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
and highlights from the CDKL5 community

Rare Disease Day 2019

February 28, 2019

Kiera's Hope Project sponsored and organized a Rare Disease Day event for over 600 students and faculty in Dexter, MI, and over 500 students in Ann Arbor, marking it's 2nd year hosting this awareness event.   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 2020.  The CRC and Kiera's Hope Project thank the Dexter and Ann Arbor community schools for their enthusiasm and support!

June is CDKL5 Awareness Month

June 2019

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.

5th International CDKL5  Family and Research Conference

June 2019

Hosted in Edinburgh, Scotland by CDKL5 UK and the CDKL5 Alliance, the international CDKL5 community came together share ideas, learn about the latest research, and bond with each other as we share this uncommon journey.  

 

Families and researchers from around the world joined in solidarity to advocate for and promote CDKL5 deficiency disorder.

This annual family conference alternates between Europe and North America, and the 2020 meeting is scheduled for Houston, TX over the summer.  Details pending.

Kiera's Hope Project hosted Michigan Walk for CDKL5 Research

August 11, 2019

The 8th 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 Forum in Cambridge, MA

November 3-5, 2019

The Loulou Foundation hosted the 5th annual CDKL5 Forum in Cambridge, MA.

CDKL5 Research Collaborative

PO Box 26

Dexter, MI 48130

CRC is a 501(c)(3) 

non-profit

EIN# 82-2453342

 

 

©2020 by CDKL5 Research Collaborative.