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Our Research Vision

Here at CDKL5 Research Collaborative, we are driven by a single goal: to change lives now for families living with CDKL5 Disorder. We are focusing on key clinical areas that are currently not being funded, or are very underrepresented in existing research agendas.  We have a clear vision and plan for taking CDKL5 clinical care and innovation to the next level. We are not content with the status quo, and we understand  the layers upon layers of work that needs to be done to achieve our goals.  We know the work will be hard, and we are prepared for the challenge.  We have the experience, insight, knowledge, and passion to lead this effort on a global scale on behalf of our CDKL5 community.  


Our Main areas of focus are:

  • Funding innovative and cutting edge clinical research across the clinical spectrum, including center-based, community and educational settings.

  • We are focusing heavily on neuro plasticity and neuro-abilitation, working with key leaders in the field to develop therapeutic guidelines and interventions.

  • Advocacy for our CDKL5 children and families, in the community, medical, pharmaceutical, policy-making and drug development spaces.

  • Collaboration across all fields and stakeholders.  Research and clinical care do not exist in isolation.  There are numerous individuals, organizations, companies, academic centers, investors, pharmaceutical companies, government agencies, and other disorders that must all work together to achieve the best possible outcomes for our CDKL5 community.  

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