The Cortical Foundation, founded in 2011, is a non-profit organization. Founded by individuals whose families have been affected by various cortical malformations, we understand the challenges patients and their families face.
The Cortical Foundation grew out of a desperate need for answers after our families realized that no one, not even the medical community, knew much about these rare disorders. We wanted to build a place where families could go to get current information on these disorders, share with other families, and organize to support research efforts. We focus on cortical malformations, as a whole, because they are all rare, congenital, often genetic disorders affecting the cerebral cortex. These disorders are not only seen together at times, but they share a triad of common manifestations including developmental delays, intellectual disabilities, and epilepsy.
The Cortical Foundation is dedicated to providing services to educate, advocate, support, and improve awareness of cortical malformations.
How We Accomplish Our Mission
The Cortical Foundation fulfills its mission through a comprehensive strategy that includes directly funding research, advocating for increased federal dollars for cortical malformation researchers around the country, providing patient services, and extending community outreach and education nationwide through a network of dedicated volunteers.
- People with cortical malformations will live longer and more fulfilling lives.
- Early detection tools and more effective treatment options for cortical malformations will exist and be accessible.
- The true prevalence and incidence of each cortical malformation will be known.
- Healthcare professionals will appropriately identify and diagnose cortical malformations, and their related conditions, and refer those patients to specialists.
- Healthcare professionals will be able to provide an accurate prognosis based on the genetic genesis of a cortical malformation.
- All families affected by cortical malformations will actively consider participation in genetic studies.
- There will be comprehensive, evidence-based information on cortical malformations at no cost.
- Sufficient and sustained federal and private cortical malformation funding will result in meaningful scientific breakthroughs, more researchers attracted to this field of study, and fewer births with cortical malformations.
- A robust, collaborative cortical malformation research community will flourish.
- Volunteers and supporters will join the national effort to increase awareness, raise funds, and advocate for cortical malformation communities across the country.
- Corporate partners, cause marketing efforts, and celebrities will raise the visibility of cortical malformations and the Cortical Foundation.
- The Cortical Foundation will be the worldwide leader in providing research funding to better understand and help eliminate cortical malformations.