Defeat Duchenne Canada

At this year's Family Forum, we were honoured to hear from Terrence and Torrance Ho—two spirited and gentle individuals who have shared their stories with the Canadian Duchenne community throughout the year. They passed on their knowledge and dove into the realities of living with the disease and being a full time caregiver to someone living with Duchenne. Their heartfelt message was one of hope and optimism. We cannot thank Terrence and Torrance enough for courageously telling their stories and showing us the power of compassion and unconditional love. Our hearts are with Terrence who sadly said goodbye to his brother on October 5, 2024. Torrance has left an indelible mark on the Duchenne community here in Canada and across the globe. We thank him sincerely for sharing his personal journey with us and serving as such an inspiration to so many. Terrence, Defeat Duchenne Canada and the entire Duchenne community will always be grateful to you and Torrance and will stand by you as you are a cherished member of our family of families. Visit Torrance's TikTok page to see the art he has made over the years: https://lnkd.in/eyVMy4TZ Listen to their story that was shared with us at the 2024 Family Forum: https://bit.ly/4e3yhr7.

Solid Biosciences announces plan to expand INSPIRE DUCHENNE study and include SickKids as a new trial site. More information provided in recent Community Letter to the #Duchenne #musculardystrophy community: https://bit.ly/4fBj8hV

REGENXBIO announces Health Canada authorization to initiate clinical trials for RGX-202, a gene therapy for the treatment of individuals diagnosed with #Duchenne #musculardystrophy, at centers in Canada in the first half of 2025: https://bit.ly/4fAAJXl

For 22 years, Eric Morden has lived with #Duchenne #musculardystrophy, a progressive disease that slowly robs individuals of muscle strength and mobility. Despite advances in treatments worldwide, Eric and many others in #Canada still don’t have access to the latest, most effective therapies. "Although I may not be very eligible for a lot because I'm so much older and I'm not ambulatory, making sure that it's available and here in Canada for the next generation is super important." - Eric Morden Eric's story is one of perseverance and frustration. Life-saving treatments that could slow the progression of Duchenne are available elsewhere, yet Canadians are left. Remove the barriers that stand in the way of accessing critical treatments. Donate today to make change happen faster and bring hope to Canadians living with Duchenne: https://bit.ly/40p85nI #TimeIsMuscle

Time is Muscle ⏰ Every day that passes means weakened muscles, lost mobility, and reduced independence for those with #Duchenne #musculardystrophy. Lives depend on making these life-saving treatments available in #Canada—now more than ever. This fall, you'll hear powerful stories from three families—Eric Morden, the Havills, and the Dhaliwals—who will share what Time is Muscle means to them. They face unimaginable challenges as they fight for access to treatments that are approved in other countries, but still out of reach here. We need to act fast to get these treatments in the hands of Canadians with Duchenne. Join the fight to help bring hope, strength, and life-changing treatments across our borders. Donate today to make an impact. Hear from them: https://bit.ly/40p85nI #TimeIsMuscle

Defeat #Duchenne Canada calls for accessible air travel for all who require wheelchairs for mobility: https://bit.ly/3YUZJTW

We were fortunate to hear from Elijah Stacy at the 2024 Family Forum. Elijah, a young man living with Duchenne, shared his personal story and some incredible words of inspiration with our community. All of this year's Family Forum recordings are now posted on our YouTube channel. Watch now and share with those affected by #Duchenne #musculardystrophy: https://bit.ly/3Yf5ZUX.

The 2024 Advocacy Summit 2024 was a huge success! It brought together more volunteers than ever, with big plans to make a difference for Canadians with #Duchenne #musculardystrophy! We will be tackling key areas like: 🔹 Government outreach 🔹 Support for the approval process 🔹 Accessibility in schools and beyond 🔹 Family support 🔹 Raising public awareness 🔹 Healthcare outreach 🔹 Expanding social support Want to support the cause? Sign up today – because Time is Muscle! Volunteer with us: https://bit.ly/3r9Pnko

Join us Wednesday, November 13 at 1 p.m. ET, for the latest information from Solid Biosciences during their free webinar: INSPIRE DUCHENNE Community Update. The Solid Biosciences team will present an update on the INSPIRE DUCHENNE clinical trial for SGT-003, a next-generation microdystrophin gene therapy for individuals living with #Duchenne #musculardystrophy. Register for this free webinar today: https://bit.ly/4fbWyw7.

Listen in to a Conversation on Life Transitions with Dr. Hana Alazem, Tara Previl, Eric Morden, & Emerson Bartel. All recordings from this year's Family Forum are now posted on our YouTube channel. Watch now and share with those who have been affected by #Duchenne #musculardystrophy: https://bit.ly/4dTvf92.