Our Starfish Story
The IFCR has adopted the starfish as the symbol of our organization because it reminds us to keep going and never give up. It was inspired by The Starfish Thrower.
The Starfish StoryOur mission is to treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive.
The IFCR is committed to funding scientific and clinical research that will bring about treatments and, ultimately, a cure for CDKL5. We strive to raise awareness of this rare disorder within the medical and lay communities.
Above all, we seek to support all CDKL5 families and caregivers, whether newly diagnosed or well into adulthood, by providing the most current information on treatment advances and how to live their best life possible.
The IFCR has adopted the starfish as the symbol of our organization because it reminds us to keep going and never give up. It was inspired by The Starfish Thrower.
The Starfish Story“Are you sitting down?” These are not words a parent wants to hear in connection to their child but this time they heralded some extraordinary news: “We’ve found your gene.”
CDKL5 Origin StoryThe International Foundation for CDKL5 Research (IFCR) is proud to be the leading patient advocacy organization for CDKL5 Deficiency Disorder (CDD).
We Are IFCRThe International Foundation for CDKL5 Research began as a group of parents whose children had CDKL5 Deficiency Disorder. We came together and dared to dream of a new future for our children. With education and research, we believe a life-changing cure can be found.
In 2009, we incorporated the International Foundation for CDKL5 Research as a non-profit organization. Since then, we have funded ground-breaking research and established CDKL5 Centers of Excellence across the United States.
Various mutations on the CDKL5 gene are linked to a neurodevelopmental disorder by Dr. John Christodoulou and Dr. Vera Kalscheuer. In separate case-studies, they each link CDKL5 genetic mutations to a phenotype that overlapped with Rett Syndrome.
The International Foundation for CDKL5 Research incorporates as a 501(c)3 organization. We begin as a group of parents whose children have CDKL5 Deficiency Disorder (CDD). A small Yahoo group brings us together and we dare to dream of a new future for our children. With education and research, we believe a life-changing cure will be found.
We fund CDKL5 Knock-Out Mouse Model & CDKL5 Antibody Development with Dr. Cornelius Gross and Elena Amendola, PhD-post doctoral fellow in the European Molecular Biology Laboratory. This effort is in partnership with International Rett Syndrome Foundation (IRSF) and creates the first animal model missing its entire CDKL5 gene, a necessary tool for all drug-development research.
The IFCR welcomes Dr. Heidi Grabenstatter! She joins our team as Science Director and takes the reins in leading our research.
We fund Characterization of early neonatal EEGs in R175s and S855 mice and testing seizure susceptibility with Dr. Shilpa Kadam, Associate Professor of Neurology Director of the Pre-clinical In-vivo Electrophysiology Core, Kennedy Krieger Institute
Coming Soon
We funded a subset of the ICCRN team to develop a CDD Communication Measure for clinical trial readiness. This qualitative study aims to develop and field test domains of communication specifically for CDD.
There is emerging capability for disease modifying therapies such as gene therapy for CDD and these will be tested in clinical trials in the coming years. However, a critical barrier to strong clinical trial protocols is the lack of a broad complement of validated outcome measures across the spectrum of symptoms, with capacity to demonstrate meaningful interventional changes in how the affected individual feels and functions. There is currently no validated measure for communication in CDD.
Investigator team (alphabetical):
Coming Soon