Reflecting on 50 Years – A Letter from Gemma Geisman

To prepare for the OIF’s 50th anniversary, OIF Founder Gemma Geisman wrote a beautiful letter reflecting on the OI Foundation’s accomplishments and activities since 1970. Her daughter, Cathy, shared this letter with the OI community in Gemma’s Corner
Gemma was creative, passionate, and a wonderful listener. She listened to learn about you, she listened to find out how to help you, and she listened because she cared about you.
 
Gemma’s Corner, created in memory of Gemma, encourages the OI community to keep sharing with each other, caring for each other, and providing support to one another.
 
For more information, or to share your story, please contact Jessica at jransome@oif.org.

What A Year!

Dear Friend,

As we near the end of 2020, we are taking a moment to reflect on what has certainly been a historic year. We are thankful for the generosity of individuals like you that allows the OI Foundation to continue providing programs and services that benefit all members of the OI community. We have worked hard to pivot and expand our programs to meet the needs of the OI community during this global crisis and want to share a few of our accomplishments this year. Please click here to view the OIF’s list of accomplishments.

If you have not had the chance to remember us with a gift this time of year, please take a moment to do so at  www.oif.org/donate. Thank you again for your support!

COVID-19 Survey Results

Thank you to the 199 community members who filled out OIF’s COVID-19 survey to help us better understand how the COVID-19 pandemic is affecting families and individuals living with OI. Your responses will help shape future OIF programs.

Important Findings:

  • A large portion of the OI community has become less active. Health advocates believe that “movement is life.” Therefore, the OIF will provide new opportunities to encourage OI-appropriate exercises and activities.
  • The OIF recommends that community members take the flu and Pneumovax vaccines in order to maintain the best possible pulmonary health. Of note, many pharmacies are offering drive-thru vaccine stations. To view locations where you can receive a flu shot in your area, use the Vaccine Finder at www.vaccinefinder.org.
  • Anxiety and/or depression have been a challenge for many individuals during the COVID-19 pandemic. The OI Foundation has held two community calls on this topic, focusing on resiliency and self-care (available at www.oif.org/podcast) as well as sharing numerous resources for addressing the pandemic, and will continue to offer similar events in the future.

To view the full COVID-19 Survey results, click here.


The impact of the pandemic is changing daily. We will be sending a second survey out in early 2021, so, if you missed the first survey, please be sure to enroll for the next one! To complete the survey, you must be a member of the OI Registry

CLICK HERE TO SIGN UP FOR THE OI REGISTRY

 

Join the OI Registry

Individuals with OI (18 and older) and parents of children with OI are encouraged to join the OI Registry. The OI Registry is a database of individuals with OI who are interested in participating in OI research. Once you are enrolled, you will begin to receive information on upcoming studies and online surveys about OI. Your participation in these studies helps move OI research forward.

 

Click here to join the OI Registry

If you have any questions, please contact the OI Foundation at bonelink@oif.org or (844)889-7579.

Final Reminder: Survey Opportunities

Final Reminder: Survey Opportunities for the OI Community

The Osteogenesis Imperfecta Foundation would like to bring your attention to survey opportunities for OI community members.

Orthopedic Patient Survey

A group of orthopedic surgeons with extensive experience in treating OI have come together to learn more about the patient experience. Please take a moment to complete this survey. Your participation will help these OI experts better understand the needs of people living with osteogenesis imperfecta.

Please take 5-10 minutes to complete the survey by Sunday, October 18, 2020.

Complete the Survey


Rare Diseases Clinical Research Network COVID-19 Survey

How are you being impacted by the novel coronavirus pandemic?
Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH’s Rare Diseases Clinical Research Network. Is access to care changing? Can you get needed medical and nutritional supplies? Are stress and anxiety impacting you and your family? Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

Complete the Survey


 

Disclaimer: The OI Foundation is not involved in the design or management of this research, and as such, is neither endorsing nor supporting these surveys. The mission of the OIF is to keep the OI community informed of all relevant studies. This information is made available as a service to the OI community. We are available to answer questions on this or any other research announcement.

Please contact the OI Foundation at (301) 947-0083 or bonelink@oif.org.

OIF Young Investigators Symposium: Call for Abstracts!

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.

Survey Opportunity: Help Orthopedic Surgeons Learn About OI

The OI Foundation would like to bring your attention to a new survey to help orthopedic surgeons learn more about OI.

A group of orthopedic surgeons with extensive experience in treating OI have come together to learn more about the patient experience. Your participation will help these OI experts better understand the needs of people living with osteogenesis imperfecta.

Please take 5-10 minutes to complete the survey at https://www.surveymonkey.com/r/J9653VK.

This survey will be available until Sunday, October 18, 2020.

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.

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.