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.
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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.”
Global Alliance for Myotonic Dystrophy
To raise awareness about myotonic dystrophy and improve the quality of life of people living with the disorder, over 50 myotonic dystrophy-focused organizations from around the world have united to celebrate Myotonic Dystrophy Families Day on July 23, and International Myotonic Dystrophy Awareness Day on September 15.
In addition to the Alliance’s core mission of raising myotonic dystrophy awareness among the general population, this year the focus will also be on raising awareness and education among clinical care teams, and clinical trial readiness for participants.
“Muscular Dystrophy Canada is honoured to work with organizations in the Global Alliance for Myotonic Dystrophy Awareness Initiative. Together we can make a difference,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.
TEN DOWN, THREE TO GO
Manitoba and Quebec latest provinces to embark on newborn screening for SMA
It’s been one year since we started working on making newborn screening (NBS) for spinal muscular atrophy (SMA) a reality for all Canadian babies. Thanks to a partnership with Novartis Canada and your unwavering support – there are only two provinces and a territory left to commit to this life-changing test. This spring, Quebec started planning for newborn screening for SMA, and Manitoba announced it moved from the planning phase to officially screening all babies.
RESEARCH FUNDING IS CHANGING NEUROMUSCULAR LANDSCAPE IN CANADA
Because of generous supporters, like you, nine new clinical and translational science research projects received funding this year. These projects are excellent examples of the high quality, exciting research taking place right here in Canada! We wouldn’t be able to support research like this without YOU.
2021-2022
RECIPIENTS:
Building a screenable human 3D neuromuscular junction model for neuromuscular disorders
Dr. Thomas Durcan
The Royal Institution for the Advancement of Learning/McGill University
Mitochondrial-targeted therapies to improve Duchenne muscular dystrophy outcomes
Dr. Christopher Perry
York University
Genome-wide DNA methylation profile in Duchenne muscular dystrophy
Dr. Craig Campbell
London Health Sciences Centre
(Lawson Health Research Institute)
Measuring balance in chronic inflammatory demyelinating polyneuropathy
Dr. Michael Berger
University of British Columbia
Endurance training as a novel therapeutic strategy for myotonic dystrophy type 1
Dr. Bernard Jasmin
University of Ottawa
QP-OPMD: Quantitative MRI imaging to assess progression in oculopharyngeal muscular dystrophy
Dr. Jodi Warman Chardon
Ottawa Hospital Research Institute
Exploring the impact of spinal bulbar muscular atrophy on persons self-identifying as Indigenous
Dr. Kerri Schellenberg
The University of Saskatchewan
The transition of TEENagers with spinal muscular atrophy to a multi-disciplinary adult program
Dr. Reshma Amin
The Hospital for Sick Children
Motor network connectivity in spinal muscular atrophy: new pathways for intervention
Dr. Maryam Oskoui
The Research Institute of the McGill University Health Centre
Learn more “RESEARCH FUNDING IS CHANGING NEUROMUSCULAR LANDSCAPE IN CANADA”
Meet the Fellows
We’re very excited to share our Meet The Fellows video series with you.
Through these videos, prepared in partnership with Neuromuscular Disease Network for Canada (NMD4C), you’ll learn more about the five incredible fellows who are dedicated to neuromuscular disorder (NMD) care and research.
YOU’RE HELPING MAKE CLASSROOMS A SAFE AND ACCEPTING PLACE FOR ALL
Imagine being the only child in your class who has a neuromuscular disorder. Imagine being the only one who even knows what a neuromuscular disorder (NMD) is.
During a time when being understood, included and involved is critical, classroom environments can be a daunting place for anyone affected by an NMD. Muscular Dystrophy Canada’s AccessAbility program, graciously funded by donors like you, and the Canada Post Community Foundation, is working to change that for students.
Muscular Dystrophy Canada’s (MDC)Service Specialists work with students to develop an accessibility presentation focusing on their unique needs and abilities. This empowers the student to share their abilities with classmates and teachers, provide information to educators so they can expand their knowledge on enhancing accessibility and inclusion in schools, and decrease the negative stigma associated with disabilities.
Learn more “YOU’RE HELPING MAKE CLASSROOMS A SAFE AND ACCEPTING PLACE FOR ALL”
Additions to the Equipment Program Funding!
Additions to the Equipment Program Funding!
Because of donors, like you, MDC has added a substantial list of Assistive Technology to its Equipment funding list.
Assistive technology helps people affected by neuromuscular disorders (NMDs) to improve their health, safety, independence, and t increase their participation in education, the workforce and their community. These devices include; smart watch or wearables for fall detection and medical alert, communication devices, Robotic arm or eating device, Smart door locks and medication dispensers to name a few!
STEP UP FOR THE NEUROMUSCULAR COMMUNITY
The 25th High Rise Challenge takes place Saturday, October 8, 2022. Join us, and hundreds of Fire Fighters, paramedics, police officers and members of the community, as they climb the 36 floors of La Cité de l’énergie in Shawinigan, Quebec – twice – for a total of 1,190 steps.