Welcome to the Respiratory and Autonomic Disorders of Infancy, Childhood, and Adulthood Foundation for Research and Education or RADICA-FRE. This organization was founded by Tammy Ullum, who has a son with Congenital Central Hypoventilation Syndrome (CCHS), and Liz Cooleen, who has a daughter with Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation (ROHHAD). Recently, the direction of this wonderful organization had been turned over to myself, Lauren McCullar, and I too have a son with CCHS. Tammy and Liz founded RADICA-FRE with the hopes that through research and education that together we can help to ensure a better quality of life for affected children.
The main focus of RADICA-FRE is research and education, and this group will be composed of parents, adult patients with CCHS and ROHHAD, grandparents, and physician-scientists. Participation in this new organization will empower you to ask questions and share your observations about these disorders with physician-scientists, thereby directing avenues of future research.
The goals of RADICA-FRE are to empower families by: 1) disseminating information pertaining to newly published data from or recruitment for future studies in RADICA, 2) creating a venue in which patients can enter into a dialogue with physician-scientists from RADICA Centers of Excellence, and 3) increasing public awareness of RADICA.
Thank you for your interest in RADICA-FRE! Please look around and let me know if you have any comments or suggestions.