Chiari Cares (formerly NFCF) is lighting the way of research, education and patient/family support and guidance. We as a family have experienced the Chiari journey twice and learned that there is a wealth of information waiting to be found about this condition. Chiari Cares has joined forces with Dr. Kerry Crone, Director Pediatric Neurosurgery at Cincinnati Children’s Hospital Medical Center to be on the forefront of medical research, clinician and community education and patient support.
"The Fitzpatrick Fund will provide the opportunity for CCHMC to move forward in our mission to further understand the pathology and physiology of Chiari malformation and our goal to develop a classification system that better describes the condition. Long term studies are needed to provide information regarding the functional outcome for children with Chiari. We have a large population of families with familial Chiari malformations. Working with our genetic division we hope to identify specific patterns that may be of benefit to those families. Every dollar raised will be used in our goal to further understand the condition, its natural history in those untreated, inheritance patterns in familial cases, and functional outcomes in all children." ~ Dr. Kerry Crone
Arnold Chiari Malformation type 1 is a devastating diagnosis any parent can receive regarding their precious child. Experiencing the chiari journey twice made us realize that there are too many uncertainties and unknowns concerning this condition.
Our mission is to clarify the uncertainties, identify and define the unknowns and begin to focus on the future of Chiari. Chiari Cares will allow Cincinnati Children’s Hospital Medical Center the opportunity to further their mission of understanding and researching the physiology of Chiari 1, and developing a better classification system.
Secondly, Chiari Cares will focus on creating community awareness and clinician education regarding signs, symptoms, treatment options and care of individuals.
The final mission of Chiari Cares is to be a source of support for patients and families as they experience the chiari journey.