What happens when a treatment is approved, recommended, and recognized for its therapeutic value, but patients still can't access it? In a new op-ed, Muscular Dystrophy Canada's Stacey Lintern and Homira Osman examine what the Friedreich ataxia community is experiencing and what it could mean for the future of neuromuscular disorder treatment access in Canada. Read the full article and join the conversation: muscle.ca/advocacy/is-canada…

The Burnaby Fire Fighters raised an incredible $42,455 at their #FillTheBoot event this past November! With this remarkable contribution, their lifetime support for Canadians living with neuromuscular disorders has now surpassed $1.25 million. This June, we had the opportunity to thank their team and celebrate their extraordinary impact. We were honoured to have Bill Grindlay, a longtime advocate, volunteer, and retired Burnaby Fire Fighter, present an award of appreciation recognizing decades of dedication, fundraising, and community leadership. Bill played a pivotal role in the success of Burnaby’s #FillTheBoot events, helping build a legacy of generosity and service that continues to make a difference today. His commitment, alongside that of the Burnaby Fire Fighters, has inspired hope and support for countless individuals and families in the neuromuscular community. We are deeply grateful to the Burnaby Fire Fighters and the supportive community that stands behind them. Thank you for your continued passion, dedication, and commitment to making a difference.

Registration is now open for the 29th edition of the High Rise Challenge - muscle.akaraisin.com/ui/hrc2… Join the competition to see if you can be the High Rise Challenge Champion! Whether you're returning to improve last year's performance or joining for the first time, now is your chance to be part of the challenge. Test your speed, endurance and stamina by competing against other Fire Fighters, paramedics, police officers and military on Saturday, September 19, 2026, at the Cité de l’énergie in Shawinigan.   Sign up before July 31 to take advantage of the Early Bird registration fee of $50, which will be applied to your fundraising goal. Register now: muscle.akaraisin.com/ui/hrc2…

Fire Fighters are hosting boot drives to raise critical funds and awareness for Muscular Dystrophy Canada. Come, #FillTheBoot in your area, and help our Fire Fighter partners break down barriers for Canadians affected by #NeuromuscularDisorders. Every dollar raised helps us fund critical research, deliver programs and services and influence positive public policy changes. To learn more about how you make a difference, visit filltheboot.ca.

What does it take to bring more neuromuscular clinical trials to Canada and expand opportunities for Canadians to participate in trials for innovative treatments and therapies? Our newly published paper in the Orphanet Journal of Rare Diseases explores exactly that. We are proud to share the publication of "Implementation of a Neuromuscular Clinical Trial Network: A Rare Disease Model for Enhancing Clinical Trial Readiness, Capacity, and Access in Canada." As the number of neuromuscular clinical trials continues to grow, it is critical that Canada has the partnerships, expertise, and infrastructure needed to support high-quality clinical research and connect patients with trial opportunities. For many individuals living with neuromuscular disorders, clinical trials represent the first opportunity to access innovative therapies years before they become publicly available. Yet too often, Canadians face barriers to participation, including geography, limited site capacity, and the need to travel long distances or even leave the country to access trials. This paper describes the development of Canada's Neuromuscular Clinical Trial Network (CTN), a national initiative that brings together clinicians, researchers, trial coordinators, patient organizations, industry partners, and people with lived experience to strengthen the clinical trial ecosystem across the country. Three key learnings emerged from this work: 1️⃣ Clinical trial success requires more than scientific innovation. Dedicated infrastructure, trained personnel, streamlined processes, and collaboration across institutions are essential to attracting and delivering trials. 2️⃣ Individuals affected by neuromuscular disorders and families must be partners, not participants alone. Meaningful engagement of people with lived experience strengthens trial design, recruitment, retention, relevance, and patient-centredness. 3️⃣ National coordination creates opportunities. By connecting expertise, sharing resources, and reducing duplication, networks can enhance trial readiness, expand access, and help more Canadians participate in research regardless of where they live. For Muscular Dystrophy Canada, this work is about breaking down barriers to clinical trial participation and addressing a challenge we continue to highlight through our What About Canada? initiative: Canadians should not have to leave the country, navigate fragmented systems, or wait years longer than others to access innovative treatments and therapies. By supporting the development of the CTN in partnership with the Neuromuscular Disease Network for Canada (NMD4C), we are ensuring opportunities for Canadians to participate in research grows and helps ensure Canada remains at the forefront of neuromuscular therapeutic development. Read it here: link.springer.com/article/10…

