Category: Healthcare

All Canadians deserve access to life-changing treatments

While therapies exist for spinal muscular atrophy (SMA), many of them are out of reach for adults. Recently, a CTV article featuring Nouma Hammash highlighted the disparity that exists depending on your age, and where you live in Canada.

“For instance, in Quebec and Saskatchewan MDC clients, like Nouma, have access to life-changing drugs. In other provinces and territories that is not the case. Muscular Dystrophy Canada (MDC) urges the government to give all adults access to these treatments because of the incredible outcomes that are possible,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

At a roundtable discussion, attended by twelve individuals affected by spinal muscular atrophy, from across the country, MDC heard that geographic location, age, lack of qualitative data and a piece-meal approach by governments all prevent Canadian adults from accessing treatments that could radically improve their quality of life.

“In a neuromuscular disorder like SMA, access to treatments are critical to achieving the best possible outcomes. For Canadians affected, it can mean the difference in how quickly a condition progresses and as a result, the way they walk, feed themselves and for some even breathe,” said Homira Osman, VP, Research and Public Policy, Muscular Dystrophy Canada.

If you would like to learn more about treatments and how to access them, please contact the Research Hotline at: research@muscle.ca.

You can also find information about access to treatments and submissions to government here: muscle.ca/services-support/advocacy/access-to-treatments

New Ontario-led project to have national impact on newborn screening

Toronto, ON, March 9, 2022 – Muscular Dystrophy Canada (MDC) is proud to announce funding for a first-of-its-kind project to evaluate the cost-effectiveness of newborn screening (NBS) for spinal muscular atrophy (SMA) in Canada, including early treatment. The innovative national project led by a team at the Children’s Hospital of Eastern Ontario (CHEO) will provide vital evidence for policy and decision makers and is expected to help expedite implementation of screening for SMA across the country.

“Discussions on adding new disorders to NBS panels often come down to cost and cost effectiveness: how much will screening for ‘X’ benefit patients and how does that compare to the health system costs? Unfortunately, Canadian health economic analyses are often not available to help answer this question. Our work will generate important information to support newborn screening policy decision making in Canada,” said Dr. Chakraborty, Medical Director of Newborn Screening Ontario (NSO) and project lead.

Today’s announcement is part of MDC’s collaboration with Novartis Pharmaceuticals Canada Inc. (Novartis) to make newborn screening for SMA a national reality. With Alberta and Saskatchewan recently initiating screening for SMA, the focus is now on full-implementation and providing information to support long-term sustainability of all projects.

“Generating this data will not only provide policy and decision makers the evidence they need to make NBS for SMA a national standard, but will also help foster collaboration and exchange of information across the country and can ultimately inform Canada’s Rare Disease Strategy” said Stacy Lintern, CEO, Muscular Dystrophy Canada. “We’re thrilled to be working with Novartis, committed government leaders, the SMA community and MDC’s dedicated Board of Directors, Fire Fighters, clients, donors and supporters to ensure all Canadians have access to the same healthcare, regardless of where they live.”

Access to newborn screening varies widely from province to province. In a progressive neuromuscular disorder like SMA, early diagnosis and prompt access to treatments lead to the best possible outcomes.

“Relocating during pregnancy opened my eyes to the existence of postal code healthcare in Canada,” said Lindsay Williamson, whose son Mason was diagnosed in 2021 with SMA at one month old. “Had we not moved from Ontario for work, our son’s condition would have been promptly picked up during newborn screening. This blood spot would have eliminated the need for a battery of costly medical tests and mitigated the stress of the diagnostic experience. I have no doubt this project will help guarantee families like ours get the information they need from day one.”

Further information on the impact of newborn screening for SMA and the projects funded to date is available at muscle.ca/services-support/newborn-screening/.

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 explore our website or call our toll-free number at 1-800-567-2873.

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For more information:

Heather Rice
heather.rice@muscle.ca
902-440-3714

Newborns in Alberta can get screened for spinal muscular atrophy as part of pilot project with MDC

Statement from Stacey Lintern, Chief Executive Officer, Muscular Dystrophy Canada

February 28, 2022 – On this Rare Disease Day, MDC extends congratulations to Alberta on taking this important next step towards screening newborns for spinal muscular atrophy. Albertans will now have access to early diagnosis and treatments that will have life-changing results for individuals and families. This would not be possible without the partnership of Love for Lewiston for championing this important cause and helping influence positive change. Muscular Dystrophy Canada continues to work diligently with donors, provincial governments, partners and supporters to remove barriers so that screening for SMA becomes a reality across Canada.

If you would like to join Muscular Dystrophy Canada with ensuring Canadian babies have access to timely diagnosis and early access to care and treatment we would welcome your support. To learn more visit muscle.ca/services-support/newborn-screening/

 

Saskatchewan expanding newborn screening for Spinal Muscular Atrophy (SMA)

Statement from Stacey Lintern, Chief Executive Officer, Muscular Dystrophy Canada

Muscular Dystrophy Canada continues to work diligently with donors, provincial governments, partners and supporters to remove barriers so that screening for SMA in Canada is a reality. Growing evidence shows the profound impact newborn screening has on the quality of lives of children born with SMA, and their families. We know that for children affected by SMA, promising outcomes are possible with a timely diagnosis and early access to specialized care and treatment.

