Events
Walk N Wheel 2024
Calling all Canadians! It’s your chance to support COIS, with our COIS-SCOI Walk N Wheel 2024. Our Walk N Wheel coincides with the 2024 National OIF Conference, in Omaha, Nebraska, to which we are a proud sponsor. Now is the time to register your Walk N Wheel team, and raise awareness and funds for the Canadian Osteogenesis Imperfecta Society (COIS)
How do I participate?
Email info@cois-scoi.ca with your team name and team leaders email address. COIS will then email you a link to your team page, where you can customize it with a personal story, photos, and your personal fundraising goal.
Share your fundraising page via email and social media with your friends and family, then join us on Friday, July 19th in Omaha, Nebraska for our in person Walk N Wheel. If you can’t attend this year‘s in person event, don’t worry, you can still participate. Simply do your walk or wheel around your own neighborhood or park, wearing your favourite COIS or OI awareness T-shirt. Don’t forget to tag COIS in your photos and videos.
As an extra incentive, for every $1300 a team raises, they will receive 1 free registration to the OIF National Conference 2024, in Omaha, Nebraska
Thanks to our generous donors in 2022, COIS launched 2 major initiatives;
The Francis Glorieux Fellowship For Medical Research. Ensuring sustainable excellence in ongoing research, treatment and management of OI.
OI Can Family Camp. A partnership with Camp Maple Lead, to create the very first OI Family Camp in Canada. Providing financial assistance to qualifying families wishing to attend summer camp. We hope to expand Camp OI Can to Eastern and Western Canada, stay tuned!
Email info@cois-scoi to register your team today!
COIS is a registered Canadian charity. All donations over $20 will receive a charitable donation tax receipt
CRA #11883 4928 RR0001
OIF National Conference
Join us for the Osteogenesis Imperfecta Foundation (OI) National Conference on July 19-21, 2024!
More than 600 members of the OI community will come together for three days of specialized sessions on managing OI, free medical consultations, and fun social events for attendees of all ages! The entire conference will take place at the Hilton Omaha in Omaha, NE.
For more information, and to register click here: https://oif.org/conference2024/
CAMP OI CAN
The day has arrived!! Family camp registration is officially open! 🏕️ Don’t miss this opportunity to secure your spot at our exclusive Family Camp Oi Can!
Family Camp Oi -Can runs from June 20-23 2024, in partnership with Camp Maple Leaf. It is hosted on a beautiful private island in the kawarthas, accessible by a wheelchair accessible barge.
Families are provided their own private cabins, and assigned their own “island guide” to help assist in all their daily activities. This is a traditional sleep away summer camp, with traditional camp activities, modified for safety for our oi population.
It’s an “all inclusive” weekend, with all meals, snacks, coffee for parents, and activities included with registration.
Full time nursing staff is present, as well as our very own bone health nurse practitioner, and Sick Kids Hospital ortho tech.
This is one of the many Canadian initiatives COIS provides funding for, to better serve our oi community!
Can’t wait to see you at camp! 🏕️🏊🏻🎨🎭🏹🛶🚣
(Camp OI CAN is a family camp for Canadian Families)
REGISTER HERE: https://www.pronto2.com/campjacobisland/apply2.php?groupIndex=23
Charity Golf Classic June 4th
Together we can drive change for the Canadian Osteogenesis Imperfecta Society
COIS-SCOI is a volunteer based, non-profit registered charity founded to support people born with Osteogenesis Imperfecta, as well as their families by building community networks of support, information, and education.
A key mission of COIS-SCOI is to raise funds for the Francis Glorieux Research Fellowship, which will enhance vital research to improve the care, treatment, and lives of those affefcted by OI.
Thank you for your generous support, we will see you on the course!
- Jacinta Whyte
Regional Conference Montreal
Join the OI Foundation, the Canadian OI Society and Shriners Hospitals for Children® - Canada for a Regional Conference on Saturday, May 4, 2024.
This one-day in-person event will include sessions and discussions on understanding and living with osteogenesis imperfecta. OIF Regional Conferences are great opportunities for new and long-time OI community members to learn from expert speakers and meet other individuals and families in the area. Session topics will include medical and orthopedic treatments, pain management, dental and mental health advice, as well as moderated peer to peer group discussions.
A volunteer run Kids Room with activities will be available for children ages 2 and up.
Funding is available to cover registration costs! Please contact the OI Foundation at Bonelink@oif.org to learn more.
REGISTER HERE: https://oif.org/event/montreal/
Please let us know when registering if you would like to use French interpretation. Veuillez nous indiquer lors de votre inscription si vous souhaitez utiliser l’interprétation en français.
RJ'S Birthday Fundraiser
Hello everyone! You might be wondering why this charming face is on your screen today. And no, I'm not auditioning for the next Hollywood movie....... yet.
I'm here to talk about something near and dear to my heart - Osteogenesis Imperfecta, or as I like to call it, OI, because who has time for tongue twisters, right?
