The 2024 Family Forum, hosted in partnership with the Children’s Hospital of Eastern Ontario (CHEO), has successfully concluded. The event, which took place in person in Ottawa, Ontario and online, provided a valuable education and support opportunity for the Canadian Duchenne muscular dystrophy community. With nearly 200 participants and more than 20 speakers from across the world, the weekend was filled with engaging information, inspiring connections, and hope for the future.
“What an incredible weekend at the Defeat Duchenne Canada Family Forum! A heartfelt thank you to all the speakers, sponsors, and participants for coming together to ensure that each person affected by Duchenne is heard, supported, and empowered with the knowledge they need. Our family of families is stronger because of all of you.”
Lisa McCoy, CEO at Defeat Duchenne Canada
Event Highlight: Update from Kye Pharmaceuticals
Kye’s announcement at Defeat Duchenne Canada’s 2024 Family Forum about their impending application to Health Canada for the approval of Vamorolone was a highlight of the weekend. This announcement marks a major milestone for those living with Duchenne muscular dystrophy in Canada and their families as when approved, Vamorolone will become the first ever approved treatment for Duchenne muscular dystrophy in Canada.
“Our team at Kye Pharmaceuticals looks forward to submitting Vamorolone to Health Canada and collaborating with the DMD community to ensure there is equitable access to novel therapies across Canada.”
John McKendry, President of KYE Pharmaceuticals
Defeat Duchenne Canada is proud to have invested in phase III trials for Vamorolone and wishes to acknowledge that this would not have been possible without the generous support of our many donors.
Now our role is clear! Defeat Duchenne Canada is committed to working together with the outstanding team at Kye Pharmaceuticals and our extended Duchenne family of families across Canada to support Kye’s application to Health Canada. We must raise our collective voices to communicate the urgency and critical importance of timely access to Vamorolone for any Canadian for whom this treatment would be beneficial.
Lisa McCoy, CEO at Defeat Duchenne Canada
Defeat Duchenne Canada will remain steadfast in our commitment to support this transformational achievement. Watch their full message by visiting the link below.
Recordings
Did you miss this year’s conference, want to re-watch a session or send a link to a family member or friend? You can find the recordings on our YouTube channel, and be sure to subscribe to receive notifications of future educational videos.
Evaluation
Our goal is to create beneficial education and support opportunities for the Canadian Duchenne community, but we need your input! If you haven’t done so already, please take five minutes to share your feedback through our online survey.
Photo Gallery
Finally, relive the cherished memories of the 2024 Family Forum through the photo gallery:
Stay tuned for the announcement of the date for the 2025 Family Forum, which will be communicated in the new year. Defeat Duchenne Canada looks forward to hosting another inspiring gathering for the Duchenne community.