Apply to be an OI Support Group Leader!

Apply to be an OI Support Group Leader!

Applications are due by August 25, 2023

The OI Foundation recognizes the value of creating a space where members of the OI community can share their personal experiences, and both receive and provide support. For many years, OI Support Groups met in person, but with advancements in technology, some of the groups have chosen to meet virtually in recent years. The OIF is now expanding this important program to ensure that everyone in the US has the opportunity to connect either by geography or by interest. We need your help to make this program successful!

The goal of the OI Support Group Program is to provide space for sharing, educating, and socializing.

  • Sharing allows participants to talk about their experiences and feelings and offer each other mutual support and encouragement.
  • Education occurs when group members receive new information on topics of interest. OI Foundation videos or local speakers can be sources of information. Topics can be related to OI itself or any areas involved in living with OI (e.g., school, recreation, employment, insurance, driving, etc.).
  • Social time provides an unstructured opportunity for members to enjoy each other’s company. Many support groups schedule a special annual event, such as a picnic or holiday party, in addition to the regular meetings.

The OI Support Group Program is divided into five Regional Groups (Northeast, Southeast, Southwest, Midwest, and West) and OI Affinity Groups. With support from OIF staff, each Support Group is led by an OI community member.

Regional Support Group Leaders will receive an annual stipend plus travel to the OIF’s biennial National Conference. Regional Support Group Leaders must live in the geographic area they are looking to support and have experience with OIF programs and services.

Affinity Group Leaders can live anywhere in the world but the OIF can only cover domestic airfare for the National Conference. Hotel and registration fees for internationally based Affinity Group Leaders will be covered. OI Affinity Groups are nationally-based groups of individuals with a shared interest or common identity characteristic. Examples of Affinity Groups include LGBTQIA+, Young Adults, Parents of Children with OI, Accessible Travel, Health and Wellness.


If you have any questions, please email Kenna Coleman at

RAREis Global Advocate Grant

We are so proud to have been awarded a 2023 #RAREisGlobalAdvocateGrant by Horizon Therapeutics RAREis Program which recognizes our contributions to advancing, educating and addressing the needs of the rare disease community. We look forward to continuing to make a meaningful difference for those living with osteogenesis imperfecta (OI).
Click here to learn more about the #RAREis Global Advocate Grant and the other incredible organizations honored.

Welcome to the OIF Board of Directors, Billy!

Billy Huang is a biologist-turned-entrepreneur originally from New York City and a current fellow with the Office of Workforce Strategy. Growing up in a low-income and first-generation household and as a person with a disability, he is passionate about addressing intersectional issues related to poverty, health, and access to economic opportunity. Through his startup, Source Development Hub, Billy has had the opportunity to work with multiple regional and national non-profit organizations, including the Urban Institute and Corporation for Supportive Housing, on projects mapping affordable housing throughout Connecticut.

Most recently, Billy served as the Director of Data Analytics and Impact at the Housing Collective, a regional nonprofit focused on collective impact work spanning the homelessness services and affordable housing sectors. His work there included the development of a Housing Innovation Lab to foster tech-focused interventions aimed at understanding and addressing homelessness and affordable housing. Complementing his professional work, Billy advocates for disability rights at the municipal level by chairing the New Haven Commission on Disabilities and at the national level through the Osteogenesis Imperfecta Foundation. He additionally consults for MIT Solve, a social innovation marketplace, on social impact data modeling.

Billy holds Bachelor’s degrees in biology and history from MIT as well as an MBA from the Yale School of Management. We are excited to welcome Billy as a member of the OIF Board of Directors!

Nominate an OIF Board Member
The OI Foundation is always seeking nominations for new members of the OIF Board of Directors. The Board Development Committee looks for nominees with qualities such as a personal connection to OI and experience in areas including accounting, finance, fundraising, organizational management, public relations, strategic planning, business and/or law. If you or someone you know is committed to achieving the mission of the OI Foundation please contact the OIF at

Members are the Heart of the OI Foundation

Without our members, the OI Foundation could not be the resource the OI community has come to rely on. From funding deserving research projects, to creating support groups, establishing regional and national conferences, and hosting fundraisers, we need your help!

OIF member Jessica Sheridan shared why being a member of the OI Foundation is so important to her and her family in the interview below.

