2015 ANNUAL REPORT L i vi n g W e l l with an Unbreakable Spirit ® BOARD OF A Message From DIRECTORS PRESIDENT the President Mark D. Birdwhistell, Richmond, KY University of Kentucky Healthcare Dear Members: FIRST VICE PRESIDENT As you all know, the mission of the Osteogenesis Robin Wright, G.G., New York, NY Imperfecta Foundation is to improve lives of people living with OI. I am proud to report that Sotheby’s the work we have accomplished during the last SECOND VICE PRESIDENT fiscal year reflects the progress we have made in Alcides Ortiz, Esq., Potomac, MD fulfilling our commitment the OI community. Department of Defense It’s hard to believe that in June of 2016 I will end my tenure as President of the OIF Board of TREASURER Directors. It has been a pleasure and honor to Kenneth W. Gudek, Sr., Salem, NH serve as your volunteer leader these past three Technical Needs years. And, I’m delighted to share with you, SECRETARY through this report, some of the important milestones reached in the areas Michelle M. Duprey, Esq., of research, mutual support and education. New Haven, CT In 2014 the OI Foundation hosted the biennial conference in Indianapolis, Department of Services for Persons IN. The conference brought together more than 700 people from the with Disabilities OI community. Conference attendees attended workshops from OI specialists and had the opportunity to connect with old friends and make MEDICAL ADISORY new ones as well. At the meeting’s opening session Dr. Brendan Lee from COUNCIL CHAIR Baylor College of Medicine and a member of the OIF’s Medical Advisory Francis Glorieux, O.C., M.D., Council, announced that OI would be represented in the National Institute Ph.D., Montreal, Quebec of Health’s Rare Disease Clinical Research Network as the Brittle Bone Shriners Hospital-Montreal Disorders Consortium. He announced that the consortium clinical sites, including the OI Foundation, would receive $6.25 million in funding over a MEMBERS five year period to conduct clinical research. This funding is a direct result Kara Ayers, PhD, Mason, OH of the investment the OI Foundation and its supporters made in creating Cincinnati Children’s Hospital and funding the Linked Clinical Research Center project. Thank you! Kristen D. Antolini, Esq., Over the past year, the OI Foundation continued visiting members Morgantown, WV of Congress to update them on our work. Led by volunteers, the OI Hawkins Parnell Thackston and Foundation visited more than 20 congressional offices this year. And, in an Young LLP age where technology makes it easier to communicate with each other than ever before, the OI Foundation responded this past year to 6,500 requests Amanda G. Bergman, Potomac, MD for information, the website was visited 205,000 times and the Foundation Rolyn Companies, Inc. maintained an active presence on various social media outlets. Michele Burka, MBA, Tamarac, FL We must thank our partners the Bennett Clayton Foundation, the Children’s Jody W. Cheek, M.Ed., Brittle Bone Foundation and others for their support of programs like the Johnson City, TN OIF Regional Conferences and the CBBF/OIF Impact Grants. None of this work could have happened without the generous support of these Eric Gould, Miami Beach, FL organizations and from the contributors listed on the following pages. Thurman Gould Thank you for your gifts! Joe Hall, Columbia, SC Throughout the next year the OI Foundation will continue to build on the Cameron Penn, Manhattan Beach, CA success of the year before and move our mission forward. Information on Hey Guy Media progress from the Brittle Bone Disorders Consortium will be made available throughout the year in Breakthrough and in the OIF’s e-newsletters as well Ian Sacks, New York, NY as on the official OIF Facebook page. And as always, please contact the TowerBrook Capital Partners, LP Foundation with any questions or concerns you may have. Carolyn R. Tipton, Los Angeles, CA Thank you for your involvement in the work of the OIF and for your Laura Tosi, MD, Washington, DC generous support this year. Although my term as a member of the Board of Directors will soon end I will continue to work, with all of you, to support Children’s National Medical Center our Foundation. Thank you, Mark D. Birdwhistell 2 | 2015 ANNUAL REPORT MEDICAL ADVISORY COUNCIL CHAIR Francis Glorieux, O.C., M.D., Ph.D. – Chairman • Canadian Shriners Hospitals for Children, Shriners Hospitals for Children, Montreal, Quebec and McGill University in Montreal. • Principal Investigator, OI Foundation Linked Clinical Research Center in Quebec. Peter Byers, M.D. • University of Washington School of Medicine, and University of Washington School of Dentistry, Seattle, WA. • Genetic Medicine Clinic, University of Washington Medical Center, Seattle, WA. Hollis Chaney, M.D. • The George Washington University School of Medicine Awareness and Health Sciences, Washington, DC. rom May 2-9, 2015, the OI Foundation held its sixth • Children’s National Health annual National OI Awareness Week, involving System, Washington, DC, as volunteers across the