FY 2009 annual RepORt - Osteogenesis Imperfecta Foundation

A Message from the President
Roger Bache
The mission of the OI Foundation is to improve the quality of life for people with OI through
education, mutual support, awareness and funding research to find treatments and a cure. All
activities of the Foundation are based upon these four mission areas and the OIF board and staff
remain committed to achieving our mission and goals.
I am pleased to report that the OIF made progress in a number of key areas in 2009. Despite a
difficult economic situation, our foundation continued to thrive based on the hard work of our OIF
staff and the grassroots fundraising activities within our community. In this annual report, you will
read about the progress we have made and many of the activities that impacted the OI community
this past year.
Of significance, we selected three additional Linked Clinical Research Centers (LCRCs) to
coordinate and enhance care to people with OI. The three new sites are: Shriner’s Hospital in
Montreal, Shriner’s Hospital in Chicago and the the Eunice Kennedy Shriver National Institute
of Child Health and Human Development (NICHD), division of Intramural Research, in Bethesda,
MD. We now have six LCRCs and we are convinced that this initiative will significantly improve
information exchange and medical care for those with OI. The LCRCs continues to be one our top
priorities.
In 2009 the OIF funded three seed grants, three 2 nd -year Michael Geisman Research Fellowships,
3 new LCRC grants and three 2 nd -year LCRC grants. The Foundation also funded grants for the OI
Registry and the annual OI Science meeting held in Chicago. As you may have noticed, our OIF
web portal is better than ever and it is being visited by more people than ever. In fact, we have
seen a decrease in telephone requests at our OIF office as more people rely on our web site to
obtain information. We are very grateful to the Buchbinder family for their generous support in
funding our annual science meetings and to the Bergman family for making possible our web portal
upgrades.
In the news you may have read about fellow board member Anna Curry’s successful climb of Mt
Kilimanjaro to raise money and awareness for OI. As an organization we are successful because of
the enthusiasm and dedication of so many people like Anna. Year after year, dedicated volunteers
conduct golf tournaments, dinners, fun walks, and other events that provide the necessary funding
to sustain and grow the OI Foundation. We are also very thankful for the generosity of so many
people who continue to make generous donations to fund research and other key initiatives. On
behalf of the OIF board of directors and OIF staff, I want to thank you for all of your hard work and
continued support.
In closing, we are looking forward to 2010. We are excited about the new “Impact Grant” program
made possible by the superb fundraising efforts of the Children’s Brittle Bone Foundation (CBBF).
This new program will provide needed assistance to many in the OI Community. We are also excited
about our 2010 national conference in Portland, Oregon this July. We have an outstanding agenda
and a number of wonderful speakers planned for this year’s conference. We hope to see you all In
Portland!
Roger W. Bache
President, OI Foundation Board of Directors
Th e OsTeOgenesis imperfecTa fO u n d aT i O n’s missiOn
The mission of the Osteogenesis Imperfecta Foundation 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.
2 OI FO u n d at I On FY 2009 an n u a l Re p O Rt