New OIFE Member Canada
Interview with Jacinta Whyte,
President and Chair of COIS (Canadian Osteogenesis Imperfecta Society)
The Canadian OI-organization became an associated member organization of OIFE in October 2022 and we are very happy to welcome them to our international OI-community.
Who are you and what is your connection to OI?
My name Is Jacinta Whyte and I am the President and Chair of the Canadian Osteogenesis Imperfecta Society (COIS-SCOI). My 26-year-old daughter Rachel has Type IV OI and has been very lucky to have been a patient of Dr Glorieux and the team at the Shriners Hospital for Children In Montreal since a baby. It was through that association that I was asked to reactivate the COIS. So, I have been working for many years to achieve this goal and we finally re-established the COIS formally with full government registration In 2017.
Tell us about COIS and the situation of people with OI in Canada!
COIS do not operate on a membership model, meaning that we don’t have individual members. The OI population in Canada is still relatively small and we find It difficult to get hard numbers other than the population that the Shriners Hospital cares for, which is in the 700/1000 range. The assumption is that 80% of the OI population are typically more mild to moderate, therefore many go undiagnosed.
The general population in Canada are very fortunate as we have a public health system enshrined in law, so everyone has full access to medical care. For the OI population specifically, our child OI population are really lucky to have the great team at Shriners Hospital in Montreal leading the way in the fields of OI research, care and treatment of the ‘whole person’ in a family centered treatment model. So the whole family gets cared for! Adult OI care is more challenging, and COIS have commenced building a medical and treatment practitioners directory as we find professionals with experience in OI. This has become a top priority for COIS to make adult care more available and accessible.
We are a volunteer organisation and working with our eight board members we are slowly getting the OI Community connected and supported in Canada.
We are lucky to have a close association with the Shriners Hospital In Montreal, Quebec through Dr Francis Glorieux (COIS board member) and through a partnership with the OIF where we can leverage and share their great work. We are now also an OIFE associate member and look forward to building that relationship.
What are your vision and goals?
Our vision is to create one OI community without borders or barriers. Our goals are:
- Awareness – to develop community and broader awareness of OI through targeted communications, ambassadors, digital outreach/website and events. We are also developing and implementing diversity and inclusion strategies to reach marginalized OI communities and people.
- Education – to develop educational and resource materials,
- To support research and academic OI development through the Francis Glorieux Fellowship program and to support medical research grant applications.
- Support – development of regional OI community support hubs, provide lifestyle advice and access to key OI care providers in Canada.
Together with fundraising for our Fellowship Program, our biggest challenge is finding volunteers who have the time to support COIS activities and build out our regional hubs. This is probably our key priority so we can get fully established.
Tell us about your biggest success, projects and plans!
Our biggest success was to get the COIS legally reactivated as a registered charity In Canada, (something we could not have done without the support of our partners at OIF.) We are also pleased to have launched our summer ‘OICAN’ family camp in partnership with a specialized summer wilderness camp provider, so the whole OI family can have summer fun at camp!
Our current major project is to fully launch the Francis Glorieux Medical Research Fellowship to support the development of academic research, skill and capability of young clinicians and physicians who will be contributors to the OI community over the short and longer term.
Our plans are to deliver on our strategic plan to achieve our goals and continue to build out our volunteering and fundraising base to enable many good things to happen! We also wish to connect more actively with other OI-organizations especially OIFE as given the diverse nature of Canada, we need to build a broader diverse community accessing multilingual capability that OIFE brings.