country in holding awareness Vice Chair of the Division of F Pulmonary Medicine. and fundraising events within their communities. Volunteers proclaimed OI Awareness Week in over 10 cities and states, Paul Esposito, M.D. • Clinical Service Chief, Pediatric held multiple walks and events nationwide and displayed Orthopedic Surgery Surgeon, more than 300 official OI Awareness Week posters. Over Children’s Hospital and Medical 30 hosts participated in Bone China Tea 2015 on Monday, Center, Omaha, NE. May 4, 2015. The OIF also participated in Wishbone Day, • Professor of Orthopaedic the international day of OI Awareness held on May 6th each Surgery and Pediatrics, University of NE Medical year, by sharing facts and information about OI on our social Center, Omaha, NE. media sites every hour for 12 consecutive hours. We reached • Co-Director for The OI Clinic at over 175,000 people through our National OI Awareness Children’s Hospital and Medical Week social media campaign called [SHAREforAWARENESS]. Center in Omaha. National OI Awareness Week and Wishbone Day help raise Deborah Krakow, M.D. awareness about OI all over the world. • UCLA, David Geffen School of Medicine, Los Angeles, CA. • American Board of Medical Genetics board member. • American College of Obstetrics and Gynecology policy committee on Genetics. 2015 ANNUAL REPORT | 3 MEDICAL ADVISORY COUNCIL (continued) Richard W. Kruse, D.O., M.B.A. • Vice Chair Department of Orthopedics and Chief of the Orthopedic Trauma Service at Nemours/Alfred I. duPont Hospital for Children in Wilmington, DE. • Professor of Orthopaedic Surgery Thomas Jefferson University College of Medicine in Philadelphia, PA and the Uniformed Services University School of Medicine in Bethesda, MD. • Co-Director for the multidisciplinary OI program at Nemours/Alfred I. duPont Dr. Glorieux answers questions at the Uniting Unbreakable Spirits Hospital for Children in Regional Conference in Stamford, CT Wilmington, DE. Brendan Lee, M.D., Ph.D. • Baylor College of Medicine, Houston, TX. • Principal Investigator, Brittle Bone Disorders Consortium, National Institutes of Health Rare Diseases Clinical Research Network. Joan Marini, M.D., Ph.D. • Chief, Bone and Extracellular Matrix Branch, National Atticus and Debbie Shaffer at the Uniting Unbreakable Spirits Regional Institute of Child Health and Conference, Los Angeles Human Development (NICHD), National Institutes of Health, Bethesda, MD. Regional Conferences • Director of Translational Research Program on OI at n an effort to bring information and resources to more NICHD. members of the OI community, the OIF held regional • Principal Investigator, NICHD conferences in Los Angeles, CA, Stamford, CT, and Pediatric Research Program. I Minneapolis, MN. Combined, the meetings reached 600 Cathleen Raggio, M.D. members of the OI community and more than half of the • Hospital for Special Surgery, attendees had never been to an OI event before…welcome New York, NY, Orthopedic Surgeon. to the community! The one-day conferences featured educational sessions led by OI experts including OIF Medical • Co-Director of the Kathryn O. and Alan C. Greenberg Center Advisory Council members Dr. Jay Shapiro, Dr. Cathy Raggio, for Skeletal Dysplasias. Dr. Laura Tosi, Dr. David Vernick, Dr. Deborah Krakow and Dr. Francis Glorieux. 4 | 2015 ANNUAL REPORT Scientific Meetings MEDICAL ADVISORY COUNCIL (continued) n April 2015, scientists from the United States, Canada Frank Rauch, M.D. and the United Kingdom gathered in Chicago for the 14th • Canadian Shriners Hospitals for Annual OIF Scientific Meeting. The meeting, titled New Children, and McGill University I Faculty of Medicine, Montreal, Directions in OI Research, was chaired by Dr. Cathy Raggio Quebec, Canada. of Hospital for Special Surgery in New York and Dr. Deborah • Director, Biomedical Krakow from UCLA. Both Dr. Raggio and Dr. Krakow serve Laboratory, Shriners Hospitals on the OI Foundation’s Medical Advisory Council. The for Children, Montreal, Quebec. meeting reviewed progress made over the past 15 years in • Editor of the Journal of the study of osteogenesis imperfecta and looked ahead to Musculoskeletal and Neuronal the future with talks from experts on orthopedics, genetics, Interactions. dental manifestations and current medical treatment David Rowe, M.D. available to adults and children with OI. The conference was • University of Connecticut Health Center, Farmington, CT. made possible by the generous support of the Buchbinder Family Foundation. • Director for Regenerative Medicine and Skeletal Development, University of Connecticut. Research Grants Sandy Sandhaus, M.D., Ph.D. • University of Colorado School he OI Foundation awarded a second year of funding to of Medicine, and National Jewish Health, Denver, CO. Dr. Brya Matthews from the University of Connecticut. • Clinical Director at the Alpha-1 Her research focuses on examining approved drugs T Foundation, Denver. CO. that block TNFa. TNFa is elevated in oim mice, which may • Medical Director and Executive contribute to increased bone turnover.