News

What a year!

As we look back on 2024, I am so proud of what we accomplished. From coast to coast, we learned and affected change together. We continue to break through barriers and challenge ourselves at every turn. With our clients and their families at the heart of everything we do, we are excited and optimistic for what’s to come.

Because of you and so many like you, we have changed lives.

Together we:

  • Invested in three clinical fellows, two post-doctoral research fellows and several clinical and translational research projects. Investments in people and projects like this help to safeguard Canada’s contributions to discoveries, while at the same time, ensures that physicians have the necessary expertise to care for those living with neuromuscular disorders.
  • Supported access to assistive devices, technology and medical equipment to help our clients meet their goals, whatever they may be! These investments have helped some remain independent and in their own homes. For others necessary equipment has ensured their safety.
  • Navigated the complexities of policy change and are so proud that 100% of Canadian newborns have access to screening for spinal muscular atrophy. This means that families receive early diagnosis and the life-saving treatments they need, when they need it most.
  • Listened and learned through caregiver and family retreats. We know that living with a neuromuscular disorder can be isolating and we know that there is power in bringing people together. These retreats can be life-changing for all family members and a reminder that they are not alone.
“Thank you once again for the financial support provided by Muscular Dystrophy Canada. Last fall, my wife and I attended two community events, and through the warm atmosphere and conversations with others, we truly felt the care, support, and dedication that Muscular Dystrophy Canada provides to people living with neuromuscular disorders. As a new Canadian, these experiences have been particularly moving and impactful. Your kindness has not only touched my family deeply but has also become a vital source of encouragement. It has helped me face physical challenges and eased my mental and financial stress as I adjust to life in Canada. Thank you!”

Qingling Zeng, Muscular Dystrophy Canada client

These incredible investments continue to be top priorities as we enter 2025.

And we need your continued support today to ensure that our critical work continues. Please join us and become an MDC Changemaker. Becoming an MDC Changemaker means making a regular monthly donation.

Donate now

With your monthly gift, you can provide Muscular Dystrophy Canada with a crucial source of ongoing funding, enabling us to continue supporting the neuromuscular community, while also responding to immediate and urgent priorities – like emerging, promising research.

“We cannot afford to slow down. I can feel the momentum building as we are at the cusp of breakthroughs. New treatments and even cures are on the horizon. The future is now.”

Dr Hanns Lochmüller

Please give generously as we invest in the neuromuscular community. Together, we have already accomplished so much, and we are excited for what the future holds.

Donate now

Your gift, of any size, has an immediate impact. With your support, we can move forward into 2025, working to ensure that every Canadian affected by a neuromuscular disorder has an opportunity to achieve their own goals this year.

Thank you for your ongoing commitment.

Sincerely,

Stacey Lintern
CEO, Muscular Dystrophy Canada

P.S. There are lots of benefits available to you as an MDC Changemaker… including having a dedicated staff member to answer any questions you might have!

Muscular Dystrophy Canada Launches Initiative to Improve Genetic Testing Access for Myotonic Dystrophy

Toronto, Ontario, Canada, January 27, 2025 – Muscular Dystrophy Canada is thrilled to launch an innovative initiative designed to tackle the diagnostic hurdles experienced by individuals with myotonic dystrophy. This transformative, year-long project will offer no-cost genetic testing to those with suspected myotonic dystrophy, providing a critical pathway to earlier and more accurate diagnoses. Alongside genetic testing, Muscular Dystrophy Canada will also provide access to post-test genetic counseling, empowering individuals to better understand their results and make informed decisions about their health and future clinical care.

“The journey to a diagnosis is often long and filled with barriers for individuals living with neuromuscular disorders, and this is especially true for those with myotonic dystrophy,” says Dr Homira Osman, Vice-President of Research and Public Policy at Muscular Dystrophy Canada. “Without a confirmed diagnosis, patients face significant uncertainty—not only about what is happening to them but also about how their condition might be treated. Access to timely and accurate genetic testing changes that. It empowers individuals with a clear understanding of their condition, enabling them to make informed choices about their care, explore opportunities for emerging treatments and clinical trials, and manage care. A confirmed diagnosis is the cornerstone of better health outcomes and improved quality of life.”

Myotonic dystrophy is a genetic disorder that affects muscles and other body systems, causing symptoms such as muscle weakness, difficulty relaxing muscles (myotonia), and, in some cases, problems with the heart, eyes, and cognitive function. There are two main types of myotonic dystrophy: Type 1 (DM1) and Type 2 (DM2), both caused by mutations in specific genes. With over 1,200 individuals affected by DM registered with Muscular Dystrophy Canada, it is the most prevalent neuromuscular disorder in Muscular Dystrophy Canada’s database.