Today, we learned that Health Canada has granted Priority Review to Duvyzat (givinostat) for the treatment of individuals living with Duchenne muscular dystrophy (DMD). Givinostat is a novel histone deacetylase (HDAC) inhibitor developed for Duchenne muscular dystrophy. Givinostat works differently from corticosteroids by targeting biological processes involved in inflammation, scarring, and muscle damage. By slowing these processes, givinostat is intended to help preserve muscle function and slow disease progression for individuals living with Duchenne. Canadian individuals and families have helped advance the development of givinostat through participation in clinical trials conducted in Canada. Their time, energy, and courageous participation have helped generate the evidence supporting the therapy's development and review. Givinostat was approved by the U.S. Food and Drug Administration in March 2024 and subsequently authorized in Europe in April 2025. More than 800 days after U.S. approval, Canadians are now seeing this therapy enter the Health Canada review process. Priority Review is an important milestone and reflects the significant unmet need that remains for individuals and families affected by Duchenne. It may help accelerate the regulatory review timeline, but it is also a reminder that regulatory review is only one step on the pathway to access. Following a Health Canada decision, therapies must still proceed through health technology assessment, price negotiations, and provincial reimbursement processes before they become available to many Canadians. This is exactly why Muscular Dystrophy Canada launched our What About Canada? initiative. Too often, Canadians living with neuromuscular disorders wait years longer than individuals in other countries to access innovative therapies. For progressive conditions such as Duchenne muscular dystrophy, time matters: time is muscle. Every month of delay can mean further irreversible loss of muscle function and missed opportunities to preserve independence, mobility, participation, and quality of life. Today's announcement is an important and encouraging milestone, but we know there is work ahead. Muscular Dystrophy Canada will continue to work in partnership with the Duchenne community, clinicians, industry partners Italfarmaco, regulators, and policymakers to help ensure that Canadians living with DMD have timely access to evidence-based treatment options, ensuring that the lived experiences of individuals and families affected by Duchenne, and the unmet needs they face, remain at the centre of regulatory, reimbursement, and policy decision-making. Because when innovative therapies are approved and available in other countries, Canadians with Duchenne muscular dystrophy should not have to ask: What About Canada? change.org/p/create-a-fast-t…

“The Walk & Roll for Muscular Dystrophy Canada is a really fun community event where everyone can participate while fundraising for research and support for those affected by neuromuscular disorders. The bonus is meeting the people and families, and sharing their story of where they are and where we need to be moving forward.” Robert Labossiere is our Walk & Roll Champion for Winnipeg. To learn more about Robert and to donate to a Walk & Roll event, visit: muscle.akaraisin.com/ui/Walk…

Join us for our upcoming #LetsTalkNMD webinar - Working Together to Build E-learning in Rare Neuromuscular Diseases: Lessons from Arthrogryposis. 🗓️: Jun 11, 2026 🕔: 5:00 PM ET 🔗: us02web.zoom.us/webinar/regi… In this session, we’ll explore how collaboration between people with lived experience, families, clinicians, and researchers leads to more meaningful and accessible education in rare neuromuscular diseases. In this session, you will: ✅ Learn how to co-develop knowledge through respectful partnerships ✅ Understand the role of multidisciplinary teams, including individuals with lived experience ✅ Explore how e-learning combines research with real-world insight ✅ See how co-development can strengthen communication and trust Register now: us02web.zoom.us/webinar/regi… If you have questions, please contact research@muscle.ca

We had a wonderful time meeting this years Region of Durham Walk & Roll for Muscular Dystrophy Canada Ambassador Delilah today! Thank you Delilah for all of the work you do spreading awareness and inspiring us & others to give back to their community! #filltheboot @MD_Canada

Coming up on June 19th, @OttFire Services-District 6 is hosting a golf fundraiser at Greensmere in support of @MD_Canada.

As #NationalAccessAbilityWeek comes to a close, I’m reminded that accessibility isn’t a one-week conversation—it’s a daily commitment. Every barrier removed creates an opportunity for someone to fully participate, belong, and thrive. Let’s keep listening, learning, and building communities where everyone can show up and be included. #NAAW @thedcampo

Fire Fighters are hosting boot drives to raise critical funds and awareness for Muscular Dystrophy Canada. Come, #FillTheBoot in your area, and help our Fire Fighter partners break down barriers for Canadians affected by #NeuromuscularDisorders. Every dollar raised helps us fund critical research, deliver programs and services and influence positive public policy changes. To learn more about how you make a difference, visit filltheboot.ca.

#NationalAccessAbilityWeek Accessibility requires continuous action. As part of National AccessAbility Week, Muscular Dystrophy Canada staff continue to take accessibility training to strengthen how we design, share, and deliver our communications and programs. Last year, we launched our new website with an accessibility-first approach. Since then, we have continued updating our digital communications to ensure our content, emails, and social media are accessible and inclusive. We also continue to improve how we plan and deliver in-person events, following accessibility guidelines to create more inclusive experiences for everyone who participates. Accessibility is not a one-time effort. It is an ongoing responsibility, and we continue to learn, adapt, and improve across all areas of our work. If you have questions or concerns about accessibility in our communications or events, please send us a message at communications@muscle.ca. We welcome your feedback. #BreakingDownBarriers

