort and Spa in suburban Chicago, IL from June 24-26, 2016.

3rd International Family Education and Awareness Conference 


CONFERENCE PROGRAM | Subject to Change

ONLINE REGISTRATION IS CLOSED | Purchase tickets for all three days or single day at the event


Holiday Inn Itasca, (630) 773-2340

Hampton Inn (630) 495-9511

Hilton Garden Inn Addison (630) 691-0500 


The IFCR is excited to host the 3rd International CDKL5 Family Conference at Eaglewood Resort and Spa in suburban Chicago, IL from June 24-26, 2016. Visit our Symposium page for more more information and registration.


Harnessing the power of collaboration and community, IFCR is proud to partner with our related disorders represented by Rettsyndrome.org (IRSF); MECP2 Duplication and the International Foundation for FOXG1 (IFF) in some joint sessions of common relevance, meals, receptions, and respite.


To book rooms at the amazing $139 per family conference hotel room rate negotiated, phone the Eaglewood Reservation line 1-877-285-6150, reference “Family Conference”, as this rate includes ALL resort fees and meeting amenities, rate cutoff is May 27th. Please be aware that you may find rates less than our $139/night, calling directly or through broker sites, however they do NOT include the resort fees so will not be less than the negotiated rate. Please be sure you are booked in the “Family Conference” block to avoid these extra fees.


Program Highlights:

  • Expert Sessions on Research, Clinical Trials, Genetics, Medical/Symptom Management, Therapies, Communication, Literacy, School, Adulthood, Quality of Life, Fundraising, and Advocacy
  • Natural History Study session with the Researcher Symposium open to family attendees on Friday
  • Abilities Expo excursions Friday and Sunday afternoons (Expo event flyer here)
  • Small Group Meet and Greets
  • Expand Horizons with our Related Disorders
  • Build Lasting Relationships with the International Foundation for CDKL5 Reserach, Expert Presenters, and Attendees
  • Celebrations at the Saturday Night Tribute Reception
Helping Hands Keepsake Journal – the closest we come to a CDKL5 Yearbook – place your message of Hope; advertise a business; make a Tribute to your child or grandchild for all to treasure. Electronic version will be posted to our website after conference for everyone to enjoy! You can submit your advertisement or message of support now to sparks@CDKL5.com!


Why Attend? The IFCR is working with other organizations to carefully and thoughtfully coordinate conference details just for you: families, caregivers, educators and allied health professionals. It is the only one of this caliber where parents and professionals of those with CDKL5 and Related Disorders come together from all over the world, under one roof, to learn the most current recommended care and advocacy strategies for every stage of life, and hear first-hand the latest in research and the prospect for future clinical trials. Even though many resources today can be accessed online, nothing replaces the experience of meeting face-to-face with experts; hands-on interactions with carefully orchestrated workshops; and spending time developing lasting relationships with other parents, attendees and all of us at the International Foundation for CDKL5 Research (IFCR).
  • Limited Respite – 4 hour block minimums (2 blocks on Saturday, 1 block on Sunday), rate TBD
  • Guests/travel companions may dine with us at their own expense in the onsite Burnham Restaurant (your meals are included with your registration)
  • Guest Tribute Dessert Reception tickets $50 (diagnosed children attend at no charge as our guest)
  • Diagnosed children are our guests at meals, the Friday evening Welcome Orientation, and the Saturday Tribute Reception
Please, no children allowed in sessions to maintain fast pace, allow frank discussion, and permit quality audio recordings


Travel and local information:
Eaglewood area attractions: Off-property attractions
Eaglewood restaraunt guide: On and Off-property


Proud Partners:



From the 2014 conference:

Helping Hands Keepsake Journal

D.C. Conference Program