Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease”. (See OIF.org website for more information.)
Established in 2003, The Bennett Clayton Foundation for Children with OI works to benefit all children with Osteogenesis Imperfecta. The DeBlieck Family organized BCF in honor of Bennett after he was diagnosed with OI at the age of one.
Financial support by generous individuals and corporations enables the foundation to provide support to OI families in the form of personal health grants, college scholarships, social and educational gatherings, research funding and financial assistance for conference attendees.
The Bennett Clayton Foundation recognizes the importance of research into the cause, treatment and possible cure for Osteogenesis Imperfecta. When we become aware of studies related to OI, we attempt to share that information with BCF friends.
Although the foundation provides financial support for research being conducted on behalf of the OIFoundation, we do not specifically endorse any ongoing projects. We will, however, post research information on the BCF website as it is received from the OIFoundation.
One such opportunity has come to our attention. The Hospital for Special Surgery is currently investigating cardiopulmonary outcomes and quality of life in adults with OI. For more information, please follow this link to complete a questionnaire: http://j.mp/2SUjerF or contact the Osteogenesis Imperfecta Foundation.
Disclaimer: The Bennett Clayton Foundation is not involved in the design or management of this research, and as such, is neither endorsing nor supporting this study. This information is made available as a service to the OI community.