News

International research competition results in funding for innovative Collagen 6- related dystrophy research projects

Muscular Dystrophy Canada (MDC) is pleased to announce two Collagen 6- related dystrophy (Col6-RD) research projects will be funded thanks to generous donors, and a partnership with Cure CMD (Congenital Muscular Dystrophy).

Collagen 6- related dystrophies (Col6-RD) are genetic types of muscular dystrophies that include Bethlem myopathy, Ullrich congenital muscular dystrophy and intermediate forms (Limb-girdle muscular dystrophy R22/D2). They are characterized by muscle weakness that can begin in infancy and can affect mobility, breathing, eating and activities of daily living.

Currently there is no cure for Col6-RD and knowledge on how the disorder develops is limited. Research is the essential next step towards therapy development.

Learn more “International research competition results in funding for innovative Collagen 6- related dystrophy research projects”

Make an impact for someone like Brody today

As a baby, Brody wobbled when he sat unassisted, and struggled to control his legs when pulling himself into a standing position. Kelli, his mom knew something was not quite right.

And, at 20 months old, Brody saw his first specialist – the start of a three-year journey in search of his diagnosis. After meeting with half a dozen doctors, completing countless medical tests, and travelling hundreds of kilometres across Alberta, Brody was finally diagnosed with Duchenne muscular dystrophy at five years old.

Kelli says, “I don’t think any parent can prepare themselves to hear that their child has a progressive, incurable disease with no remission. It’s the most helpless feeling in the world!”

Through MDC Kelli, Brody and their family now have access to the resources they need. Brody’s school has hosted learning and educational sessions for teachers and classmates with MDC as their partner and as a family, they join our retreats to meet other families affected by Duchenne muscular dystrophy.

Donors make MDC’s support of families possible. Your gift today will provide much-needed support and resources to your neighbours in their time of need.

MAKE YOUR GIFT TODAY

Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.

Because of you, we can partner with families in your community who need it most.

The gift you make today will change lives.

DONATE NOW

Give someone like Elvin the gift of independence

At four years old, Elvin had great difficulty walking and fell down frequently. Concerned, his parents took him to a specialist in Toronto, where he was diagnosed with Duchenne muscular dystrophy.

The youngest of four children, Elvin relies heavily on his family for support with daily activities including bathing, and going up and down stairs. His mom, Doreen has been one of his biggest supporters and champions.

Then, a few years ago, Doreen had a stroke. Devastating to the family, the effects of the stroke mean that Doreen is unable to support Elvin as his primary caregiver. Looking for help, they registered with Muscular Dystrophy Canada (MDC).

Through MDC’s life-changing programs, Elvin now has access to a wheelchair lift allowing him to come and go without relying on his family to carry him up and down stairs. This lift lets Elvin be more independent and gives his family a break from the physical demands of caring for him.

Your gift today will enable MDC to continue helping families, like Elvin’s, enjoy greater independence, and improved quality of life.

MAKE YOUR GIFT TODAY

Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.

Because of you, we can partner with families in your community who need it most.

The gift you make today will change lives.

DONATE NOW

Support someone like Elude today

For years, Elude complained of pain in his legs that would not go away and after several doctor’s visits, he was diagnosed with oculopharyngeal muscular dystrophy. As his disease progressed, it became increasingly difficult for Elude to complete everyday tasks and his wife, Gaétane stepped in to support.

For more than 30 years, Gaétane has struggled to take care of everything on her own including completing daily chores, caring for Elude and maintaining their home in New Brunswick. Then eight years ago, Elude’s condition deteriorated. Thankfully, one of their nurses told them about Muscular Dystrophy Canada (MDC).

“We asked for help to purchase equipment including a machine that helps to clear Elude’s throat, and mobility devices like a walker and a chair lift,” Gaétane said. Having access to these devices greatly improves Elude’s mobility, giving him greater enjoyment and quality of life.

MDC also supports caregivers, like Gaétane, who receives a few hours of domestic help each week, giving her a much needed break to recharge. Those few hours ensure she is her best self when at home with her husband.

Your gift today will enable MDC to continue delivering life-changing programs that help families, like Elude and Gaétane, enjoy greater independence and an improved quality of life from the comfort of their own home.

MAKE YOUR GIFT TODAY

Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.

Because of you, we can partner with families in your community who need it most.

The gift you make today will change lives.

DONATE NOW

Make a life-changing difference for someone like Lucas

At eight years old, Lucas was diagnosed with centronuclear myopathy (MTM1), which causes severe muscle and lung weakness and greatly affects his mobility. Because of his disorder, Lucas uses a wheelchair, and relies heavily on his family, especially his mom and dad, Sarah and Arnaud, for support with daily activities including personal care and going up and down stairs.

