Hope rises when people rise!TM
29 February 2024
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.
Family Advisory Committee
We believe that working together is the only way to achieve our goals. Unique perspectives and experiences all add to the collective understanding of CDKL5 deficiency disorder. By understanding the spectrum of the disorder, and the priorities of those living with this rare disease, we can start to tackle the day to day issues that children and families face.
The CDKL5 Research Collaborative is looking for families to join our family advisory board, to share their concerns and ideas with us. The needs of the CDKL5 community are at the very heart of what we are doing.
For more information on how to be a family collaborator, please reach out to us.
"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world".
How you can change a life!
Everyone can make a difference today!
We are a young non-profit with an extraordinary agenda. We are grateful to all our supporters, and invite you to join this revolution. Children with CDKL5 deficiency have a very rare disorder and struggle to have a voice. We need YOU to be their voice. Here are a few key ways you can help.
Donate to our cause
Make an investment in Hope
We know you work hard for your money, so we are committed to responsible and transparent use of donations dollars. Our organization is all volunteer, with minimal overhead, so our programs can be funded with the maximum donations possible.
Thank you for considering our organization for your charitable giving. Your commitment and trust in us will be met with hard work, projects that make a difference, and transparent accountability. You can donate directly, and also by participating in philanthropic websites that give back to our charity.
Making a difference
Holding a fundraising event can be very rewarding! There is no such thing as "too small", because we make every single dollar count! Think about your passions and hobbies, and with some creative thinking, you can turn them into events that are lots of fun, and include your friends, family and community. CRC is here to support you in whatever way we can, including helping with ideas and development.
Find Joy in the Journey
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has!"
If you are one of those people who believe in our mission and vision, and see possibilities where others cannot, then we open our arms to you and your service. Please reach out to us today.
Opportunities exist in many areas, including hands-on help with operational needs, in-person volunteer work at fundraisers, community outreach, marketing, and much more. If you have a talent or passion you'd like to share with us, we will put you to work, with our deepest gratitude!
There are many areas of CDKL5 research that are in need of participants. There is an international database, an NIH sponsored natural history study, CDKL5 Centers of Excellence, and clinical trials recruiting for eligible patients. As more research opportunities become available, you can find a complete list here.