The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support.
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 people affected by OI through research to find treatments and 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, support families and 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.
Since 1970, the OI Foundation’s funding for research has doubled every five years, for a total investment of more than $3.3 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 Scientific Review Committee, which includes many preeminent OI researchers and clinicians. Funding also supports the OI Registry and the Linked Clinical Research Centers. Funded research increases potential for advances in gene therapy, a new diagnostic test and drug therapies under study.
The Foundation’s principal education event is the OIF National Conference, which provides more than 570 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.
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, DVDs, and the website.
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 36 support and network groups in 26 states to expanding resources or raising funds, the OI community and Foundation staff provide quality support services to more than 100,000 people each year.