Advocacy – 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.

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.

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!

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.

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!

UNWAVERING COMMITMENT: FIRE FIGHTERS AND MUSCULAR DYSTROPHY CANADA CELEBRATE 70TH ANNIVERSARY

Through boot drives and tolls on local roads, community barbeques,
rooftop campouts, car washes, stair climbs and raffles – you name it – more than 600 fire departments, locals and associations across our country work with Muscular Dystrophy Canada every year so they can give all neuromuscular disorders “the boot” in this lifetime.

Fire Fighters have hosted these fundraising events for 70 years to support people affected by neuromuscular disorders.

“When it’s Fire Fighters and MDC together, we’re a family, and we know they need our help. So, when it comes to fundraising, I say, give me a challenge, and I’ll give you my best,” said volunteer Fire Fighter with Middlesex County, Launie Fletcher. Launie has been fundraising with Muscular Dystrophy Canada for 40 years!

Fundraising events also provide Fire Fighters with an opportunity to meet Canadians affected by neuromuscular disorders and see how they’re helping transform lives.

City of Edmonton career Fire Fighter, Courtney Polson added, “Events are just so rewarding for everybody because we see the difference they make. With Muscular Dystrophy Canada, I’ve seen firsthand where the money goes – how it makes a difference in people’s lives.”

To learn more about our 70-year partnership with Fire Fighters or to make a gift of appreciation, visit FilltheBoot.ca.

Muscular Dystrophy Canada’s partnership with Fire Fighters started in
1954

Total amount raised
by Fire Fighters over
70 years:
$103,607,542

2023:
$2.5 million

2024 goal:
$3.2 million

LET’S PARTNER TO ACHIEVE EVEN MORE! TOGETHER, WE HAVE ACCOMPLISHED SO MUCH AND WE KNOW THERE IS MORE TO DO

At Muscular Dystrophy Canada we understand that every community is diverse in its needs and priorities.

Help shape your community’s priorities, set goals, and create important action plans that we can achieve together. We’re inviting people affected by neuromuscular disorders, family members, caregivers, Fire Fighters, donors, healthcare professionals, researchers, and supporters to tell us what is most
meaningful in your local community!

Register and join a town hall meeting near you. If you don’t see a location that is close to you… don’t worry we are only getting started. More communities will be added after these initial consultations are completed. Have questions? Contact us at community@muscle.ca.

Access the registration form and all key dates

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

Thanks to generous supporters, like you, Muscular Dystrophy Canada offers two types of retreats. Caregiver Retreats offer anyone taking care of someone affected by a neuromuscular disorder a relaxing weekend away. And Family Retreats bring the entire family together to meet other families from their area and enjoy various activities and entertainment.

“This retreat changed my life and allowed me to make many new connections. I won’t miss any future retreats. They are so important and life-changing for those of us who have loved ones that struggle with daily life.”

— 2023 Muscular Dystrophy Canada Caregiver Retreat attendee.

Upcoming Family Retreats:

Quebec: September 20-22 | Camp Papillon, Saint-Alphonse-Rodriguez
Ontario: September 20-22 | Camp Fire Circle, Rosseau
British Columbia: October 4-6 | Camp Shawnigan, Shawnigan Lake
Alberta: Date and location coming soon!

Upcoming Caregiver Retreat:

Ontario: October 18-20 | Ramada, Bellville