As Lucas got older, and his disorder progressed, it became more difficult for Sarah to lift him to the bathroom or carry him upstairs to his bedroom. Left with the difficult task of modifying their home in Quebec to meet Lucas’ needs, they registered with Muscular Dystrophy Canada (MDC), who stepped in to support these much-needed renovations.

With support from MDC, Sarah and Arnaud equipped their home with an elevating platform and a power lift, providing Lucas with improved mobility and quality of life.

Through MDC’s life-changing programs, Lucas can now move around his home freely without needing to rely on his family as much. This equipment lets Lucas be more independent and gives his family a break from the physical demands of caring for him.

Your gift today will enable MDC to continue delivering life-changing programs that help families like Lucas, Sarah and Arnaud, enjoy greater independence, and improved quality of life.

MAKE YOUR GIFT TODAY

Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.

Because of you, we can partner with families in your community who need it most.

The gift you make today will change lives.

DONATE NOW

Canadians like Johnny need your support now

When Johnny began experiencing weakness and muscle deterioration, he brushed it off as a sign of aging. As an athlete, who enjoyed running and golfed regularly, being diagnosed with Limb-Girdle muscular dystrophy in his late 40’s was life changing for him and his wife, Carla.

At first, Johnny’s biggest issue was climbing stairs, until his disorder had progressed to the point where he not only couldn’t climb stairs anymore but, also had great difficulty standing up and sitting down. Left with the difficult task of modifying their home in British Columbia to meet Johnny’s needs, they registered with Muscular Dystrophy Canada (MDC).

With support from MDC, Carla and Johnny were able to equip their home with several ramps. MDC also provided Johnny with leg braces, which Carla says, “he wears all the time! The leg braces provide him with a lot of support and enable him to do things that he otherwise wouldn’t be able to do.”

Carla and Johnny feel grateful for the support of MDC. Carla says, “all interactions that Johnny has with Sharon [MDC’s Service Specialist in British Columbia] are so kind and supportive. She listens to him, and is so caring. It’s like they’re friends. There is no cure for muscular dystrophy and although we have wonderful doctors, there is no other support for us, other than MDC!

Your gift today will enable MDC to continue delivering life-changing programs that help families like Johnny and Carla, enjoy greater independence, and improved quality of life.

MAKE YOUR GIFT TODAY

Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.

Because of you, we can partner with families in your community who need it most.

The gift you make today will change lives.

DONATE NOW

Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project

Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project

Muscular Dystrophy Canada (MDC) is proud to announce it has joined Clinical Trials Quebec’s Personalized Support Service pilot project.

The new program, developed by Clinical Trials Quebec and powered by CATALIS Quebec, is a free, bilingual resource designed to offer patients and caregivers in Quebec the possibility of finding clinical trials meeting their criteria. The service’s goal is to provide patients and their loved ones with accurate and verified information so they can initiate or facilitate discussions with their medical team about participating in a clinical trial.

Learn more “Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project”

B.C. newborn screening expands; early detection improves quality of life

Muscular Dystrophy Canada is overjoyed that babies born in British Columbia will now be screened for spinal muscular atrophy (SMA). Congratulations to the Government of B.C. on taking this important step that will lead to early diagnosis and treatments that will have life-changing results for individuals and families. Access to the earliest diagnosis will ensure that patients have access to the right treatment and healthcare at the right time, resulting in the best health outcomes for patients.

Celebrating the heart and soul of the Canadian neuromuscular disorder community

At Muscular Dystrophy Canada (MDC) we value the incredible community across the country who champion our mission with courage, determination, and passion. Through the Dr. David Green Awards program, we recognize and celebrate these incredible groups and individuals each year.

We are excited to announce the list of our esteemed 2022 award winners. These individuals show extraordinary commitment to raising funds, increasing awareness and advocating for the neuromuscular disorder (NMD) community, supporting continued research, engaging other community members and building positive connections.

“MDC is extremely fortunate to have such incredible individuals and groups committed to supporting our mission and the Canadian NMD community,” says Stacey Lintern, CEO, Muscular Dystrophy Canada. “Volunteers are the backbone of our organization. They fundraise, share creative ideas, give their time, contribute their experiences and help to advance advocacy efforts, research and programs and services. Thank you doesn’t even begin to cover just how appreciative we are for each and every one of this year’s recipients.”

2022 Dr. David Green Award recipients

CADTH makes final recommendation on adult access to treatment

Muscular Dystrophy Canada (MDC) is deeply disappointed with CADTH’s final recommendation against reimbursement and access to potentially life-changing treatment for adults affected by spinal muscular atrophy.

“It is extremely challenging for patients not to have access to treatments in Canada when real-world evidence shows a treatment can be beneficial,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “While this is not the news we were hoping for, MDC is as committed as ever to breaking down barriers for all Canadians affected by neuromuscular disorders,” “We will continue to advocate and work with government and other like-minded organizations, to influence policy and processes so the neuromuscular community has access to treatments and can make informed decisions concerning treatment options.”