Stacey Lintern, CEO of Muscular Dystrophy Canada says, “Muscular Dystrophy Canada is uniquely positioned to lead this initiative, leveraging its proven track record in expanding newborn screening for spinal muscular atrophy nationwide. With established partnerships across healthcare, research, and public policy, Muscular Dystrophy Canada has the expertise to drive meaningful impact and support early and accurate diagnoses for Canadians affected by myotonic dystrophy.”

“My family’s journey with myotonic dystrophy has taught me that knowledge is power,” says Teresa Buffone of Ontario, whose son is affected by myotonic dystrophy. “When my son needed surgery, a confirmed diagnosis from genetic testing made a world of difference to the care he received. Patients with myotonic dystrophy can react badly to general anesthesia, leading to complications that can be deadly. Having a confirmed diagnosis empowered me to speak with the surgeon and ensure that he would receive the care that was right for him – a confidence that could very well have saved his life. Genetic testing gave us the answers we needed and has enabled us to face the challenges ahead with courage.”

“As a family affected by myotonic dystrophy, we’re filled with hope knowing that treatments are finally becoming a reality,” says the Leboeuf family, of Ontario. “Clinical trials and innovative medicines hold so much promise, but they require a confirmed diagnosis to participate. While this is an exciting time, we also recognize how devastating it can be for those who remain undiagnosed, as it creates a significant barrier to accessing these life-changing advancements sooner. Ensuring access to timely and accurate diagnoses is essential for unlocking opportunities and giving everyone a chance at better outcomes.”

Stacey continues, “At Muscular Dystrophy Canada, we believe that access to genetic testing is a fundamental right of Canadians affected by a neuromuscular disorder and we are grateful for the partnership of the neuromuscular community for helping to make this life-changing project a reality. With support from clinicians, researchers, healthcare practitioners, volunteers, donors, Canadian Fire Fighters, like-minded organizations, and sponsors, this project is a significant step forward into breaking down the barriers that keep Canadians affected by myotonic dystrophy from living their best lives.”

If you or someone you know is interested in receiving genetic testing for myotonic dystrophy, please reach out to Muscular Dystrophy Canada at research@muscle.ca or 1-800-567-2873, Ext. 5401.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those affected with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit muscle.ca or call our toll-free number at 1-800-567-2873.

FOR MORE INFORMATION CONTACT:

Homira Osman
Vice-President, Muscular Dystrophy Canada
Homira.Osman@muscle.ca
1-800-567-2873 ext. 9037

100% of Canada is now screening infants for spinal muscular atrophy (SMA)

Muscular Dystrophy Canada is thrilled to announce that after three years of working with each Canadian province and territory, all babies born in Canada can now be tested for spinal muscular atrophy (SMA). This milestone means infants diagnosed with SMA, the most fatal genetic disorder in children under two years of age, can receive life-changing treatment before symptoms even develop. It also marks the first neuromuscular condition to be added to screening panels across the country.


“Early diagnosis and effective treatment are critical to achieving the best possible outcomes for babies born with this neuromuscular condition,” said Dr. Pranesh Chakraborty , Chief of the Department of Pediatrics at Children’s Hospital of Eastern Ontario and Chair of the Department of Pediatrics at uOttawa’s Faculty of Medicine. “Historically, most infants and children with SMA would have been diagnosed only after they have developed weakness and respiratory difficulty, at a time when most of their motor neurons have been irretrievably lost. Now, instead of facing life-limiting disability and, in the most severe cases, a life expectancy of less than two years, babies affected by SMA every year in Canada shall be diagnosed within the first weeks of life allowing them to rapidly receive therapy and improved outcomes.”

The addition of SMA to newborn screening panels in all provinces and territories breaks down barriers and inequities families face simply because of where they live. It also acknowledges that screening for rare genetic diseases and access to early care result in positive health outcomes and long-term cost benefits for everyone. This is a tremendous accomplishment to start improving early detection and prevention.

We are so grateful for the partnership with Novartis Pharmaceuticals Canada, who helped us make this a reality across Canada. And a very special thank you to our dedicated community, generous donors and sponsors, Fire Fighter partners, clinicians, clients, and advocates for your unwavering support. We have helped make a life-changing impact on newborns and their families nationwide. We did it together—thank you!

For more information on this and other advocacy initiatives, please reach out through the research Hotline at 1-800-567-2873 ext. 114 or via email at research@muscle.ca.