What is your relationship with OI?
My daughter was diagnosed with OI in 2012, 6 weeks after she was born. It was spontaneous, rather than genetic, and at that time we knew no one with OI and had no prior knowledge of what it was. We were put in contact with the OIF, which was a wonderful experience because the resources we were able to utilize and the people we met (both staff and other families) helped us cope and navigate the diagnosis as first-time parents. I wanted to learn more and more about how best to help my child but, in the meantime, I found this network of people who devoted themselves to spread awareness about this rare disease and worked continuously to develop creative ways to raise funds to help the community.

Why is membership in the OI Foundation important to you?
I am constantly amazed by all of the hard work and dedication that goes into all of the events that the OIF community plans, and all of the ways the OIF helps the OI community. At the heart of it all is a dedicated network of people working together to help support those living with OI, which is a cause near to my heart, of course. I have such gratitude for all of the people who care about my daughter. Not to mention, the community is so positive. When you have a loved one with OI it can be difficult, but knowing that there are so many people working together to help and who care is amazing.

Have you ever attended an OIF meeting/ conference/event?
I have yet to attend a conference, but when my daughter was young we planned golf outings in Michigan and Illinois for a few years, which will always hold very special memories to me.

Is there any advice you would give to a new family/member of the OI Community?
When things in life seem unexpected, it can feel very confusing and scary. However, the most difficult parts of life also happen to be the most wonderful opportunities to experience immense love, compassion, and kindness from others. There are so many people to lean on in this community, and people who care and want to help you on this journey we are all traveling together. Don’t feel that you are alone. Reach out to others, don’t be afraid to ask for help and use invaluable resources such as the OIF to help assist you. Go to an event if you can and meet people, or plan an event and watch people come out in droves to show you love and support. There are so many of us out here who are now part of your tribe!

What upcoming OIF program are you most looking forward to and why?
I love hearing about all of the many ways people all over the country are continuously working together to spread awareness. I love the Bone China Tea. I love reading about new grant opportunities and new medical research. It gives me a lot of hope for the future.

The future of the OI Foundation depends on you! We count on the support of our members to help fund research, provide information and support, develop new resources, expand support groups and increase public and professional awareness about OI. Without you, the vision for the OI  Foundation once had by a group of parents in 1970 would not have become the resource it is today. From funding deserving research projects, to creating support groups, establishing regional and national conferences, and hosting fundraisers, you’ve been with us through it all.

Please consider becoming a member of the OI Foundation by visiting

OI Research Update: Abnormal lung function in OI

OI Research Update:

Abnormal lung function in osteogenesis imperfecta due to both intrinsic and extrinsic causes
Gochuico et al. (2023) J Med Genet May 16:jmg-2022-109009. Doi:10.1136/jmg-2022-109009

Lung disease is the major cause of illness and death in individuals with osteogenesis imperfecta (OI), a collagen-related bone fragility disorder. Previously, external factors such as scoliosis and chest wall deformities were considered responsible for abnormal lung function in OI. Prior data from the NIH USA OI Research Program lead by Dr Joan Marini showed that pulmonary function declined with age even in children who did not have scoliosis, suggesting an intrinsic component for OI lung disease (Thiele et al, Human Mol Genet. (2012) 21(16):3535-45), that is, a defect directly in the respiratory system itself.

In this investigation, we studied 37 children and young adults with several types of OI, 29 of whom have structural mutations in type I collagen. Type I collagen is a component of lung parenchyma as well as the major matrix protein of bone. Study participants underwent lung function tests, X-Rays and CTs of lung tissue. Most patients had restrictive lung disease and decreased gas exchange, independent of scoliosis. Analysis of chest scans and breathing tests showed thickening of the walls of small airways and lung tissue abnormalities.  We conclude that OI also causes intrinsic lung disease that negatively impacts Quality of Life (QOL) in OI. Further study of intrinsic lung abnormalities may lead to improved treatment options and improve QOL.

Click here to view the full article.

Congratulations to the first-year recipients of the Edward D. Cranston College Scholarship!

The OI Foundation is excited to announce the first-year recipients of the Edward D. Cranston College Scholarship: Eden Nadler and Ethan Yamashita!
This scholarship, created in honor of Edward D. Cranston, is for students with OI who are applying to or have been admitted to a college or university. Edward, who was born in 1962 with severe OI, challenged himself by pursuing all educational opportunities available to him to achieve his goal of working as a health care professional. He dedicated his career to working with children with complex respiratory conditions and is held in high regard both by professionals in the field, as well as the families of the many children with whom he has worked.
Eden and Ethan were selected from nearly 20 applicants. Eden will be attending the University of Central Florida, and Ethan will be attending Brigham Young University. We are grateful to our review committee for taking the time to learn about each applicant, and we are proud to support this year’s recipients as they move forward in their education!