FY 2014 Annual Report

2014 ANNUAL REPORT Living Well with an Unbreakable Spirit® BOARD OF DIRECTORS A Message From PRESIDENT Mark D. Birdwhistell the President Richmond, KY Dear Members: FIRST VICE PRESIDENT Robin Wright, G.G. On behalf of the OI Foundation Board of New York, NY Directors I would like to thank you, the members of the OI Foundation, for your generous support SECOND VICE PRESIDENT in 2014. Together we accomplished important Alcides Ortiz, Esq. work in our mission to improve the lives of Potomac, MD individuals and families living with OI. TREASURER We are especially excited that we received the wonderful news that the OI research community, Kenneth W. Gudek, Sr. including the OI Foundation, would now be a Salem, NH part of the National Institute of Health’s Rare SECRETARY Diseases Clinical Research Network. The Brittle Michelle M. Duprey, Esq. Bone Disorders Consortium, with the cornerstone of research focusing New Haven, CT on osteogenesis imperfecta, will expand the existing OI natural history study and will launch five new pilot projects including a Phase I drug trial, MEDICAL ADVISORY COUNCIL a biomarkers study, a pregnancy study and a scoliosis study. All of these CHAIR studies will be made possible the inclusion of the OI community in the Francis Glorieux, OC, MD, Ph.D. Brittle Bone Disorders Consortium Contact Registry. You will be receiving Montreal, Quebec information this spring on how to enroll in the contact registry. It was especially rewarding to receive this news at the 2014 OIF National MEMBERS Conference in Indianapolis where more than 700 people gathered for Kara Ayers, Ph.D. three days of information sharing, networking and connecting with old Mason, OH and new friends. Other exciting news shared at the conference included the expansion of regional meetings where the OIF will bring medical Kristen D. Antolini, Esq. professionals and new information to cities across the country each year Morgantown, WV for a one day meeting. The first OIF regional meeting was held in Tampa, Florida in 2013 and was such a success, thanks to the hard work of the Amanda G. Bergman Florida Support Group, that a series of meetings will be held in cities in Potomac, MD 2015 including Los Angeles, CA; Stamford, CT and Minneapolis, MN. Michele Burka, MBA We are so fortunate to have Tracy Hart’s dedicated leadership at the OIF. Tamarac, FL She and the outstanding Foundation staff make all of the things that we do possible and managed a very full 2014! The annual OIF scientific meeting Jody W. Cheek, M.Ed. chaired by Dr. Frank Rauch from Montreal Shriners Hospital for Children Johnson City, TN attracted more than 70 researchers to discuss topics important to the OI research community. And, the OI Foundation continued to advocate on Eric Gould behalf of the OI community. In partnership with the with Rare Bone Disease Miami Beach, FL Advocacy Alliance members of the OI Foundation staff and volunteers Joe Hall visited Capitol Hill and educated lawmakers and staff about living with a Columbia, SC rare bone disease and thanked them for their support of the NIH’s Rare Diseases Clinical Research Network. Cameron Penn Thank you for supporting the work of the OI Foundation. Together, we Manhattan Beach, CA continue making a difference in the lives of the 50,000 people living with osteogenesis imperfecta. Ian Sacks New York, NY Sincerely, Carolyn R. Tipton Los Angeles, CA Laura Tosi, MD Mark D. Birdwhistell Washington, DC President 2 | 2014 ANNUAL REPORT MEDICAL ADVISORY COUNCIL CHAIR Francis Glorieux, O.C., M.D., Ph.D. http://f1000.com/ prime/thefaculty/ member/1819023647352203 • Genetics Unit, Canadian Shriners Hospitals for Children, Shriners Hospitals for Children, Montreal, Quebec • Dr. Glorieux is a Director of the OI Foundation Linked Clinical Research Center in Quebec. Brendan Lee, M.D. Dr. Brendan Lee, Principal Investigator of the BBD RDCRC https://www.bcm.edu/ departments/molecular-and- human-genetics/?pmid=10940 • Robert and Janice McNair NIH Rare Diseases Endowed Chair in Molecular and Human Genetics Consortium Grant • Professor of Molecular and Human Genetics, t the 2014 OIF National Conference it was announced Baylor College of Medicine, that the OI Foundation is part of a team that will be Houston, TX receiving funds from the NIH to form the Brittle Bone • Professor, Programs in A Integrative Molecular Disorders Rare Disease Clinical Research Consortium (BBD and Biomedical Sciences; RDCRC). This network will conduct clinical research and will Developmental Biology; and incorporate the Linked Clinical Research Centers and the Translational Biology longitudinal study of OI. The clinical research will include a & Molecular Medicine, Baylor College of Medicine, Phase I drug study, a study on scoliosis in people with severe Houston, TX OI, pregnancy