After careful consideration, the OIF’s Board of Directors and OIF Staff have postponed this summer’s OIF National Conference. Although we are disappointed that we will not be able to come together this summer, the health and safety of the OI community comes first. The next in-person OIF National Conference will be held on July 8-11, 2021 at the Hilton Omaha in Omaha, Nebraska.

OIF VIRTUAL CONFERENCE 2020 
In place of the in-person OIF National Conference this year, we will host a Virtual Conference on July 10-12, 2020. The OIF Virtual Conference will provide live online versions of some of the most popular informational and social sessions at the biennial OIF National Conference. This online program is free of charge for all OI community members. Check out the schedule below!

You must register for each session you would like to attend.

Click on the session titles below to register for each session. A confirmation email, including details on how to join the meeting, will be sent to you for each session you register for.

SPEAKERS AND SESSION DESCRIPTIONS ARE LISTED BELOW THE SCHEDULE
FRIDAY, JULY 10
7:00pm ET Virtual OIF Walk-n-Wheel
SATURDAY, JULY 11
10:30am-12:00pm ET  Basics of OI and Genetics Overview
12:15-1:45pm ET Welcome Session and Research Update
Sponsored by Children’s Hospital and Medical Center; Omaha, NE
2:00-4:00pm ET  Pediatric Panel ; Managing Pediatric Health Issues
Sponsored by Children’s Hospital and Medical Center; Omaha, NE
2:00-4:00pm ET Adult Panel ; Managing Adult Health Issues
4:00-5:00pm ET  Parents Meet and Greet
Sponsored by Shriners Hospitals for Children – Canada
 7:30-9:30pm ET  Adults Social Hour 
SUNDAY, JULY 12
11:00-1:00pm ET  Pain/Fatigue; Managing Chronic Pain and Fatigue for Children and Adults with OI
1:00 – 2:30pm ET Mild OI Forum 
1:15-2:45pm ET Surgical Panel for Children/Adults with OI
Sponsored by Pega Medical
3:00-5:00pm ET  Youth Forum
Discussion group for young adults with OI, ages 16 and older
3:00-5:00pm ET  Women’s Health Session;  Managing Health Issues for Women with OI
3:30-5:00pm ET  Dental Session; Orthodontia, Malocclusions, and Implants
5:30pm ET Closing Session

Informational Virtual OIF Conference sessions will be live captioned.

Scroll down to learn more about each session, including a description and confirmed speakers.

Questions? Please contact the OI Foundation at bonelink@oif.org or (844)889-7579

Click the Session Titles Below to Learn More

This session is an introduction to osteogenesis imperfecta for individuals and families with a new diagnosis, and for those who want a refresher on the basic facts about OI, including information on genetics.

Speakers:

  • Joan Marini, MD, PhD – Chief, Bone and Extracellular Matrix Branch, National Institute of Child Health and Human Development (NICHD), National Institutes of Health, Bethesda, MD; Director of Translational Research Program on OI at NICHD; Principal Investigator, NICHD Pediatric Research Program *OIF Medical Advisory Council Member

The opening session welcomes community members and speakers to the 2020 OIF Virtual conference. OIF Medical Advisory Council member and Brittle Bone Disorders Consortium Principal Investigator Dr. Brendan Lee will present an OI research update.

Speakers:

  • Francis Glorieux, OC, MD, PhD –Emeritus Director of Research at the Shriners Hospital for Children (Montreal, Quebec); Emeritus Professor of Surgery, Pediatrics and Human Genetics at McGill University; Principal Investigator of the Brittle Bone Disorders Consortium site in Montreal, QC, Canada; *Chairman of OIF Medical Advisory Council
  • Tracy Hart, CEO – Chief Executive Officer of the Osteogenesis Imperfecta Foundation; Co-Chair of the Rare Bone Disease Alliance; active participant on behalf of the OIF in the Brittle Bone Disorders Consortium.
  • Brendan Lee, MD, PhD – Robert and Janice McNair Endowed Chair in Molecular and Human Genetics, Professor and Chairman of the Department of Molecular and Human Genetics at Baylor College of Medicine (BCM); Pediatrician and Geneticist at Baylor College of Medicine; Principal Investigator of the Brittle Bone Disorders Consortium. *OIF Medical Advisory Council Member
  • Cameron Penn – President of the OIF Board of Directors
  • Laura Tosi, MD – Director of the Bone Health Program at Children’s National Hospital; Associate Professor of Orthopedics and Pediatrics at George Washington University *OIF Medical Advisory Council Member
  • Maegen Wallace, MD – Pediatric Orthopedic Surgeon for the OI Clinic at Children’s Hospital and Medical Center in Omaha, NE.

