What is CYFIP2 Early Infantile Epileptic Encephalopathy?

EIEE: Early Infantile Epileptic Encephalopathy or Developmental and Epileptic Encephalopathy

or sometimes referred to as Ohtahara Syndrome.

CYFIP2 EIEE is a rare neurodevelopmental condition that is caused by a variation in the CYFIP2 gene (EIEE-65). Associated symptoms have included medication resistant seizures, severe leukopenia/neutropenia (trend), speech delays, feeding/swallowing difficulties, GERD, vision impairments, developmental delays, hypotonia, and others.

It is a condition that no parent expects that their child will go through and interrupts families while welcoming their little one into the world, during the early days of life. We help our babies to achieve the every day tasks that we don't even think about, and watch them work so hard to master them. These tasks include eating, walking, sitting, talking, grasping objects and others. We celebrate these milestones as our children have worked so hard to get there after overcoming so much in their lives.

About Us and Our Mission

Each rare condition on their own may be rare, but there are many rare conditions as a whole. Through genetic testing, more are being identified. The road to a treatment for rare conditions is usually not easy but we hope to provide the necessary resources to help the research get there. No parent ever imagines that they will need to learn these steps in order to help their child become one step closer to a treatment. CYFIP2 Network was founded to support families and research of CYFIP2 EIEE. We do this by working to build the resources needed to help families and researchers on the road to a cure.

Contact Us

CYFIP2 Network (FEIN: 93-4821164) is a 501(c)(3) non-profit organization.