FY 2012 Annual Report
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2012 ANNUAL REPORT TM BOARD OF DIRECTORS A Message From the President President he mission of the Osteogenesis Imperfecta Foundation is to Sharon Trahan, Shoreview, MN improve lives. I am proud to report that the work we have Fusion Living Taccomplished during the last fiscal year reflects the steps we First Vice President have made in fulfilling our commitment to you, the OI Foundation Mark Birdwhistell, contributor and friend. Lawrenceburg, KY University of Kentucky Healthcare As you will read in the report, we have continued to focus our efforts in 2012 in the areas of improving the health of people living Second Vice President with OI, implementing coordinated research activities, supporting Gil R. Cabacungan, III, Oak Park, IL the OI community and increasing education and outreach. Abbott Laboratories In 2012 the OI Foundation hosted the biennial conference titled Treasurer “Awareness, Advocacy, Action.” The conference brought together Anthony Benish, Downer’s Grove, IL Cook Illinois Corp. more than 700 people from the OI community. Conference attendees attended workshops from OI specialists and had the Secretary opportunity to connect with old friends and make new ones as well. Michelle M. Duprey, Esq., Prior to the start of the conference 105 people traveled to Capitol New Haven, CT Hill and visited more than 40 congressional offices, giving legislators Department of Services for Persons and their staff information about OI and our effort to increase OI with Disabilities research at the federal level. Medical Adisory Council Chair The work of the Linked Clinical Research Centers continued and in Francis Glorieux, OC, MD, PhD, 2012 enough data was collected to begin the work of publishing Montreal, Quebec Shriners Hospital-Montreal findings, facts and trends. The OI Foundation also continued funding two Michael Geisman Fellows through the research grant MEMBERS process and a clinical research grant was awarded to Dr. Jay Shapiro at Kennedy Krieger, which will hopefully lead to a better Kristen D. Antolini, Esq., Morgantown, WV understanding of heart conditions in OI. Hawkins Parnell Thackston and Young LLP And, in an age where technology makes it easier to communicate with each other than ever before, the OI Foundation responded Amanda G. Bergman, Potomac, MD to 6,500 requests for information, the website was visited 205,000 Rolyn Companies, Inc. times and the Foundation maintained an active presence on various social media outlets. Jody W. Cheek, M.Ed., Johnson City, TN None of this work could have happened without the generous support of the contributors listed on the following pages. Thank Anna C. Curry Gualano, Birmingham, AL you for your gifts! Littler Mendelson, P.C. The OI Foundation works hard to use the generous support in the Kenneth W. Gudek, Sr., Salem, NH best way possible to support as many people as possible. Technical Needs Throughout the next year the OI Foundation will continue to build Alcides Ortiz, Esq., Potomac, MD on the success of the year before and move our mission forward. Department of Defense Thank you for your involvement in the work, and for your confidence in your Foundation. Ian Sacks, New York, NY TowerBrook Capital Partners, LP Sharon Trahan Carolyn R. Tipton, Los Angeles, CA Robin Wright, G.G., New York, NY Sotheby’s SharonSh TrahanT h 2 | 2012 ANNUAL REPORT MEDICAL ADVISORY Awareness COUNCIL Chair n May, the OI Foundation held Francis Glorieux, MD, PhD its second National OI Shriners Hospital for Children I Awareness Week, involving Montreal, Quebec, Canada volunteers across the country MEMBERS in holding awareness and Peter Byers, M.D. fundraising events within University of Washington their communities. Awareness Seattle, WA Week 2013 will take place Hollis R. Chaney, MD May 4-11, 2013, and on May 6, Children’s National 2013, the Foundation will officially participate in Wishbone Medical Center Day, an international awareness event that will help to raise Washington, DC awareness about OI all over the world! Awareness Week Holly Cintas, PT, Ph.D volunteers secured city and state proclamations declaring it National Institutes of Health OI Awareness Week, 15 new OI fundraising events were held Bethesda, MD and articles appeared in more than 15 newspapers around Paul Esposito, M.D. the country about OI. Children’s Hospital Omaha, NE Lynn Gerber, M.D. National Conference 2012 George Mason University Fairfax, VA n July 2012, the OI Foundation James K. Hartsfield, Jr. DMD, PHD held its biennial National University of Kentucky College Conference in Washington, of Dentistry I Lexington, KY DC. More than 700 people attended this conference Deborah Krakow, M.D. themed “Awareness, Advocacy, Cedars-Sinai Medical Center Los Angeles, CA Action!” Prior to the start of the conference, 105 people traveled Brendan Lee, M.D., Ph.D. to Capitol Hill for the OI Foundation’s advocacy day and Baylor College of Medicine Houston, TX visited 40 congressional offices giving legislators