Our Story

Working Towards a Better Tomorrow

Our daughter was diagnosed with CDKL5 disorder in 2008, and where nothing existed to study CDKL5 or potential treatments, we jumped in and created a "Roadmap to a Cure", and co-founded the International Foundation for CDKL5 Research. After serving as President and science director of IFCR until August 2017,  we have now turned our attention to an under-represented area in CDKL5 research: Clinical Care and Advocacy.

 

The CDKL5 Research Collaborative emerged out of a pursuit to inspire a different approach to clinical care, and to support and advocate for our CDKL5 community.  We know actions speak louder than words. In our team, you will find an organization driven by progressive ideas, bold actions, and a strong foundation of collaboration and support.

 

Contact us to learn more and get involved.

Our Team

Committed to changing lives.

Katheryn Elibri Frame, DO

President and Founder

Katheryn is a physician and patient advocate, and mom to Kiera, an inspiring and courageous child living with CDKL5 disorder.  She has dedicated her life to making her daughter's better and brighter.  Katheryn draws on her extensive clinical experience to navigate the medical landscape of clinical research, and recognizing possibilities where others might only see barriers.   With eleven years of non-profit leadership and development experience, Katheryn knows that hard work, courage, leadership, collaboration and vision are the pathway to innovation and success.

David Frame, PharmD

Chief Science Advisor

David is a brilliant and dedicated clinician and researcher, whose experience and knowledge has helped advance CDKL5 science to where it is today.  David is an invited speaker at conferences and meetings around the world, and has been a key voice for aggressive, smart and focused CDKL5 research. As father to his precious Kiera, he works tirelessly to seek, educate, advise and encourage the best scientists and clinicians around the world to help our CDKL5 community.  His passion and devotion are only limited by the number of hours in a day!

Michael Aubrey

Director

Michael is a Managing Partner at Two Roads Equity and an entrepreneur with heart.   Bringing years of healthcare business experience to the board, he is uniquely positioned to help our organization build a solid operational base and collaboration with biotech and other entrepreneurial stakeholders.
Michael graduated summa cum laude from the University of Notre Dame with a Bachelor of Business Administration degree.

CDKL5 Research Collaborative

PO Box 26

Dexter, MI 48130

CRC is a 501(c)(3) 

non-profit

EIN# 82-2453342

 

 

©2019 by CDKL5 Research Collaborative.