Was your child diagnosed with SMA through newborn screening?

If so, we offer a specialized program called SMArTrack to help monitor, assess, and provide answers during the first two years of their life. For more information, or to get involved, please reach out to research@muscle.ca.

The 2024 Walk & Roll for Muscular Dystrophy Canada was a huge success thanks to you!

The Walk & Roll for Muscular Dystrophy Canada 2024 season is officially over, and it was a huge success, raising more than $1,089,000! Through 30 in-person events, we hosted more than 2,200 registered participants who joined us for fun-filled days, that helped break down the barriers faced by our neuromuscular community.

These special community events would not have been possible without the support of dedicated volunteers. We are so grateful to the 225 dedicated volunteers from across the country who donated their talent, skills and time totalling 1,000 volunteer hours to help make these amazing events the best they could be. Their hard work and enthusiasm helped create amazing events, and we are deeply thankful for their unwavering support and commitment to making a difference. Thank you!

This year, through a new initiative, we were thrilled to also support many individuals, groups, and schools with hosting their own Walk & Roll events in their local communities. These dedicated community members turned their commitment to breaking down barriers for the neuromuscular community into positive change by organizing, promoting and hosting their own Walk & Roll events. Thank you for your dedication and great work!

Thank you to all participants, donors, sponsors, volunteers, and everyone who participated, fundraised or attended a Walk & Roll for Muscular Dystrophy Canada event this year. Because of your hard work and dedication, Canadians affected by a neuromuscular disorder can continue to count on Muscular Dystrophy Canada for supportive programs and services, while we continue to fund ground-breaking research and champion advocacy efforts on their behalf. Thank you for making a difference and we hope to see you all again at next year’s Walk & Roll!

For more information on the Walk & Roll for Muscular Dystrophy Canada, visit walkrollmdc.ca.

Donor support makes a difference

When Sally and Cy Elston were approached by their longtime friend, Lloyd Lawrence, about supporting Muscular Dystrophy Canada, they rose to the challenge. Initially supporting a Dragon Boat Race fundraiser in Barrie, Ontario, their support has evolved over many years.
Now, Sally has continued the tradition they began together through her generous gifts to Muscular Dystrophy Canada. When asked why, Sally is clear. “It’s about people”, she says. “And the joy of knowing you are doing something for others”. While Cy passed away 15 years ago, Sally has remained steadfast in prioritizing philanthropic opportunities, “where (she) can do the most good for lovely people”.

Support from donors, like Sally, helps to eliminate the barriers that keep the neuromuscular community from reaching their full potential. Thank you for supporting our life-changing work. Every dollar matters and every donation is powerful!

Muscular Dystrophy Canada’s Annual Report is now available

2023-2024 marked another year of Muscular Dystrophy Canada “Breaking Down Barriers” for the Canadian neuromuscular community. If you would like to review Muscular Dystrophy Canada’s 2023-2024 Annual Report, please visit here.

Lise Poulin, Board Member and Stacey Lintern, CEO share highlights from Muscular Dystrophy Canada’s 2023–2024 Annual Report.

Clinical Trials in Canada for Neuromuscular Disorders Are on the Rise

In recent years, the number of clinical trials available in Canada for individuals with neuromuscular disorders has increased significantly, with opportunities doubling or even tripling in some cases. This is exciting news for people affected by neuromuscular disorders and their families as more trials mean greater access to emerging treatments, innovative research, and, potentially, life-changing therapies.

Clinical trials are research studies that explore new medical treatments, drugs, or therapies to determine their effectiveness and safety. These trials follow strict protocols and are essential in bringing new treatments to market. Clinical trials happen in phases, each with a distinct purpose. Early-phase trials (Phase 1) focus on safety and dosage, while later phases (Phase 2 and 3) explore the treatment’s effectiveness in larger groups. The more advanced the phase, the closer the trial is to delivering real-world treatments, with Phase 3 often being the final step before approval.

For individuals with neuromuscular disorders, participating in a clinical trial can offer access to cutting-edge treatments that are not yet widely available. The value of participating in a clinical trial extends beyond access to new treatments. Clinical trials contribute to medical knowledge that can lead to breakthroughs and better outcomes for future generations. By participating, individuals play an active role in their healthcare and help advance research that could lead to the development of a cure.

However, participating in clinical trials requires courage, grit, and a willingness to contribute to the scientific community. It often involves uncertainty, dedication, and perseverance, but it also means becoming a part of the journey to uncover new therapies and treatments that could one day transform care for all affected by neuromuscular disorders.