So, what am I doing? Let me BREAK it down for you, pun intended. You see, I'm on a mission to help research OI. Yes, that's right, I'm diving headfirst into the world of bone-related shenanigans. But why, you ask? Besides the fact that I'm practically a walking encyclopedia of fractures...
I've been dealing with OI since the day I popped into this world. Over 100 fractures and counting! Beat that Guinness World Records!
But here's the kicker, when I have a problem, I can't just waltz into any old hospital and expect them to have the OI Handbook ready to go. And to top it all, there needs to be more new research happening to help cure this disease. Nope, most doctors and professionals haven't had much experience with OI, which leaves me feeling like a unicorn in a world of horses.
So, what's a guy with more broken bones than a mummy to do? Simple, we're setting up a fellowship grant to support research in OI and get more doctors to focus on this field. And where's all that going? Straight to the Canadian OI Society, baby!
Because let's face it, the OI community needs all the help it can get. There are hundreds of people out there just like me, dealing with OI and not getting the support they need. It's like trying to build a sandcastle without a shovel, frustrating and downright impossible.
Canada is at the forefront of this mission. We have incredible researchers like Dr. Francis Glorieux at the Shriners Hospital in Montreal who have been making waves in the field of OI research. But their work often flies under the radar, and that's where we can make a difference.
By supporting the newly established Dr. Glorieux fellowship through the Canadian OI Society, you're not just helping me – you're joining a movement to change the lives of hundreds of people living with OI. Together, we can ensure that every person with OI receives the support and care they deserve.
So, while giving me the ultimate 16th birthday gift, let's join hands to create something truly impactful. Skip the socks and ties, and let's invest in a future where OI is no longer a barrier to living life to the fullest.
What are you waiting for? Let's make some magic happen and pave the way for a brighter future for everyone battling OI!
Webinar - OI and Women's Health
CARDS Educational Webinar in Collaboration with the Canadian Osteogenesis Imperfecta Society (COIS)
Keynote Address:
Dr. Angela Cheung, PhD, MD, FRCPC, Professor, University of Toronto, Toronto General Hospital
“Osteogenesis Imperfecta and Women's Health"
Webinar - The Psychological Effects of Living with a Rare Bone Disease on Patients and Families
CARDS are collaborating with Soft Bones Canada on a webinar entitled "The psychological effects of living with a rare bone disease on patients and families". Our keynote speaker is Dr. Natalie Truba, Clinical Psychologist from Ohio State University.
Although HPP is singled out on this occasion, the principles apply to all individuals with a rare bone disorder, and to this end, members of the COIS are welcome to attend.
Register for this free Webinar here: https://www.kidsbonescanada.org/events-patients-friends-families
WALK N WHEEL 2022
Calling all Canadians! It’s your chance to support COIS (In partnership with the OIF) with our very own COIS-SCOI Walk N Wheel 2022. Our walk n wheel coincides with the 2022 National OIF Virtual Conference, to which we are a proud sponsor. Now is the time to register your Walk N Wheel team, and raise awareness and funds for the Canadian Osteogenesis Imperfecta Society (COIS)
Raise OI awareness in your neighbourhood, or city by creating your own team and participating in your own Walk N Wheel, starting on July 8th to kick off the Virtual National Conference, and support the work of COIS and the OIF. Complete the walk, on your own time, with a distance of your choosing. Make sure to tag COIS in your photos and videos, and feel free to post them here as well!
How do I participate?
Email info@cois-scoi.ca with your team name and team leader email address. COIS will then email you a link to your team page, where you can customize it with a personal story and photos, as well as your personal fundraising goal.
Share your fundraiser page via email and social media with your friends and family. Wear your favourite COIS, OIF or OI awareness gear, then walk or wheel around your neighbourhood on July 8th, or anytime that weekend. Don’t forget to tag COIS in your photos and videos!
As an extra incentive, for every $1300 a team raises, they will receive 1 free registration to the next in-person OIF National Conference.
We can’t be in person at conference just yet, but we can continue to show our support for the work of COIS and OIF.
Thanks to generous donors like you, here are some of the initiatives we have been able to bring to fruition over the past 2 years:
Launching the Francis Glorieux Fellowship For Medical Research. Ensuring sustainable excellence in ongoing research, treatment and management of OI.
Partnering with a local summer camp to create the very first OI Family Camp in Canada. Providing financial assistance to qualifying families wishing to attend summer camp.
Working with The Canadian Alliance for Rare Disorders of the Skeleton (CARDS), to provide educational webinars on a variety of current issues in OI clinical care.
Launching the COIS Physician and Clinic Directory to provide families with information to assist them in locating dependable multidisciplinary medical care.
Developing information and resource materials (in both official languages) to help the OI community enhance their OI understanding and adaptation skills.
Sponsorship of qualifying persons or families to attend the next in person OIF National conference.
Providing French translation services to the OIF Virtual National Conference
Supporting international OI initiatives, such as our support of the OI Federation of Ecuador, to align with our goal of achieving a global network of an OI Community without boarders.
