News

First of its kind: New program will increase patient engagement in neuromuscular disorder research

Toronto, Ontario – Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are proud to announce the launch of imPORTND, an online patient-oriented research (POR) training platform.

The imPORTND platform offers online, self-directed, free training modules on how to conduct research that is informed by, and most meaningful to individuals living with neuromuscular disorders. The modules are designed for all members of the study team: including researchers, lab staff, and patient- and family partners.

“Canadians affected by neuromuscular disorders and their families are increasingly asked to take an active role in research, but they often feel unprepared to participate,” said Dr. Homira Osman, Vice President, Research and Public Policy, Muscular Dystrophy Canada. “The training provided through imPORTND will ensure people have the confidence and knowledge needed to be involved in all stages of research: decision-making, design, planning, delivery, evaluation and knowledge mobilization. The modules will help ensure patient and family partners are well-equipped to share their lived expertise, guide discussions and inform decisions regarding health care, research, and therapy development with policymakers, industry and scientists.”

Focused on a ‘Nothing about me; without me’ patient-centred approach, imPORTND was co-developed with a team of expert patient partners, clinicians, researchers, and patient partner organization members, and is the first POR training developed specifically for neuromuscular disorder research.

“When patients and researchers collaborate on projects, the work they co-create is more meaningful and able to make real and positive impacts. Learning to work together is what ‘imPORTND’ is all about. The modules focus on the tools, skills and relationships needed by researchers, patient-partners and clinicians to partner for work that is more inclusive, equitable, diverse and accessible.,” said Dr. Kathryn Selby, Medical Director, Pediatric Neuromuscular Program of BC and the Yukon and Patient-Oriented Resources Lead Investigator at the Neuromuscular Disease Network for Canada.

The neuromuscular community is excited to participate in projects that impact them directly.

“As patient partners, our voices give deeper understanding to neuromuscular conditions, with each one of us sharing our unique lived experiences. Together with medical research teams, we prioritize meaningful timely research that immediately serves to improve quality of life,” said Linda Niksic, NMD4C Patient Research Partner, and contributor to the imPORTND training modules.

Additional information about imPORTND, can be found at importnd.neuromuscularnetwork.ca.

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ABOUT MUSCULAR DYSTROPHY CANADA

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

MEDIA CONTACT

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

$360,000 in fellowships awarded to advance neuromuscular research and healthcare

FOR IMMEDIATE RELEASE January 19, 2023

Muscular Dystrophy Canada (MDC) together with the Neuromuscular Disease Network for Canada (NMD4C) are excited to announce the recipients of a funding competition, which awarded national post-doctoral fellowships in neuromuscular research and clinical fellowships in neuromuscular medicine and electromyography.
This competition saw many incredible applicants and involved a thorough and extensive review by leading Canadian neuromuscular researchers and clinicians to ensure the most promising and top-ranked researchers, and leaders in neuromuscular care, received funding.

“This initiative helps train and educate the next generation of neuromuscular researchers and clinicians. The post-doctoral fellowships help strengthen neuromuscular research capacity, and the clinical fellowships will strengthen the specialist care available to the neuromuscular community,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “For our clients, that means we are investing in the sustainability of neuromuscular research, which brings us one step closer to finding cures, and in skilled clinicians that will provide clinical care to individuals affected by neuromuscular disorders and help raise standards of care.”

Learn more “$360,000 in fellowships awarded to advance neuromuscular research and healthcare”

Neuromuscular disorders do not discriminate. Nor do they take a break over the holiday season.

Canadians affected by neuromuscular disorders celebrate a variety of different holidays over the winter season, however, amongst this diversity, our community has one thing in common: Often this time of year has added pressures for those living with neuromuscular disorders and their families.

Regardless of where you live in Canada, accessibility issues are amplified in the winter months. Whether it’s the winter storm and unplowed sidewalks that keep you home or the lack of accessible transit making it impossible to celebrate the way you had hoped, those living with neuromuscular disorders can lean on their Muscular Dystrophy Canada (MDC) Service Specialist for support. Service Specialists help navigate individual questions, complex decisions, advocate for change and provide emotional support during difficult moments.

And, thanks to you «our donors» we can answer each call and make a difference together.

Today, I hope you will make a gift to ease some of the pressure of the season for the thousands of individuals and their families, who turn to MDC as a trusted resource and partner in their neuromuscular journey.

Donate Today!

Learn more “Neuromuscular disorders do not discriminate. Nor do they take a break over the holiday season.”

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”