Navigating Clinical Trials: It’s Not Always Straightforward

While more trials are now available, navigating the clinical trial landscape can be complex. In some cases, like with Duchenne muscular dystrophy, there may be multiple trials available at the same time, each testing different treatments or approaches. Deciding which trial is right for you or your loved one can be challenging. Factors like trial eligibility criteria, location, and the type of intervention being tested must all be considered.

Muscular Dystrophy Canada Can Help

At Muscular Dystrophy Canada, we understand the importance of making informed decisions when it comes to clinical trials. We are here to help by sharing the latest clinical trials for various neuromuscular disorders and can provide timely information on available trials. We can help you find trials that match your specific condition, location, and eligibility criteria. Muscular Dystrophy Canada can assist in reaching out to trial coordinators and investigators to get answers to important questions about trial details, participation requirements, and more. We can also support families in interpreting clinical trial data, helping to make well-informed decisions.

If you’re curious about clinical trials and want to explore whether one might be right for you or your loved one, please contact research@muscle.ca.

Opening Doors: Navigating University with Neuromuscular Conditions

Choosing the right university or college is always a big decision, filled with considerations about programs, campus life, and future goals. But for students living with neuromuscular conditions, the decision becomes even more complex, as accessibility and support services are crucial to their academic success and well-being. The problem? There isn’t a centralized place where students can easily find information about the services, supports, and accommodations available at post-secondary institutions across Canada.

To address this gap, Muscular Dystrophy Canada is collecting data on a wide range of accessibility aspects, including physical spaces such as accessible classrooms and building, note-taking services and support for class materials, class structure and accommodations tailored to individual needs, residence options that cater to accessibility and personal care needs, transportation availability to and from campus, testing and exam accommodations for fair assessment, and washroom facilities and other essential amenities for universities and colleges across Canada.

What We Heard

In addition to gathering this data, Muscular Dystrophy Canada connected with students living with neuromuscular disorders who are currently enrolled in post-secondary institutions. We learned that:

  • Many students are restricted in their selection of institutions due to their medical and accessibility needs.
  • While some accommodations, like note-taking services meet basic needs, many students have additional unmet needs that negatively impact their academic performance and overall success.
  • Inadequate accommodations provided by universities and colleges force students to pay out-of-pocket for extra support, adding a significant financial burden.
  • Students with neuromuscular conditions often find there is limited financial assistance specifically tailored to their unique circumstances.
  • Many university and college accessibility services lack sufficient knowledge about neuromuscular conditions, which limits the support available.
  • Attendant care services are a critical and valuable resource that significantly enhances the experience of students with neuromuscular conditions. These services provide essential daily living support.

If you or someone you know is attending a post-secondary institution while managing a neuromuscular condition, Muscular Dystrophy Canada is here to help. We are dedicated to connecting you with the right resources and providing the information and support you need to reach your academic goals. Plus, thanks to the generosity of our donors, funds may be available to support post-secondary students—reach out to research@muscle.ca to learn more!

Help families, like Danielle’s, get the answers and support they so desperately need.

Danielle has defied all odds throughout her life. As a world-record holding Paralympian, Danielle challenged herself to win a medal, and not only did she win one, but over the course of two Olympic games, she won seven. Danielle is a published book author and engages many as a motivational speaker at events nationwide. She’s a proud mom of five and has earned an honourary doctorate. Danielle also has spinal muscular atrophy (SMA).

When she was two years old, Danielle was diagnosed and her lifelong connection to Muscular Dystrophy Canada began.

Because of our donors, Muscular Dystrophy Canada has been able to stand shoulder to shoulder with Danielle and her family throughout every stage of her neuromuscular journey, from supporting them as they navigated through some difficult questions, helping to provide vital equipment and working together to ensure the systems around Danielle were set up to ensure her success.

Please make a gift today and help families, like Danielle’s, get the answers and support they so desperately need.

Donate now

“Not only did Muscular Dystrophy Canada provide emotional support to my family, but throughout my childhood they also provided support with equipment, advocacy, and navigating life with a neuromuscular disorder,” Danielle says. “Growing up, I had many questions: Would I be able to have kids? Would I pass this disorder on to my children? What would my prognosis look like? No matter what question or fear I had, I was always able to turn to Muscular Dystrophy Canada.”

Today, Danielle is thriving. But life isn’t always easy. Because receiving a neuromuscular diagnosis can be complex, Danielle received a new diagnosis recently. The good news is that this was possible because of our donors. Your investments ensured research continued to accelerate and change lives.