Sponsored by Children’s Hospital & Medical Center (Omaha, NE)

Pediatric physician panel members will present an overview of general medical issues including: navigating surgery, bone, muscle and joint health, the role of pharmacologic treatments, and more.

Speakers

  • Suken A. Shah, MD Division Chief of the Spine and Scoliosis Service and Clinical Fellowship Director; Pediatric Orthopaedic Surgeon at the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware
  • Maegen Wallace, MD – Pediatric Orthopedic Surgeon for the OI Clinic at Children’s Hospital and Medical Center in Omaha, NE.
  • Beth Jacks, MS, PT – Pediatric Physical Therapist for over 25 years practicing in a variety of setting including hospitals, schools, outpatient centers and as the owner of her own private practice.  Beth has developed expertise with children diagnosed with osteogenesis imperfecta.
  • Reid Sutton, MD – Professor of Molecular & Human Genetics at Baylor College of Medicine & Texas Children’s Hospital in Houston, TX *OIF Medical Advisory Council Member
  • Hollis Chaney, MD – Vice Chair of the Division of Pulmonary Medicine, Children’s National Health System, Washington, DC. *OIF Medical Advisory Council Member

Physician panel members who have clinical experience treating adults living with OI will present an overview of general medical issues. The panel will address quality of life issues for adults living with OI.

Speakers:

  • Kara Ayers, PhD – Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities
  • Sandesh C.S. Nagamani, MD – Director of Baylor College of Medicine’s Clinic for Metabolic and Genetic Disorders of Bone; Associate Professor in the Departments of Molecular and Human Genetics and Internal Medicine at Baylor College of Medicine. *OIF Medical Advisory Council Member
  • Mahim Jain, MD, PhD – Director, Department of Bone and OI, Kennedy Krieger Institute; Assistant Professor, Department of Pediatrics, Johns Hopkins Medical Institute
  • Deborah Krakow, MD – Professor and Chair, Obstetrics and Gynecology, UCLA, David Geffen School of Medicine, Los Angeles, CA; Principal Investigator, Brittle Bone Disorders Consortium site in Los Angeles, CA *OIF Medical Advisory Council Member
  • Cathleen Raggio, MD – Orthopedist and Co-Director of the Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias at Hospital for Special Surgery. *OIF Medical Advisory Council Member
  • Sandy Sandhaus, MD, PhD – Pulmonologist at National Jewish Health in Denver, CO. *OIF Medical Advisory Council Member

Sponsored by Shriners Hospital for Children; Montreal, Canada

The parents meet and greet provides all parents with an opportunity to get together to socialize and discuss strategies they use to support their children.

This time is for adults with OI to enjoy each other’s company and to have some fun. This two-hour social hour will include a group trivia game. (Intended audience is 18+.)

Physician speakers will present information and strategies for managing chronic and acute pain and fatigue.

Speakers:

  • Mark Popenhagen PsyD, ABPP – Pediatric Psychologist at Phoenix Children’s Hospital
  • Mahim Jain, MD, PhD – Director, Department of Bone and OI, Kennedy Krieger Institute; Assistant Professor, Department of Pediatrics, Johns Hopkins Medical Institute
  • Jessica K. Goeller, DO – Medical Director, Acute Pain Service, Children’s Hospital and Medical Center Omaha, NE; Board Certified Pediatric Anesthesiologist; Associate Professor, Anesthesiology, UNMC
  • Christopher Joseph, MSPT – Director of Physical Therapy, Kennedy Krieger Institute
  • Daniel Raphael Aaron Sova, MD – Assistant Professor of Physical Medicine and Rehabilitatio, Johns Hopkins Medicine

This forum will discuss topics specific to mild OI including: maximizing bone strength and functional joint health, pulmonary health, hearing loss, and daily living with mild OI.