#NationalAccessibilityWeek For many Canadians living with neuromuscular disorders, mobility devices are essential for daily life. Yet too often, wheelchairs are damaged, delayed, or lost during air travel. Back in 2023, Muscular Dystrophy Canada partnered with AccessNow and Maayan Ziv to better understand the experiences of people with disabilities when travelling with mobility devices. After hearing from hundreds of travelers in Canada, we partnered with researchers and accessibility advocates to better understand the impact of mobility device mishandling and the urgent need for change. The findings are clear: mobility devices must be treated as essential assistive devices, not checked baggage. The research highlights the need for: • better handling protocols • stronger accountability • improved airline training • policies that prioritize accessibility and safety National Accessibility Week reminds us that accessibility requires continuous action, not just awareness. Read the paper: sciencedirect.com/science/ar… #BreakingDownBarriers

Walk & Roll season is well underway, and communities across the country are already coming together to make an impact. With 20 events left this season, Walk & Roll brings people from across Canada together to support Canadians living with neuromuscular disorders. By registering and fundraising, you help individuals access earlier diagnosis, find the right treatments, and get the equipment and support they need when they need it most. You also help advance research that moves us closer to better therapies and potential cures. There’s still time to be part of it. Find an event near you and register today: muscle.ca/walkandroll/event.…

Thank you to #WalkRollMDC Halifax, NS, champions Danny and Michelle Morris, for your continued efforts to raise awareness, fundraise, and advocate for the neuromuscular community. We are grateful for your commitment to our mission. We are now halfway through Walk & Roll season, and there is still time to get involved. Walk & Roll events are taking place across Canada, bringing communities together for a fun-filled day that helps break down barriers for people living with neuromuscular disorders. Join a Walk & Roll event near you and be part of the movement: muscle.ca/walkandroll/ #WalkAndRoll #BreakingDownBarriers globalnews.ca/video/11864379…

“What does it look like to grow up with a progressive rare disorder?” Brittany was diagnosed with Friedreich ataxia (FA) when she was 13 years old. At the time, she was still navigating school, friendships, and everyday life. Like many teenagers, she didn’t fully understand what living with a progressive rare disorder would mean long term. Over time, Brittany began to notice changes in her balance, coordination, mobility, and fatigue. As she learned more about FA, she also learned how much awareness, research, and advocacy still needed to grow. Nearly 20 years later, Brittany continues to adapt her daily life using assistive devices, accessible supports, and practical strategies that help her maintain independence. She also actively participates in the FA community through advocacy, awareness initiatives, and research efforts. Her journey reflects something important about neuromuscular disorders like FA: progress does not happen on its own. Brittany participated in clinical trials, including research connected to Skyclarys, the first approved treatment for #FriedreichAtaxia. While it is not a cure, it represents meaningful progress for the FA community and highlights why research and participation matter. Today, Brittany continues to use her voice to help raise awareness about FA and advocate for better understanding, accessibility, and support for people living with rare #NeuromuscularDisorders. Nearly 20 years after her diagnosis, progress in FA research continues to grow because individuals, like Brittany, living with the condition continue to raise their voices, participate in research, and push for change. This FA Awareness Month, help us continue breaking down barriers through awareness, advocacy, and research. #FAAwareness #BreakingDownBarriers

“We can’t keep telling Canadians to wait.” Thank you to Deccan and Manny Gill for joining CityNews 24 to help raise awareness about the realities facing Canadians living with neuromuscular disorders. We’re also deeply grateful for your fundraising efforts for the neuromuscular community. Canadians should not have to watch treatments become available around the world while families here continue waiting. Walk and Roll for Muscular Dystrophy Canada continues to bring communities together across the country to raise funds for research, advocacy, equipment, support programs, and services for the neuromuscular community. Register for a Walk & Roll event near you: muscle.ca/walkandroll/ At the same time, our What About Canada? initiative continues pushing for faster access to life-changing neuromuscular treatments in Canada. Sign the petition to help us #BreakDownBarriers to treatments: change.org/p/create-a-fast-t… #WalkAndRoll #AdvocacyInAction #BreakingDownBarriers

The Merritt Fire fighters Association raised an incredible $4,308 during their August 2025 #FillTheBoot, their biggest total to date! We’re so inspired by their passion and dedication to making each event more impactful year after year. Thank you to the amazing Merritt team for giving your time, energy, and passion to change lives on and off shift. You continue to be a true beacon of hope and inspiration across the neuromuscular community. You can help make a difference, too. Visit filltheboot.ca.

Huge thank you to the Lake Country Fire Department! During Muscular Dystrophy Awareness Month, their incredible team raised an amazing $1,780.75, making a huge impact for Canadians living with neuromuscular disorders. Their connection to their community and commitment to supporting our mission is unmatched. We are so grateful for their support and for including Muscular Dystrophy Canada in their meaningful community initiatives. Your dedication truly makes a difference for families across BC and across Canada. Thank you, Lake Country, and thank you to everyone who stopped by to donate and show their support. Stay tuned for September as the team gears up for another year of changing lives!