News – Muscular Dystrophy Canada

Muscular Dystrophy Canada Welcomes Danielle Campo McLeod as National Ambassador

March 17, 2025 – Toronto, ON – Muscular Dystrophy Canada is proud to announce the appointment of Danielle Campo McLeod as our new National Ambassador. This inaugural role is a key component of Muscular Dystrophy Canada’s strategy to expand our reach, elevate brand awareness, and increase engagement with new and existing stakeholders across Canada.

Reporting directly to the CEO, Danielle will play a pivotal role in raising awareness about neuromuscular disorders, while deepening connections within our diverse community. As National Ambassador, Danielle will inspire action and foster meaningful relationships with partners, Fire Fighters, donors, sponsors, and supporters. She will work closely with Muscular Dystrophy Canada teams nationwide to help drive our mission and enhance the services and support we offer to individuals and families affected by neuromuscular disorders.

Danielle’s role will encompass a variety of impactful responsibilities, including:

Program Development: Creating and implementing initiatives to increase awareness and understanding of neuromuscular disorders.
Spokesperson & Advocacy: Serving as a key representative at events and media engagements, and leading initiatives focused on awareness, inclusion, and advocacy.
Community & Stakeholder Engagement: Strengthening relationships with Muscular Dystrophy Canada donors, volunteers, Fire Fighters, partners, and broader community groups across Canada.
Social Media & Digital Engagement: Amplifying Muscular Dystrophy Canada’s presence and impact through compelling storytelling and digital campaigns.
Fundraising & Philanthropy: Supporting national fundraising efforts and engaging Fire Fighter locals and departments.

Danielle brings a unique blend of lived experience, professional expertise, and deep personal commitment to Muscular Dystrophy Canada’s mission. Diagnosed at age two with spinal muscular atrophy (SMA) – initially misdiagnosed as muscular dystrophy – Danielle has turned her journey into a source of inspiration and advocacy.

A three-time Paralympic gold medalist, world-record holder, and recipient of the 2024 National Hero Award from Canada’s Walk of Fame, Danielle’s accomplishments both in and out of the pool are extraordinary. Her career as a decorated Paralympian, motivational speaker, author, and coach has empowered countless individuals and organizations to embrace resilience, inclusion, and peak performance.

A long-time Muscular Dystrophy Canada volunteer and champion, Danielle has been instrumental in generating millions of dollars in fundraising efforts in partnership with Canadian Fire Fighters. As a mother of five, including two children living with SMA, Danielle brings a deeply personal perspective and unwavering commitment to building a more inclusive and supportive future for all Canadians living with neuromuscular disorders.

“We are absolutely thrilled to welcome Danielle back to Muscular Dystrophy Canada in this new and exciting role,” says Stacey Lintern, CEO of Muscular Dystrophy Canada. “Danielle’s authenticity, passion, and leadership will undoubtedly inspire our community and strengthen our impact nationwide.”

Danielle’s remarkable story of overcoming adversity, combined with her expertise in advocacy, program development, and community engagement, will position Muscular Dystrophy Canada for new heights of success and visibility.

For media inquiries or to learn more about Danielle’s role as National Ambassador, please contact:

Stacey Lintern, CEO
Stacey.lintern@muscle.ca
613-893-7668

BREAKING DOWN BARRIERS: ADVANCING ACCESS TO EARLY DIAGNOSIS, TREATMENTS, AND ESSENTIAL EQUIPMENT THROUGH ADVOCACY

For many Canadians with neuromuscular disorders, the journey to diagnosis is long and frustrating, marked by uncertainty, misdiagnoses, and delays. Myotonic Dystrophy Type 1 affects not only mobility but also the heart, cognition, and the gastrointestinal system, yet many individuals spend years searching for answers before finally accessing genetic testing. These delays result in missed opportunities for early intervention, symptom management, family planning, and access to clinical trials and emerging treatments.

Recognizing the need for earlier, more equitable access, Muscular Dystrophy Canada has launched a nationwide initiative to improve genetic testing for Myotonic Dystrophy.

A timely and accurate diagnosis is more than just an answer – it unlocks specialized care, clinical trials, and innovative treatments that could slow disease progression and improve quality of life. Through a landscape analysis, Muscular Dystrophy Canada is identifying testing barriers, reimbursement challenges, and long wait times while at the same time offering no-cost genetic testing and counselling for Canadians with a suspected diagnosis or family history of Myotonic dystrophy.

Addressing Delays in Treatment Access

Canadians face delays due to regulatory approvals and reimbursement barriers. Even after Health Canada approves a therapy, provincial funding decisions can take months or even years, leaving patients waiting for treatments that could preserve mobility, independence, and quality of life.

Duchenne muscular dystrophy, for example – approved treatments exist in other countries, yet none are available in Canada. Individuals with Myasthenia Gravis face a different challenge – drugs approved by Health Canada remain inaccessible because they are not yet covered by provincial drug plans. Meanwhile, access to spinal muscular atrophy treatments is inconsistent across Canada, with adults in Quebec eligible for therapy while those in other provinces are denied.

Muscular Dystrophy Canada continues to advocate for faster access to diagnosis, treatment approvals, and reimbursement policies that put persons impacted first.

