News and Events

Keeping you up to date!

Check back here often to learn about upcoming events and news related to CDKL5 and rare disorders.    We will highlight CDKL5 in the news, fundraisers, research efforts, and more.

Past News & Events

CDKL5 Forum in Cambridge, MA

November 29-30, 2017

The Loulou Foundation hosted the 3rd annual CDKL5 Forum in Cambridge, MA.

Katheryn Elibri Frame was honored to offer the patient and family perspective to almost 200 researchers, clinicians and organizational leaders.

Rare Disease Day 2018

February 28, 2018

Kiera'sHope Project sponsored and organized a Rare Disease Day event for 600 students and faculty in Dexter, MI, marking the first time such an event has been planned in this school district.  Multiple rare diseases were highlighted, including CDKL5.  The awareness campaign was very well received by students and faculty alike, and plans are underway to broaden the awareness campaign for 2019.  The CRC and Kiera's Hope Project thank the Dexter community schools for their enthusiasm and support!

June is CDKL5 Awareness Month

June 2018

Every June the CDKL5 community comes together to recognize CDKL5 disorder, and promote awareness efforts, research, collaboration  and fundraising.  


June 17 is international CDKL5 Day, in memory of Glyn Boltwood, whose life and legacy was directly responsible for the medical and scientific community discovering CDKL5 Disorder in 2004.

Kiera's Hope Project hosted Michigan Walk forCDKL5 Research

August 4, 2018

The 7th annual Michigan walk for CDKL5 Research was a huge success, raising over $13K for CDKL5 research! Held at beautiful Gallup Park in Ann Arbor, MI It was a free fun-filled family event with food, entertainment and raffle.  All proceeds benefitted the CDKL5 Research Collaborative. 

CDKL5 Research Collaborative

PO Box 26

Dexter, MI 48130

CRC is a 501(c)(3) 


EIN# 82-2453342



©2019 by CDKL5 Research Collaborative.