and OI, dentiogenesis imperfecta and other • Investigator, Howard Hughes dental/craniofacial issues and OI, a biomarkers study and Medical Institute, a quality of life and OI study. This is the only rare disease Baylor College of Medicine, network at the NIH that is studying bone and specifically OI. Houston, TX The OI Foundation will be responsible for developing a new • Director, Center for Skeletal Medicine and Biology, professional education website, as well as providing scientific Baylor College of Medicine, meetings that will train the next generation of OI researchers Houston, TX and physicians. The network is led by OIF Medical Advisory • Director, Skeletal Dysplasia Council member, Dr. Brendan Lee, at Baylor College of Clinic, Baylor College of Medicine. To learn more about the network, visit our website Medicine, Houston, TX at www.oif.org. • Director, Medical Students Research Track, Baylor College of Medicine, Houston, TX • Co-Director, The Rolanette and Berdon Lawrence Bone Disease Program of Texas, Baylor College of Medicine, Houston, TX 2014 ANNUAL REPORT | 3 MEDICAL ADVISORY COUNCIL (continued) Awareness • Dr. Lee is a Director of the OI n May, the OI Foundation held its fourth national OI Foundation Linked Clinical Awareness Week, involving volunteers across the country Research Center in Houston. I in holding awareness and fundraising events within Cathleen Raggio, M.D. their communities. Awareness Week 2014 took place May http://www.hss.edu/physicians_ 3-10, 2014, and on May 6, 2014, the Foundation officially raggio-cathleen.asp participated in Wishbone Day, an international awareness • Assistant Attending event that helped to raise awareness about OI all over the Orthopaedic Surgeon, Hospital for Special Surgery, world by sharing a fact about OI every hour for 24 hours! We New York, NY proclaimed National OI Awareness Week 2014 in 13 states, received a National OI Awareness Week Resolution from the David Rowe, M.D. http://regenerativemedicine.uchc. House of Representatives, educated over 2,000 participants edu/faculty/bios/rowe.html at 10 OI awareness raising events, displayed over 400 • Director for Regenerative Awareness Week posters and reached OVER 300,500 people Medicine and Skeletal through our National OI Awareness Week social media Development, University of campaign [SHAREforAWARENESS]. Connecticut Health Center, Farmington, CT David Vernick, M.D. http://www.vernickandgopal.com/ our_team.htm • Surgeon in Otolaryngology, Massachusetts Eye and Ear Infirmary, Boston, MA • Surgeon in Otolaryngology, Beth Israel Deaconess Medical Center, Boston, MA • Surgeon in Otolaryngology, Children’s Hospital, Boston, MA • Surgeon in Otolaryngology, Brigham and Women’s Hospital, Boston, MA Deborah Krakow, M.D. http://people.healthsciences. ucla.edu/research/institution/ personnel?personnel_id=45820 Over 500 members of the OI Community attended the opening session of the OIF National Conference in Indianapolis, IN. • Professor in Residence, Orthopaedic Surgery, David Geffen School of Medicine at UCLA, Los Angeles, CA National Conference Frank Rauch, M.D. http://www.chu-sainte-justine. he 2014 OIF National Conference took place August org/research/chercheurs. 1-3 at the JW Marriott in Indianapolis, IN—and what aspx?ID_NOUVEAU=1282104&id_ page=2432&id_menu=2429 T an amazing weekend it was! Throughout the weekend, over 35 experienced speakers shared information and led discussions on over 40 topics carefully selected for those interested in Type 1, Adult, Young Adult and Parent 4 | 2014 ANNUAL REPORT information. Over 500 conference attendees took advantage MEDICAL ADVISORY of the one-on-one medical consultations, age and gender specific forums, informative sessions and enjoyable social COUNCIL (continued) events! New and old friends of all ages participated in the • Director, Biomedical National Unbreakable Spirit® Walk-n-Wheel, Adult Happy Laboratory, Shriners Hospitals Hour, OIF National Conference Talent Show, Cake and Ice for Children, Montreal, Quebec Cream Talent Show After-party, OI Night at the Indianapolis • Pediatrician, Shriners Hospitals for Children, Montreal, Quebec Indians game, Closing Dinner and Dance and more! We look forward to seeing everyone at the 2016 OIF National • Associate Professor, Department of Pediatrics, Conference in Orlando, Florida at the Walt Disney Swan Faculty of Medicine, and Dolphin! McGill University • Dr. Rauch is a Director of the OI Foundation Linked Clinical Research Center in Quebec Hollis Chaney, M.D. http://www.childrensnational. org/findadoctor/profiles/hollis- chaney- 87.aspx • Assistant Professor in Pediatrics, The George Washington University School of Medicine and Health Sciences, Washington, DC • Vice Chair of the Division of Pulmonary

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