OI Community Call: Mental Health during COVID-19

On Thursday, September 3, 2020, Dr. Kara Ayers (Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities) and Dr. Michelle Fynan (Online Instructor at LA Film School, Online Coach and Therapist) joined fellow OI community members on a video call to discuss mental health considerations during the COVID-19 pandemic.

Reflecting on 50 Years

Read a special message from OI Foundation CEO Tracy Hart highlighting the OIF’s milestones and accomplishments over the past 50 years below.

Dear Friend,

Hooray! The OI Foundation is celebrating its 50th anniversary this August! As we look back over the past 50 years of service to the OI community, we can’t help but marvel at all that has been accomplished to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness, and mutual support.

Since the OI Foundation’s official date of incorporation, August 21, 1970, the OI Foundation’s funding for research has doubled every five years. The Michael Geisman research grant (named after the son of OI Foundation founder Gemma Geisman) encourages new investigators to begin a career in OI research by offering postdoctoral fellowships and seed grants for preliminary research. To date, the OIF has funded 22 Geisman Fellows to advance the pace of OI research. Funding also supports the OI Registry a database maintained by the OIF that helps shape research studies created by the Brittle Bones Disorders Consortium, a multicenter program that focuses on understanding and providing better treatment options for all types of osteogenesis imperfecta.

Educating individuals, family members, and healthcare providers is an integral part of the OI Foundation. Starting in 1981, the OI Foundation has hosted 20 National Conferences, 13 Regional Conferences and our first-ever Virtual Conference. Each OIF Conference brings together hundreds of individuals to learn the latest information about OI from expert medical professionals and share their own experiences. During the two-day Virtual Conference held on July 11-12, 2020, more than 800 individuals signed on to participate in sessions ranging from Basics of OI, to Solutions for Pain & Fatigue, and Surgical Treatments for Adults & Children with OI.

In addition to educating individuals directly affected by OI, the OI Foundation is dedicated to educating medical professionals so that more practitioners across the world have an increased awareness and knowledge of OI. To that end, the OIF will be launching the first OI focused TeleECHO series later this year. This virtual continuing medical education platform will increase access to expert medical knowledge for participating physicians and medical professionals.

This program will connect practitioners across the globe with monthly sessions that will include brief presentations and real-world case presentations focused solely on osteogenesis imperfecta.

At its core, the OI Foundation was founded based on a need for mutual support. What started in 1970 as a small group of parents from across the country has now spread to a network that is growing by the day. The OI Foundation maintains support groups in 26 states; a monthly e-newsletter that reaches 9,000 people; a physical newsletter, Breakthrough, which reaches 1,200 individuals; the OIF Facebook Page – followed by 13,390 users; the OIF Twitter account – followed by 2,557 users; and a national information center that provides medically-verified answers to more than 11,000 individuals every year. The OI Foundation has also partnered with several international OI organizations including COIS in Canada, the Brittle Bone Society in the United Kingdom, OIFE in Europe, and Care 4 Brittle Bones in the Netherlands.

We have come so far-but we need your help! Join us in celebrating the 50th anniversary of the OI Foundation and kicking-off the start of the next 50 years! Please visit www.oif.org/donate to make a donation today. As a special way to celebrate the OI Foundation’s 50th anniversary, we recently created a special giving circle – The 1970 Society – in recognition of the OI Foundation’s inaugural year. Members who give at least $1,000 in 2020 will become part of this exclusive circle. You can make your donation in a single pledge or in installments over ten months. You can also dedicate your $1,000 gift in honor or in memory of a loved one. As a 1970 Society member, you will receive a limited edition OIF 50th anniversary lapel pin, a limited edition 50th anniversary bear, and a special acknowledgment in the OIF annual report and on the OI Foundation’s website www.oif.org.
Thank you for your ongoing support of the OI Foundation!

Tracy Hart
Chief Executive Officer

 

OI Foundation PCOR Project Approved for Supplemental Funding Award

OI Foundation Project, Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community, Approved for Supplemental Funding Award

The Osteogenesis Imperfecta Foundation is excited to announce that supplemental funding has been approved for the Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community project to include investigating the impact of the COVID-19 pandemic on the osteogenesis imperfecta community. This important project advances the collaboration of the OI Foundation (Tracy Hart, CEO, Lead) and Co-Leads Dr. Laura Tosi, Director, Bone Health Program, Children’s National Hospital and Dr. Bryce Reeve, Director, Center for Health Measurement, Duke University. The goals of the supplemental funding award are to assist the rare bone disease community in developing COVID-19 content and outreach, expand the OI PCOR toolkit to include COVID-19-specific resources, expand OI clinic outreach to disseminate content on COVID-19, and create and disseminate OI-relevant COVID-19 content.

