2019 ANNUAL REPORT ® Living W ell with an Unbreakable Spirit ® Board of A Message From Directors the President PRESIDENT Hi everyone, Cameron R. Penn, Manhattan Beach, CA My name is Cameron Penn. I became board president for the OI Foundation in VICE PRESIDENT July 2019 but this is the first opportunity Mason, OH Kara B. Ayers, PhD, I’ve had to speak to all of you. It’s an honor to follow two stewards who TREASURER Ted Trahan, Shoreview, MN effortlessly steered the foundation for several years. I’d like to thank Ken Gudek SECRETARY and Mark Birdwhistell for their selflessness, Christine Wyman Rossi, their remarkable consistency and their Framingham, MA extraordinary dedication. But I would be selling their leadership just a bit short if I didn’t recognize their MEDICAL ADVISORY families and especially their wives, Teresa Gudek and Martha COUNCIL CHAIR Birdwhistell. While Ken and Mark were the faces of the board, Francis Glorieux, OC, MD, PhD, Shriners Hospitals for peel back the curtain and you quickly realize their indelible Children - Canada impact wouldn’t have been possible without incredible support. Montreal, QC, Canada As we begin to celebrate a half-century of the OIF’s commitment MEMBERS to all the deserving members of our community, we’re not Michele Burka, MBA, Tamarac, FL only reflecting on our history, we’re envisioning what’s next for James E. Early, Bedford, NH all of us. Given the current global uncertainty, it has become Brett L. Eisenberg, Bronx, NY increasingly apparent that no year in the storied history of the Kenneth D. Finkel, Indianapolis, IN OIF may have a greater, broader impact than 2020. Eric Gould, Miami Beach, FL Joe Hall, Columbia, SC Right now, we’re generously supporting the brightest minds Sharon Mutnick, MBA, Atlanta, GA and biggest hearts in research, we’re expanding fundraising Washington, DC Laura Tosi, MD, platforms and we’re constantly improving our outreach, through Children’s National Medical Center social media and by adding more regional conferences in new cities all over the country. Grants have grown. Membership has S. Jacinta Whyte, Toronto, ON grown. The number of researchers funded has grown, Corporate sponsorships for the national conference have grown. And the overall investment in our community has grown. In short, we’re doing everything we can to invest even more in you. The mission of the But nothing we do exists in a vacuum. In this critical year, we’re asking each of you to take an active part in the direction and OI Foundation is to future of the OI community, starting with our pivotal PCOR improve the quality of Project. Patient Centered Outcomes Research is designed with life for those living with every member of the OI community in mind and it’s directed by osteogenesis imperfecta Dr. Laura Tosi, our CEO Tracy Hart and our steering committee through research, leads, Michelle Duprey and Mark Birdwhistell. The goals of education, awareness and the OIF PCOR Project are simple: 1.) We want to create an mutual support. 2 | 2019 ANNUAL REPORT environment where you can better understand treatment options; and maybe most importantly, 2.) We want to empower Medical each and every one of you with a bigger, more influential role in your own care. Advisory To make this dream a reality, we not only want your voice, we need to hear from you. Share your story with us, share your Council thoughts and opinions. The quickest and easiest way is to Francis Glorieux, OC, MD, PhD - join the OIF Registry. Go to oif.org/PCOR. It only takes a few Chairman minutes. You can also follow us on Facebook and Instagram • Canadian Shriners Hospitals for Children, Shriners Hospitals for @OIFoundation. Children, Montreal, Quebec and McGill University in Montreal In return, we’ll make this promise to you: we’ll do the exact • Principal Investigator, Brittle Bone same thing. The information you share with us is invaluable Disorders Consortium site in to our researchers and medical professionals. And when they Montreal, Qc, Canada make discoveries, when new trends appear—you will be the first • Principal Investigator on the to know. We know research can sometimes seem like a black landmark 1998 study on using bisphosphonates to treat hole: you share your vital, personal information and no one ever children with OI; author of the OI explains why, how or if it helps. We’re changing all that, and Foundation booklet, Guide to OI we’re changing it quickly. for Pediatricians and Primary Care Physicians, and senior editor of So, as the 50th Anniversary of the OIF gets in full swing, I want Pediatric Bone: Biology & Diseases to extend my heartfelt thanks to each of you for your continued Peter Byers, MD support of each other. You never