The International Foundation for CDKL5 Research (IFCR) is a 501(c)(3) non-profit that was founded in 2009 by a dedicated group of parents committed to finding a cure for their children affected by CDKL5. The IFCR’s mission is to lead the way in finding a cure and treatments for CDKL5 disorders by funding global research efforts, and increasing awareness of CDKL5 disorders, while enhancing the quality of life for those affected by CDKL5 disorders, by providing information, programs, and services.
CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. There are fewer than 200 cases worldwide, however, more and more children are being diagnosed as awareness of CDKL5 spreads. CDKL5 stands for cyclin-dependent kinase-like 5, and is located on the X chromosome.
Most of the children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined to a wheelchair, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties.
Scientists and doctors do not know what causes CDKL5 mutations or the full spectrum of CDKL5 disorders at this time. It is likely that there are many people affected by CDKL5 who have mild symptoms and no seizures. With continued research and awareness of CDKL5, the IFCR hopes to build a more comprehensive understanding of the spectrum of this disorder, and begin the search for a desperately needed cure.
- Location: Wadsworth, Ohio
- Visit the website: cdkl5.com