Click here to learn more.

Celebrating 50 Years!

The OI Foundation was officially incorporated on August 21, 1970! We will be celebrating the OIF’s 50th Anniversary on our website and social media pages all week long! Make sure you check out the OIF website, and are following the OIF on Facebook, Twitter, and Instagram to share our #OIF50 posts! Each day, we will share highlights from a decade of the OI Foundation’s history on OI Foundation social media pages – please be sure to LIKE and SHARE! – https://mailchi.mp/oif/50years

OIF Young Investigators Symposium

OIF Young Investigators Symposium
Basic, Translational and Clinical Aspects of Osteogenesis Imperfecta and Other Rare Bone Disorders

The Osteogenesis Imperfecta Foundation (OIF) is seeking abstract submissions from young investigators working in the field of osteogenesis imperfecta (OI) and/or rare bone disease research to be presented at the 2020 OIF Young Investigator Symposium on Tuesday, November 17 from 5pm-8pm EST.

This virtual one-day meeting is being offered as a pre-meeting event for the 2020 International Conference on Children’s Bone Health’s Virtual Forum and is open to US and international participants. Investigators are welcome to submit abstracts to both meetings. Submissions for the Young Investigator Symposium will be reviewed by a scientific review committee and selected abstracts will be invited to present a 10-15 minute overview of their work with 5 minutes for questions from the audience. Investigators are encouraged to share novel findings.
For more information about the ICCBH Virtual Forum visit www.iccbh.org.


Date of Meeting: November 17, 2020 from 5pm-8pm EST

Deadline for Submission: October 1, 2020

To Apply: Click here for Abstract Submission Form or contact Erika Carter at ecarter@oif.org

To Attend: Click here to register to attend. Registration to attend the meeting is free of charge. 


ELIGIBILITY

  • Must be a medical or graduate student
    • OR post-doctoral fellow
    • OR young faculty within 10 years of last graduate degree
  • Areas of research include, but are not limited to: Osteogenesis imperfecta, Paget’s disease of bone, Generalized Arterial Calcification of Infancy (GACI), Hypophosphatemia, Autosomal Recessive Hypophosphatemic Rickets (ARHR2), Osteopetrosis, Fibrodysplasia Ossificans Progressiva (FOP), Fibrous Dysplasia and McCune Albright Syndrome, Hypophosphatasia (HPP), Gorham-Stout Disease, Melorheostosis, Jansen’s disease, X-Linked Hypophosphatemia (XLH), Multiple Hereditary Exostoses (MHE), and Multicentric Carpotarsal Osteolysis Syndrome (MCTO)

The OI Foundation is committed to supporting research to help improve the quality of life for people living with OI. This often times includes engaging groups throughout the rare bone disease community, such as the Rare Bone Disease Alliance (www.rbdalliance.org). The OI Foundation is pleased to open this meeting to the entire rare bone disease research community.

Remembering Gemma Geisman

“Hope lies in dreams, in imagination and in the courage of those who dare to make dreams into reality.” —Jonas Salk

OI mom Gemma Geisman, with the help of a small group of parents, made it her mission to bring information and support to families with OI. Gemma was involved in publishing the first issue of the OIF Breakthrough Newsletter, creating the first brochure about OI, establishing the OI support group network, organizing the first OIF National and Regional Conferences, and so much more.

This week is the 50th anniversary of the OI Foundation’s official incorporation. The OI Foundation would not be here today without Gemma’s dream to bring information and support to families with OI. We owe a very special thank you to Gemma for her dedication to the OI community for more than fifty years. Learn more about Gemma and the OI Foundation’s 50th anniversary at www.oif.org/50years.

It’s not too late to support your favorite Walk-n-Wheel participant!

Thank you so much to everyone who participated in the first-ever Virtual Unbreakable Spirit® Walk-n-Wheel!

Across the United States, Canada, and even as far as Uganda, people came together virtually to support the OI Foundation and raise OI awareness. Together we raised over $60,000 to support the OIF’s mission to improve the quality of life for those living with OI through research, education, awareness, and mutual support. Thank you to our wonderful co-chairs Mark Birdwhistell, Stephanie Greenwood, and Dr. Maegen Wallace for making this event such a success. To watch the recorded Walk-n-Wheel Zoom call, please visit the OIF Facebook page.

