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 operations 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.
At the OI Foundation, we believe nothing short of a real transformation is needed to reform the systems that continue to perpetuate racism in this country. We stand firmly with those calling for immediate and concrete change.
We are committed to elevating and amplifying the voices of the individuals and families we serve and we will continue to be a voice for the OI community.
We are dedicated to expanding our reach to ensure the OIF’s programs and services are accessible to every person with OI.
We are committed to advancing equity and inclusion in every aspect of our work.
And while we may only play a small part in the formal and complicated process to reform the system and disrupt the culture, we know it will take all of us working together.
June 23, 2020 – The OI Foundation is conducting an internal review of our programs and services to determine how we can be more inclusive as a Foundation in order to support the entire OI community. We will release more information with action steps at a later date.
December 14, 2020 – The National Health Council (NHC) and National Minority Quality Forum (NMQF) released a Consensus Statement that serves as a public commitment to reduce inequities within the health care system. We are proud to announce that the OI Foundation is one of the 58 Voluntary Health Agency member organizations that signed the Statement. Click here to read the full Consensus Statement on Health Equity.
April 2021 – We are proud to partner with diversity, equity and inclusion professional (and OI community member!), Chaz Kellem. Chaz has ten years of experience as a diversity, equity, and inclusion professional. He currently serves as the Director of PittServes, a program that provides University of Pittsburgh students the opportunity to engage in ethical and sustainable service to the community on a local, national and international scale. Chaz is active and committed to the community, as he serves on several non-profit boards including ACHIEVA, Best Buddies PA and Miracle League of Moon. The OI Foundation is thrilled to have Chaz on our team as we continue our work to support the entire OI community. Click here to learn more.
August 2021- The OI Foundation has completed the initial phase of the OIF’s diversity, equity, and inclusion project. This first phase was designed to assess the OIF’s programs, activities, and business structures. With the help of diversity, equity and inclusion professional, Chaz Kellem, we conducted an internal review of our programs and services to determine how we can be more inclusive as a Foundation in order to support the entire OI community. The next phase of this project will consist of incorporating OI Foundation staff training and development, business recommendations, board development, community engagement practices, and more. Learn More