“Thanks to Muscular Dystrophy Canada’s donors, I have been able to finally get my official diagnosis of spinal muscular atrophy – lower extremities dominant (SMA-LED), after 10 years of genetic testing” Danielle says. “Thanks to this investment, I was also able to learn that my condition is genetic and there was a 50/50 chance it would be passed onto my children.”

Originally told she wouldn’t pass on her disorder, Danielle’s middle son, Samson was recently diagnosed with spinal muscular atrophy, just like his mom.

The path ahead for Danielle and Samson isn’t a straight line but is made easier because of Muscular Dystrophy Canada’s support, programs and services.

Our team is at the end of each phone call. We will answer every email, and we will help ensure Danielle, her family and everyone living with a neuromuscular disorder has every opportunity to meet their own goals, whatever they may be.

Donate today!

100 percent of Canada is now screening infants for spinal muscular atrophy, a potentially fatal disorder

 

Muscular Dystrophy Canada and partners deliver on goal outlined in Canada’s Rare Disease Strategy

Toronto, Ontario, Canada, August 20, 2024 – Muscular Dystrophy Canada is thrilled to announce that after three years of working with each Canadian province and territory, all babies born in Canada can now be tested for spinal muscular atrophy (SMA). This milestone means infants diagnosed with SMA, the most fatal genetic disorder in children under two years of age, can receive life-changing treatment before symptoms even develop. It also marks the first neuromuscular condition to be added to screening panels across the country.

“Early diagnosis and effective treatment are critical to achieving the best possible outcomes for babies born with this neuromuscular condition,” said Dr. Pranesh Chakraborty Chief of the Department of Pediatrics at Children’s Hospital of Eastern Ontario and Chair of the Department of Pediatrics at uOttawa’s Faculty of Medicine. “Historically, most infants and children with SMA would have been diagnosed only after they have developed weakness and respiratory difficulty, at a time when most of their motor neurons have been irretrievably lost. Now, instead of facing life-limiting disability and, in the most severe cases, a life expectancy of less than two years, babies affected by SMA every year in Canada shall be diagnosed within the first weeks of life allowing them to rapidly receive therapy and improved outcomes.”

In 2020, only Ontario and the Baffin region in Nunavut screened for SMA at birth. Today, regardless of where in Canada a child is born, they will receive the same screening; and, if SMA is diagnosed, the same healthcare, treatment and opportunity to thrive.

“I could not imagine what our life would look like if my daughter were not given genetic, SMA-testing at birth,” said Taylor Diakew, mother of a 2-year-old with SMA. “Today, thanks to her early diagnosis, and quick access to treatment, she is a happy, healthy little girl who does not exhibit any signs of SMA – she is walking, running, climbing, and talking like any child her age. Thanks to SMA newborn screening, she can live the best life possible.”

The addition of SMA to newborn screening panels in all provinces and territories breaks down barriers and inequities families face simply because of where they live. It also acknowledges that screening for rare genetic diseases and access to early care results in positive health outcomes and long-term cost benefits for everyone.

“It is a tremendous accomplishment to start improving early detection and prevention, one of the goals outlined in Canada’s Rare Disease Strategy. However, this success was only possible because of the willingness of provincial and territorial governments to work alongside Muscular Dystrophy Canada to add SMA to newborn screening. This is a significant step forward, and we hope it leads to the inclusion of other neuromuscular conditions on screening panels,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “We are grateful for the partnership with Novartis Pharmaceuticals Canada who helped us make this a reality across Canada and for every clinician, researcher, provincial laboratory lead, volunteer, donor, Canadian Fire Fighter, like minded organization, and government member who supported this project.”

“This initiative holds immense value for the entire Canadian neuromuscular and rare disease community, laying the groundwork for future transformative and life-changing initiatives,” said Dr. Homira Osman, VP of Research and Public Policy, Muscular Dystrophy Canada. “There are many progressive neuromuscular disorders where time is of the essence: early diagnosis and prompt access to treatments are critical drivers to achieving the best possible outcomes. Muscular Dystrophy Canada will now leverage the knowledge and findings gained from this initiative to ensure other neuromuscular disorders are included in newborn screening programs nationwide.”

 

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those affected with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please explore our website or call our toll-free number at 1-800-567-2873.

 

FOR MORE INFORMATION CONTACT:

Homira Osman
Vice-President Research & Public Policy
Muscular Dystrophy Canada
Homira.Osman@muscle.ca
437-912-9037