Continue our special partnership with the OIF that is of great benefit to the Canadian community.
Hosting free community events to support our local OI communities, and build awareness.
Email info@cois-scoi to register your team today!
COIS is a registered Canadian charity. All donations over $20 will receive a charitable donation tax receipt
CRA #11883 4928 RR0001
Camp OI CAN
From Thursday June 23 to Sunday June 26, 2022, the Canadian Ostegogensis Imperfecta Society (COIS) is hosting Camp OI Can, in partnership with Camp Maple Leaf.
Camp OI Can is an all inclusive sleepover camp for children with Osteogenesis Imperfecta and their families. Camp OI Can offers kids with OI the real camp experience in a safe, comfortable, and most of all, FUN, setting!
Camp Maple Leaf is located on a private island on Pigeon Lake, in the beautiful Kawarthas (SW Ontario).
Spaces will be limited so please keep an eye out for further details!
REGISTER HERE!
Webinar - Dentofacial Issues in OI
Dentofacial Issues in OI: Current Knowledge and Future Directions
Keynote Speaker: Dr. Jean-Marc Retrouvey, DMD, MSc Department Chair and Professor of Orthodontics & Dentofacial Orthopedics at the University of Missouri-Kansas City, USA
Webinar - Respiratory health in OI during a global pandemic era
We are delighted to partner once again with the Canadian Alliance for Rare Disorders of the Skeleton (CARDS), to bring you an educational webinar entitled "Respiratory health in OI during a global pandemic era". The event takes place on 29 March 2022 from 7 to 9 pm via zoom. The keynote speaker is Dr. Sherri Katz, a respirologist from the University of Ottawa, and we will be joined by COIS panelists Kristin Hayes + Sarah Kamal and CARDS-affiliated physicians Drs. Angela Cheung + Marie-Eve Robinson. COIS President Jacinta Whyte will preside over the webinar along with Dr. Leanne Ward. The evening will wrap up with a "virtual coffee hour", to give the OI community a chance to connect socially.
An overview of the event can be found here: https://www.kidsbonescanada.org/events-patients-friends-families, and registration is found at bonescanada.org (events/for patients, friends and families).
Looking forward to seeing you all there!
Webinar - Optimal Management of OI
Join us for a collaborative webinar hosted by the Canadian OI Society and the Canadian Alliance for Rare Disorders of the Skeleton. (CARDS).
The webinar is entitled: Current Issues in the Optimal Management of Osteogenesis Imperfecta: a Canadian Perspective.
This virtual event takes place on Tuesday Oct 26, 2021 from 7 to 8:15 pm.
The goal of the webinar is to provide an educational update on current issues in OI clinical care, and to hold a discussion that addresses questions on the minds of individuals and families living with OI.
The event is moderated by Drs. Marie-Eve Robinson and Leanne Ward (Children's Hospital of Eastern Ontario, University of Ottawa), with the keynote address provided by Dr. Frank Rauch (Shriners Hospital for Children, McGill University).
We are excited to bring you this presentation and discussion! Hope to see you there!
Fellowship Fundraiser & Magic Show
Building excellence in Osteogenesis Imperfecta (OI) research and care for present and future generations!
The Canadian Osteogenesis Imperfecta Society (COIS) is both proud and honoured to launch the inaugural COIS Education Research Fund to support broader research into the treatment and management of OI.
This first Research Fellowship will honour the lifetime work and achievements of Dr. Francis Glorieux for his ground breaking research into the treatment and care of OI patients and his commitment to the global OI community.
The Francis Glorieux Fellowship For Medical Research, will provide a platform and opportunity for suitable medical researchers to take his legacy forward ensuring sustainable excellence in ongoing research, treatment and management of OI.
Please join us on May 29th to support the launch of the Francis Glorieux Osteogenesis Imperfecta Education Research Fellowship.
This will be a huge milestone for the COIS and the whole OI family, as we take the first major step in building this platform for continued excellence in OI care.
Looking for another way to donate to this wonderful cause? Text OICAN to 855-202-2100 to get a link to donate.
For tickets, silent auction items and 50/50 tickets Click here
Auction authorization issued under the Liquor Licence Act AA1206894
Family magic show to support COIS
Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” Osteogenesis imperfecta literally means “bone that is imperfectly made from the beginning of life.” A person is born with OI, and is affected throughout his or her lifetime.
The Canadian Osteogenesis Imperfecta Scociety (COIS) is both proud and honoured to launch the inaugural COIS education research fundraiser.
Please join us for a magic show with Bentastic that is fast-paced, highly interactive and a whole lot of fun for everyone.
This is a by donation event. Donations can be made here and check out our other event and online auction:
COIS Holiday Event
We are SO excited to invite you to our first virtual holiday social! Join us on Sunday December 13 at 3:00pm EST to learn more about the COIS, meet others with OI, play games and win prizes! Be sure to register at the link below! We can't wait to see everyone there!