Breaking Down Financial Barriers: Ensuring Access to Essential Equipment

For individuals with neuromuscular disorders, mobility aids, assistive devices and medical equipment are essential to safety, independence, and quality of life. Yet, Hoyer lifts, wheelchairs, hospital beds, and pressure-relieving mattresses – critical for mobility, caregiver safety and daily living – are not consistently covered by provincial health programs and or private insurance.

Without adequate funding, many individuals are left paying out of pocket, waiting years for partial assistance, or simply going without. Thanks to generous donors, Muscular Dystrophy Canada’s Equipment Program helps bridge some gaps, but demand far exceeds available resources. Through #YourDevicesYourRights, Muscular Dystrophy Canada is working with like-minded community partners advocating for improvements in funding with provincial programs.

While governments cannot cover everything, some equipment – like Hoyer lifts or wheelchair adaptations – is essential. No one should be denied access because of where they live or their financial situation. Ensuring consistent, needs-based funding across Canada is a matter of dignity, safety, and human rights.

Through your support of Muscular Dystrophy Canada, you are making an impact. Join us in breaking down barriers to ensure that all Canadians with neuromuscular disorders receive the diagnosis, treatment, and support they need – when they need it.

REGISTRATION IS NOW OPEN FOR THE 2025 WALK & ROLL FOR MUSCULAR DYSTROPHY CANADA!

Join us at one (or more!) of 30 in-person Walk & Roll events taking place across the country! At each event, you can look forward to an amazing, fun-filled day complete with games, snacks, crafts and interactive activities, the chance to connect with other members of the neuromuscular community, and opportunities to hear stories and updates from community members, Muscular Dystrophy Canada staff and researchers. All registered participants will also receive a lanyard that can be customized with collectable pins!

And by registering today, you can also get a head start on raising critical funds that will help break down barriers for the neuromuscular disorder community! The funds you raise will ensure that all Canadians living with neuromuscular disorders have timely access to treatments, healthcare and community supports, enabling them to live their best lives, and achieve their goals, whatever they may be! Join us in making an impact today! Register now!

Visit WalkRollMDC.ca today for more information including event locations, dates and to register or donate.

Can’t participate this year but still want to help break down barriers? Please consider donating or hosting your own Walk & Roll event. To make a gift or for more information on hosting your own event visit: WalkRollMDC.ca

Did you know that our equipment application form is now completely online? To learn more about the form, or for support with use please contact Veronique Painchaud, Manager of Programs & Services at Veronique.Painchaud@muscle.ca.

COMMUNITY MEMBERS MAKE A DIFFERENCE IN WAYS THAT MATTER MOST TO THEM

Every year, individuals and groups across the country raise money to support Muscular Dystrophy Canada in their own way by hosting their own special events, including everything from bake sales to bike rides, golf tournaments, dances, auctions, and head-shaving challenges. Each year our community has fun while giving back in all sorts of ways!

Community members like Francois Bernier, who in the summer of 2024 rolled from Montreal to New York City in his wheelchair! Over the course of 10 days, Francois travelled more than 600km by wheelchair, raising more than $20,000 for the neuromuscular community. Through this unique and bold challenge, Francois was able to break down barriers for all Canadians affected by a neuromuscular disorder.

Making a difference can be as simple as riding a bike! In 2014, Jordan Freedman and Hartley Ruch created a cycling event called “Journey for Janice” in honour of Jordan’s mother, Janice Freedman who passed away in 2012, from complications related to polymyositis. For the last nine years, Journey for Janice has grown, raising over $200,000 and hosting close to 90 riders in recent years. Jordan and Hartley have stepped up, year over year, to support the neuromuscular community in ways that matter most to them!

Are you feeling inspired? There’s no time like the present to get fundraising. Hosting your own fundraiser can be a fun and meaningful way to give back to the neuromuscular community. With careful planning, you can help make a real difference in the lives of people with neuromuscular disorders. With commitment and dedication, it is easy to make a difference. For more information, or to get support with your fundraiser, contact Jennifer Williams at JenniferWilliams@muscle.ca.

TOGETHER, WE ARE BREAKING DOWN BARRIERS FOR POST-SECONDARY GOALS!

Thanks to the generosity of our donors, supporters, and Canadian Fire Fighters, students affected by neuromuscular disorders are now one step closer to achieving their dreams of higher education and building meaningful careers. This type of support makes a profound impact, enabling students to attend post-secondary institutions and overcome barriers that might have previously seemed insurmountable.

We are excited to announce that eligible students can now access funds to support their academic journey. These funds can be used for a wide range of essential expenses, including tuition, books, transportation, equipment (such as laptops and iPads), and even attendant fees.

This initiative is not just about financial support – it’s about creating opportunities for individuals to thrive in their education and career paths, regardless of barriers. If you are a student or are enrolling in post-secondary education, we would love to hear from you! Please contact us at Veronique Painchaud at 1-800-567-2873 ext. 4291, or via email at
Veronique.Painchaud@muscle.ca.

