Bennett Clayton Foundation
Working to enhance the lives of children and families living with Osteogenesis Imperfecta.
The largest crowd we’ve eve had for our tournament! Thanks to everyone who attended despite the social distancing. Golf is the best place to social distance. Thank you to all the participants, donors and volunteers!
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 Chloe Barnes Advisory Council on Rare Diseases was recently funded by the State of Minnesota.
The Legislature agreed to fund the council – to be housed at the University of Minnesota Medical School – for four years. The Council’s goal is to work across rare diseases, serving as a clearinghouse for clinical trials, natural histories, and FDA drug approval.
Under the direction of Erica Barnes, the council has worked quickly to develop a patient survey which will help them identify barriers to care in the rare disease community. They welcome participation in this survey by the OI community.
To complete the survey, click on the OI Survey button.
For more information about the council, go to http://cbacraredisease.org/.
The Bennett Clayton Foundation is not involved in the design or management of this survey, and as such, is neither endorsing nor providing financial support to the survey. Information is made available as a service to the OI community.
Click on this button take the OI Community Survey.