It’s not too late to make a donation to the Virtual Walk-n-Wheel! Click here to make a donation to in honor of your favorite participant.

We can’t wait to walk and wheel with you in person next year at the OIF National Conference in Omaha, NE on July 8, 2021!

Rare Bone Disease TeleECHO Program: Year 2 Begins Thursday

Rare Bone Disease TeleECHO Clinic Series: Year 2

The Osteogenesis Imperfecta Foundation and the Rare Bone Disease Alliance are excited to announce the Rare Bone Disease TeleECHO Clinic Series. The goal of this educational program, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes), is to build capacity to safely and effectively diagnose and treat rare bone diseases and disorders.This series uses Zoom videoconferencing, and will take place on the first Thursday of every month at 3pm EST. In each monthly session, faculty members or guest speakers will present a brief didactic presentation, followed by participant-led case presentations and group discussion of the presented cases. The faculty encourages participants to present case studies related to rare bone diseases at each session.

The interdisciplinary faculty in the Rare Bone Disease TeleECHO includes:

Michael Collins, MD National Institutes of Health, NIDCR
Michael Lewiecki, MD University of New Mexico
Eric Rush, MD University of Kansas Hospital
Jay Shapiro, MD Uniformed Services University of Health Sciences
Dolores Shoback, MD University of California San Francisco
Laura Tosi, MD Children’s National Health System

In support of improving patient care, Project ECHO® is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

Project ECHO® designates this live activity for a maximum of 1.0 AMA PRA Category 1 CreditsTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

 

PROGRAM SCHEDULE

August 6, 2020; 3:00pm EST

Melorheostosis: The Genes Behind the Dripping Candle Wax
Timothy Bhattachyrra, MD  Orthopaedic Surgery, NIAMS/NIH


September 3, 2020; 3:00pm EST

Evaluation of Patients with Hyperphosphatemia
Michael Collins, MD Senior Investigator, Skeletal Disorders and Mineral Homeostasis Section, National Institute of Dental and Craniofacial Research/NIH


October 1, 2020; 3:00pm EST

Mechanisms of Bone Loss in Complex Lymphatic Anomalies
Michael Kelly, MD, PhD Professor of Pediatrics, Northeast Ohio Medical University


November 5, 2020; 3:00pm EST

Dental Concerns in Patients with Rare Bone Disorders
Tim Wright, DDS, MS Bawden Distinguished Professor, Division of Pediatrics and Public Health, Adams School of Dentistry, University of North Carolina


December 3, 2020; 3:00pm EST

Generalized Arterial Calcification of Infancy (GACI)
Carlos Ferreira, MD ChiefSkeletal Genomics Unit, National Human Genome Research Institute, NIH


January 7, 2021; 3:00pm EST

Skeletal Surveys – A Systematic Approach
Dorothy Bulas, MD Chief, Department of Radiology, Children’s National Hospital; Professor of Pediatrics and Radiology, George Washington University School of Medicine


February 4, 2021; 3:00pm EST

Jansen’s Disease
Harald Jueppner, MD Chief, Pediatric Nephrology, Massachusetts General Hospital; Professor of Pediatrics, Harvard Medical School


March 4, 2021; 3:00pm EST

Bone Pain in Children
Alison Boyce, MD Associate Research Physician, National Institute of Dental and Craniofacial Research, NIH


April 1, 2021; 3:00pm EST

Multiple Hereditary Exostoses
David S. Feldman, MD Co-Director, Multiple Hereditary Exostoses Center, St. Mary’s Medical Center, West Palm Beach, FL


May 6, 2021; 3:00pm EST

DXA Evaluation in the Child
Catherine Gordon, MD Adolescent Chief, Boston Children’s Hospital; Robert P. Masland, Jr. Chair of Adolescent Medicine, Professor of Pediatrics, Harvard Medical School


June 3, 2021; 3:00pm EST

Adult Hypophosphatasia
Kathryn Dahir, MD Professor of Medicine, Vanderbilt University Medical Center 


July 1, 2021; 3:00pm EST

Evaluation of the Child with Multiple Fractures
Eric. T. Rush, MD, FAAP, FACMG Clinical Geneticist, Children’s Mercy Kansas City; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Associate Professor of Medicine, University of Kansas School of Medicine

If you have any questions, please contact Michael Stewart at Mstewart@oif.org.