cease to amaze us. We on the • University of Washington School of Medicine, and University of board also owe a sizable debt of gratitude to our entire OIF Washington School of Dentistry, staff, our researchers and medical professionals, fundraisers Seattle, WA big and small, and everyone else who supports our mission in • Genetic Medicine Clinic, University countless ways. of Washington Medical Center, Seattle, WA As we begin to navigate this rest of this unpredictable year and • Recipient of March of Dimes/ rapidly-changing world, I want each of you to know that we will Colonel Harland Sanders Award for lifetime achievement in the field of continue our unbroken commitment to each of you. genetic sciences Warmest regards, Hollis Chaney, MD • The George Washington University School of Medicine and Health Sciences, Washington, DC • Children’s National Health System, Washington, DC, as Vice Chair of the Division of Pulmonary Medicine Cameron Penn Paul Esposito, MD OIF Board President • Clinical Service Chief, Pediatric #MeMyselfAndOI Orthopedic Surgery Surgeon, Children’s Hospital and Medical Center, Omaha, NE • Professor of Orthopaedic Surgery and Pediatrics, University of NE Medical Center, Omaha, NE • Co-Director for The OI Clinic at Children’s Hospital and Medical Center in Omaha 2019 ANNUAL REPORT | 3 MEDICAL ADVISORY COUNCIL (continued) Deborah Krakow, MD • 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 • Principal Investigator, Brittle Bone Disorders Consortium site in Los Angeles, CA Richard W. Kruse, DO, MBA • Professor of Orthopaedic Surgery Thomas Jefferson University College of Medicine in Philadelphia, PA and the Uniformed Services University School of Medicine in Bethesda, MD • Vice Chair Department of Orthopedics and Chief of the Orthopedic Trauma Service at Awareness and Education Nemours/Alfred I. duPont Hospital for Children in Wilmington, DE In September 2019, the OI Foundation launched its newly • Co-Director for the redesigned website which allows users to more easily access multidisciplinary OI program at Nemours/Alfred I. duPont Hospital and share information. As the only voluntary national health for Children in Wilmington, DE organization dedicated to supporting families living with OI, Brendan Lee, MD, PhD it is our goal to provide information in an easily accessible • Baylor College of Medicine, format for OI community members, medical professionals, Houston, TX and caregivers. The OIF website receives an average of • Principal Investigator, Brittle Bone Disorders Consortium 27,000 unique visitors each month. • Dr. Lee is an elected member of the National Academy of Medicine With the help of OI community members across the nation, National OI Awareness Week 2019 was officially proclaimed Joan Marini, MD, PhD • Chief, Bone and Extracellular in 16 states across the United States and the OI Foundation’s Matrix Branch, National Institute #SHAREforAWARENESS posts reached over 200,000 of Child Health and Human Development (NICHD), National people on Facebook. Throughout the week, more than 60 Institutes of Health, Bethesda, MD OI community members created Facebook fundraisers to • Director of Translational Research raise more than $9,000 in support of the OI Foundation. The Program on OI at NICHD next National OI Awareness Week will take place May 2-9, • Principal Investigator, NICHD Pediatric Research Program 2020. National OI Awareness Week is scheduled annually • Twice awarded the National around Wishbone Day (May 6th) – the international day for Institutes of Health Director’s OI awareness. Award for her research on OI 4 | 2019 ANNUAL REPORT MEDICAL ADVISORY OIF Annual Scientific COUNCIL (continued) Meeting Cathleen Raggio, MD • Hospital for Special Surgery, On April 10-12, 2019, the OI Foundation gathered over New York, NY, Orthopedic Surgeon 77 researchers, clinicians, and medical professionals at • Co-Director of the Kathryn O. the 19th Annual OIF Science Meeting in Chicago, IL. and Alan C. Greenberg Center for Skeletal Dysplasias Co-chaired by Dr. Joan Marini and Dr. Cathleen Raggio, • Principal Investigator, Brittle Bone this important meeting hosted speakers and attendees Disorders Consortium site in from the National Institutes of Health (NIH), the Brittle Bone New York, NY Disorders Consortium (BBDC) sites, and many other centers Frank Rauch, MD and labs from across the continent. Speakers presented • Canadian Shriners Hospitals for Children, and McGill University data on topics ranging from the Effect of Rapamycin on Faculty of Medicine, Montreal, Bone Mass and Strength in Amish Mice to an Update on Quebec, Canada treatment of adults with OI. The OI Foundation thanks Dr. • Director, Biomedical Laboratory, Marini