Speakers:

  • Emily L. Germain-Lee, MD – Professor, Department of Pediatrics, University of Connecticut School of Medicine; Chief, Division of Pediatric Endocrinology & Diabetes, Connecticut Children’s ; Director, Center for Rare Bone Disorders; Co-Director, OI Center
  • Peter Smith, MD – Orthopaedic Surgeon and Director of the Osteogenesis Imperfecta Clinic at Shriners Hospitals for Children — Chicago *OIF Medical Advisory Council Member
  • Reid Sutton, MD – Professor of Molecular & Human Genetics at Baylor College of Medicine & Texas Children’s Hospital in Houston, TX *OIF Medical Advisory Council Member
  • David M. Vernick, MD, FACS – Surgeon in Otolaryngology at Massachusetts Eye and Ear Infirmary, Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital, and Children’s Hospital, Boston, MA *OIF Medical Advisory Council Member
  • Eric S. Orwoll, MD Professor of Medicine, Division of Endocrinology, Diabetes and Clinical Nutrition, School of Medicine, Oregon Health & Science University

Sponsored by Pega Medical

This session is designed to provide information about navigating surgery with OI. Physician speakers will present information on topics such as rodding surgery and pre- and post op considerations.

Speakers:

  • Richard W. Kruse, DO, MBA – Division Chief of the Orthopedic Trauma Service; pediatric orthopedic surgeon at the Nemours/Alfred I. duPont Hospital for Children; staff member of the Medical Center of Delaware and Director of the multidisciplinary Osteogenesis Imperfecta Program. *OIF Medical Advisory Council Member
  • Paul Esposito, MD – Clinical Service Chief, Pediatric Orthopedic Surgery Surgeon, Children’s Hospital and Medical Center, Omaha, NE; Co-Director for The OI Clinic at Children’s Hospital and Medical Center in Omaha. *OIF Medical Advisory Council Member
  • Jeanne Franzone, MD – Pediatric Orthopedist Surgeon at Nemours/A.I. duPont Hospital for Children, Wilmington, DE.
  • Peter Smith, MD – Orthopaedic Surgeon and Director of the Osteogenesis Imperfecta Clinic at Shriners Hospitals for Children — Chicago *OIF Medical Advisory Council Member
  • Laura Tosi, MD – Director of the Bone Health Program at Children’s National Hospital; Associate Professor of Orthopedics and Pediatrics at George Washington University *OIF Medical Advisory Council Member
  • Maegen Wallace, MD – Pediatric Orthopedic Surgeon for the OI Clinic at Children’s Hospital and Medical Center in Omaha, NE.

This forum will discuss topics specifically for young people who have OI such as maintaining support systems, developing stress management techniques, and school.

This session is designed specifically for women over 18 who have OI.

Speakers:

  • Deborah Krakow, MD – Professor and Chair, Obstetrics and Gynecology, UCLA, David Geffen School of Medicine, Los Angeles, CA; Principal Investigator, Brittle Bone Disorders Consortium site in Los Angeles, CA *OIF Medical Advisory Council Member

This session will provide information about a range of dental issues in individuals with OI. Speakers will cover the dental management and treatment considerations for children and adults with all types of OI.

Speakers:

  • Jean-Marc Retrouvey, DMD, MSc, FRCD – Leo Rogers Endowed Chair, Department of Orthodontics Faculty of Dentistry, University of Missouri, Kansas City; Adjunct Professor, McGill University, Montreal Canada; Honorary Professor, HO Chi Minh City University; Director of the Orthodontic Division at McGill University in Montreal, QC, Canada
  • Kevin Ricker, DDS, MS – Pediatric Dentist at Chatham Pediatric Dentistry in Chapel Hill, NC.
  • Joseph A. Napoli, MD, DDS – Associate Professor of Clinical Surgery, University of Pennsylvania; Division of Plastic Surgery, Children’s Hospital of Philadelphia

Let’s come together to celebrate the end of the first-ever OIF virtual conference! Don’t miss the announcement of the 2022 OIF National Conference location.

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