Hope rises when people rise!TM
We understand the urgency in developing treatments and standards of care to improve the lives as quickly as possible for those living with CDKL5 disorder. Our single focus is improving the lives of our children now. Our goal is to engage all stakeholders so that, together, we can rapidly accelerate and coordinate the pace of clinical science for CDKL5. It is vital that patients and families have access to CDKL5 experts, treatment and prevention strategies, clinical guidelines /standards of care, clinical trials and educational and community support. While bench and translational science is equally and vitally important to understanding CDKL5 disorder, it is often slow by nature. Our children and families have been waiting for years, they need help and hope today! We believe the unexpected is possible when diverse, educated and experienced leaders focus on specific problems. We believe there are untapped resources and areas of clinical focus that can make a tangible difference in the everyday life of those living with this devastating condition.
Founded in 2017, and leveraging our experience and knowledge as physicians and scientists, we are spearheaded by families directly impacted by the daily struggles of CDKL5 disorder and we are uniquely positioned to push for aggressive clinical care and development. We understand precisely what it's like to be on both sides of the doctor-patient relationship. We understand the patient/family struggles intimately, but also what medical care and science is capable of and how we can partner together for the most comprehensive, evidence-based approach to the care and cure for our children. Hope is at the core of what we do, but we also understand that hope, without a plan, is just a wish. We have a collaborative and careful plan that will change lives now. This is our passion, and hope is taking flight!
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 epilepsy, 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.