We are proud to be part of a community that believes in inclusion, empowerment, and the power of education. Thank you for your continued support in making these goals a reality! We are so excited for the students embarking on their academic journeys and the future they are building.

BRINGING THE NEUROMUSCULAR COMMUNITY TOGETHER TO CONNECT, REST AND SHARE EXPERIENCES

Breaking Barriers – Building Bonds

Thanks to generous supporters, like you, Muscular Dystrophy Canada is thrilled to be hosting more than a dozen retreats in 2025. From Caregiver Retreats to Family Retreats and new this year, hybrid retreats there is something for everyone to enjoy this year. Caregiver Retreats offer anyone taking care of someone affected by a neuromuscular disorder a relaxing weekend away, while Family Retreats are open to the entire family to come together to meet other families from their area and enjoy various activities and entertainment. Hybrid Retreats will offer a combination of both, with opportunities for family activities, as well as caregiver-only sessions. For more information, or to complete the online registration form, please visit here.

“At retreats, families encourage and support each other and there is an unspoken bond that melds us all together. Even though there are many diverse circumstances, we know during that weekend we are all equal; all supporting each other and recharging one another’s batteries. There’s joy and laughter from people whose lives are often an uphill battle. As a family with two young men in wheelchairs, we value the reprieve more than most people will ever realize.”

– Jody and Doyle, who attended a recent retreat with their sons, Jon and Ty.

Policies Lag Behind Progress for Canadians affected by Neuromuscular Disorders, Putting Individuals and their Caregivers at Great Risk

In recent years, Canadians living with a neuromuscular disorder have experienced a remarkable shift in their life trajectories. Advances in disease-modifying treatments and improvements in care standards in addition to expertise shared by people with lived experiences, have turned what were once dire diagnoses into opportunities for extended, fuller lives. Diseases like spinal muscular atrophy (SMA) and Duchenne muscular dystrophy, which once carried poor prognoses, are now considered manageable conditions, enabling individuals to reach adulthood, pursue careers, contribute and participate to and in society. But while science and people with lived experiences have made incredible strides, policies and support systems have failed to keep pace.

A recent Burden of Inherited Neuromuscular Diseases study highlights the gap between medical progress and policies meant to support Canadians affected by neuromuscular disorders. Canadians affected by neuromuscular disorders carry the burden of significant out-of-pocket expenses for essential medical equipment, assistive devices, home care, accessible housing and services that are required to live independently and ensure caregiver safety. This puts the dream of independent living and the right to choose where and how they reside out of reach for far too many.

Take, for example, Crystal Rondeau, a 35-year-old woman in Winnipeg living with SMA Type 2. Despite her incredible resilience and that of family and friends, as well as her tireless advocacy for herself and others, Crystal is forced to live in a hospital due to a lack of proper home care support. Crystal, along with so many others have taught us that their needs are complex and individualized supports are required. Often, these needs cannot be met in a facility or medical setting for the long term. Crystal’s situation is not an isolated one. Across the country, individuals living with a neuromuscular disorder are forced into hospitals or institutional settings—not because of medical necessity, but because of gaps in government support and inadequate funding for necessary home care assistance.

The situation is about more than just financial hardship. It is about dignity and the ability to choose where to live when affected by a neuromuscular disorder. The federal and provincial governments must recognize that providing the right supports is not just a moral obligation—it is an economic necessity. When people like Crystal are forced to stay in hospitals for an extended period of time, it places a tremendous strain on the healthcare system, often costing more than what it would take to fund community-based care and provide the necessary supports at home.

The solution is clear: governments must address the systemic funding gaps that force people with neuromuscular disorders into institutions or hospital beds. We need a comprehensive, universal approach to funding and support that empowers Canadians affected by neuromuscular disorders to choose how and where they live, fully participate in their communities, and ensure the safety of their caregivers.

Medical advancements have progressed, but policy has failed to keep pace. It’s time for decision-makers to act and ensure that Canadians with neuromuscular disorders can live with the dignity, independence, and support they deserve. Crystal and her family have a clear plan for her to return home, but they urgently need financial support for her personal care. This is not about replacing family support—far from it. Crystal’s mother has always been, and will continue to be, a dedicated caregiver. However, like any caregiver, she also needs time to rest and recover.

Despite numerous applications for government assistance and relentless advocacy, Crystal remains stuck in a hospital bed with no indication that the necessary resources will be provided for her to go home. This is unacceptable. The lack of funding for home care forces individuals like Crystal into institutional settings, stripping them of their autonomy and placing unnecessary strain on families. Our governments must act now to remove these barriers and support Crystal’s right to live at home with the care she needs.

Everyday, Crystal and others remind us how living with a neuromuscular disorder can feel like a constant loss of control as their condition evolves. Science has helped, slowing down the progression of some neuromuscular disorders. It is now time for our governments to ensure that Crystal and other Canadians have options, that their caregivers are safe and well. And yes, that they have control of their lives.

Muscular Dystrophy Canada continues to advocate in partnership with Crystal and her family. Medical breakthroughs are on the horizon: now it is time for us to make the policy breakthroughs that will enable all Canadians affected by a neuromuscular disorder to thrive.

Stacey Lintern
CEO, Muscular Dystrophy Canada

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.