The Osteogenesis Imperfecta Foundation, Inc. (OI Foundation) is the only voluntary national health organization dedicated to helping people cope with the problems associated with osteogenesis imperfecta. The Foundation's mission is to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support. The OI Foundation began in 1970 when a small group of parents from around the nation met in Chicago to discuss OI and its problems. At that time, they banded together to stimulate public and professional interest and to encourage research. Today, many of the people who serve on the board of directors and oversee the Foundation's operation have OI themselves or are parents of children with OI.
The Mission of the
OI Foundation
Research: Since 1970, the OI Foundation has doubled funding for research every five years, for a total investment of more than $1 million. Funding is available for postdoctoral fellowships to encourage new investigators to begin a career in OI research, and seed grants for preliminary research. All applications are reviewed by the Foundation's Medical Advisory Council, which includes many preeminent OI researchers and clinicians. The potential for results in OI research is growing, with recent advances in gene therapy, a new diagnostic test, and drug therapies under study.
Education: The Foundation's principal education event is the biannual national conference, which provides close to 500 people with medical, research, and coping information. For many, it's the first opportunity to meet others who are living with OI. In addition, the Foundation is continually developing new information resources in response to the needs of families, individuals, and professionals working with those affected by OI. Topics covered include schooling, pain management, psychosocial needs of the family, child abuse, fracture management, and osteoporosis.
Awareness: The Foundation strives to build public awareness and generate additional support among individuals, community organizations, public agencies, and medical professionals. Up-to-date information on OI--from medical issues to daily living strategies--is available via phone, Internet, fax, and mail. The Foundation also reaches out with print publications, press releases, videos, and the web site. Mutual Support: Improving quality of life is a continuing challenge that our small group of staff and enormous army of volunteers work constantly to achieve. From hosting support groups in 21 states and expanding resources, to hosting our online chat room or raising funds, Foundation volunteers provide quality support services to people with OI.
For more information about the Foundation's mission, programs, and services, contact the national office. Copies of the Annual Report and IRS Form 990 are
available upon request.
Free web hosting for non-profit organizations
provided by 1-2-Wonder Web Services