and their staff information about OI and our effort to increase OI Joan Marini, M.D., Ph.D. research at the NIH. The advocacy day kicked off with a National Institutes of Health Bethesda, MD presentation to Congressman “Dutch” Ruppersberger, D-MD – he was awarded the Advocacy Unbreakable Spirit™ Cathleen Raggio, M.D. Award for his effort in helping Hospital for Special Surgery New York, NY improve awareness about OI. Participants visited their Frank Rauch, M.D. legislators and in one special Shriners Hospital for Children Montreal, Quebec, Canada case were greeted by House of Representatives Speaker of the David Rowe, M.D. House, John Boehner. University of Connecticut Health Center Farmington, CT 2012 ANNUAL REPORT | 3 Jay Shapiro, M.D. The 2012 National Conference also presented the first Kennedy Krieger Institute Women’s Forum coordinated by board members Michelle Baltimore, MD Duprey and Anna Curry Gualano. The forum, open only to Robert (Sandy) Sandhaus, women living with OI, explored issues that directly affect M.D., Ph.D. women including nutrition, sexuality, pregnancy and overall National Jewish Medical & Reseach Center women’s health. The forum was a success and will be Denver, CO repeated at the 2014 National Conference. Peter Smith, M.D. The conference included three days of sessions on topics Shriners Hospital Chicago, IL ranging from home splinting to updates on the most current research being done in the field that may lead to improved Robert Steiner, M.D. treatments. Oregon Health and Science University Portland, OR V. Reid Sutton, M.D. Linked Clinical Research Centers (LCRC) Baylor College of Medicine Houston, TX he OI Foundation, in partnership with the Children’s Brittle Bone Foundation, continued funding five LCRCs Laura Tosi, M.D. Children’s Hospital National T and reached its enrollment goal of 500 people in the Medical Center natural history study in 2011 and increased the number to Washington, DC 20010 605 in 2012. Dr. Reid Sutton, the LCRC’s project manager, David Vernick, M.D. released preliminary information on findings from the study Harvard University and has submitted those findings for publication in scientific Boston, MA journals. Publication will take place in early 2013. Matthew Warman, M.D. Boston Children’s Hospital Boston, MA Scientific Meetings Michael Whyte, M.D. Shriners Hospital for Children n April, 100 scientists gathered for the OIF annual scientific St. Louis, MO meeting in Chicago, IL. Dr. Laura Tosi chaired the meeting I titled, Assessing the Impact of Osteogenesis Imperfecta on Nonskeletal Systems, which focused on the impact of abnormal collagen on health in an effort to broaden professional awareness of the full spectrum of issues faced by person living with OI as they age. A workshop report was compiled and submitted for review. This meeting was a continuation of the ANHI (Adult Natural History Initiative) addressing health concerns that were identified by more than 1100 adults living with OI who responded to a survey. The meeting will contribute to research that will enhance knowledge of the natural history of OI and lead to the development of educational resources for patients and providers that provide reliable, relevant and understandable information about treatment options and their risks and benefits. The conference was made possible by the generous support of the Buchbinder Family Foundation. 4 | 2012 ANNUAL REPORT In September 2012, the OI Foundation took the lead role in presenting a scientific meeting focusing on rare bone diseases, including OI. The meeting titled Rare Bone 2012 Disease Research Summit – Future Directions, brought MEMBERS together the leaders in rare bone disease research and was chaired by Dr. Jay Shapiro of Kennedy Krieger in Baltimore, Joan Ablon, Ph.D. MD and a member of the OI Foundation’s Medical Advisory Mr. Thomas Acquafredda Council. The meeting goals included presenting a status Traci, Daniel & Evin Adcock update on the most current rare bone disease research Ms. Diana Alaniz and developing strategies to accelerate such research in Ms. Kristen Antolini the future. Speaker abstracts were submitted to the journal Mr. Harry Appelman Seminars in Arthritis and Rheumatism and were published in Ms. Cindy Assmann February 2013. Mrs. Wanda Bachman Lamar & Freda Baker Additionally, Dr. Shapiro, on behalf of the OI Foundation, led Ms. Mikell Baldwin a working group at the 2012 ASBMR (Association for Bone Bruce & Dee Baraw and Mineral Research) meeting in Minneapolis, MN. The Allan & Aimee Bauer working group focused on rare bone disease research and Mr. Michael Bellas continued the discussion from the Research Summit on how Anthony & Jennifer Benish to collaborate in an effort to accelerate rare bone disease Mr. Christopher M. Benjamin research. Young investigators and senior scientists attended Dr. Joan Berry this “sold out” working group. Another working group will Steven & Jacquelyn Biagini be held in 2013 and led by the OI Foundation. Holly & Carrick Boffy Ms. Bonnie Bolden Ms. Vickie Bolden Mrs.