We applaud Saskatchewan for recognizing this and expanding their newborn screening panel to include testing for SMA as part of its newborn screening program.

To learn more about SMA newborn screening please visit muscle.ca/services-support/newborn-screening.

If you would like to join Muscular Dystrophy Canada with ensuring Canadian babies have access to timely diagnosis and early access to care and treatment we would welcome your support.

For more information, contact:

Stacey Lintern
CEO, Muscular Dystrophy Canada
647-284-8706
Stacey.Lintern@muscle.ca

Clinical Fellowships support future Canadian leaders in neuromuscular care

Clinical Fellowships support future Canadian leaders in neuromuscular care

Muscular Dystrophy Canada (MDC) together with the Neuromuscular Disease Network for Canada (NMD4C) and Canadian Society of Clinical Neurophysiologists (CSCN) are excited to announce the recipients of the Clinical Fellowship funding competition, which awarded national clinical fellowships in neuromuscular medicine and electromyography.

This competition received many incredible applicants and involved a thorough and extensive review by leading Canadian neuromuscular researchers and clinicians to ensure the most promising leaders in neuromuscular care received the funding.

The fellowship provides $80,000 each in salary support for early-career clinicians to continue their focus on neuromuscular medicine and electromyography.

“Clinical Fellowships will assist with training the future generation of neuromuscular specialists and strengthen the care available to the neuromuscular community in Canada. We know that many of our clients struggle to find neuromuscular specialists to assist and guide their healthcare journey, by investing in the next generation, we hope to reduce this healthcare gap,” says Stacey Lintern, CEO of Muscular Dystrophy Canada. “Together with NMD4C and CSCN, we are building a pipeline of excellence, and investing in top-ranked clinicians that will provide clinical care to individuals affected by neuromuscular disorders and help raise standards of care.”

“We are delighted to have selected top-ranked candidates to receive funding to pursue high-quality clinical training in the field of neuromuscular medicine and electromyography in their respective training institutions,” says Dr. Jodi Warman, Clinician-Scientist and Director of NeuroMuscular Centre, The Ottawa Hospital; Co-Chair of the NMD4C Early Career Working Group. “We are confident each fellow will benefit from the exceptional training programs and that they will positively contribute to the care of patients affected by neuromuscular disease, and at the same time, raise the standard of treatment and access to care for all Canadians.”

 

Dr. Collin Luk

Training Institution: University of Calgary

About Dr. Luk: Collin completed his neurology residency at the University of Alberta, where he is currently completing an ALS Clinical Research Fellowship. His research focuses on understanding the intersection of advanced neuroimaging, neuropathology and the development of biomarkers in ALS.

With support from the National Clinical Fellowship in Neuromuscular Medicine & Electromyography, he will join the University of Calgary in the upcoming year for training in EMG and neuromuscular medicine. This fellowship training will be a crucial component in his career development to becoming a clinician-scientist.

 

Dr. Alasdair Rathbone

Training Institution: University Hospital, London Health Sciences Centre

About Dr. Rathbone: Alasdair was born and raised in Hamilton, Ontario. He attended McMaster University to study Kinesiology followed by Western University in London, Ontario for his medical degree. He is currently completing his Physical Medicine and Rehabilitation residency at Queen’s University in Kingston, Ontario.

He has been interested in electrodiagnostics, neuromuscular medicine and pain management since early in his training. In residency, he has developed skills in interventional pain management and electrodiagnostics. He is excited to undertake fellowship training to improve his skills in neuromuscular medicine. His research interests have focused on myofascial pain syndrome and quantitative EMG.

Outside of work he is passionate about music (as a long time saxophone player), plants (he has over 100), playing hockey, history and spending time with his wonderful partner. He hopes to return eventually to Kingston to practice.

 

Dr. Marianne Nury

Training Institution: University Hospital, London Health Sciences Centre

About Dr. Nury: Marianne obtained her medical degree from Université Laval. She then chose to specialize in physiatry at Université Laval. Throughout the program, she was actively involved in extra-curricular activities and improving the curriculum. She also participated in many research projects, notably with patients with spinal muscular atrophy.

Marianne also has experience with the practice of physiatrists in Fredericton and Victoria, where she discovered and developed her keen interest in neuromuscular diseases, since it aligned with her goal of improving patient’s quality of life.

This fellowship funding is an incredible opportunity that will allow her to continue her advanced training in EMG and to be actively implied in the therapeutic management of patients affected by neuromuscular disorders, as well as participating in research in this field. Following her training, Marianne will return to Québec city to practice neuromuscular medicine and aims to optimize the care of patients in the region.

These fellowships exemplify the excellence of future generations of clinicians. Generous supporters of Muscular Dystrophy Canada made this funding competition possible. Thank you for making a difference and investing in the future of neuromuscular care in Canada.

Screening newborns for spinal muscular atrophy closer to reality in the Maritimes

  • Spinal Muscular Atrophy (SMA) is the leading cause of genetic infant death.
  • Early diagnosis is imperative to halt irreversible motor neuron loss and disease progression.

Toronto, ON, November 18, 2021 – Muscular Dystrophy Canada (MDC) today provided $414,000 to assist the Maritimes in evaluating methodology that would support readiness to add spinal muscular atrophy to their newborn screening panel. The Maritime Newborn Screening Program (MNSP), based at the IWK Health Centre but servicing Nova Scotia, New Brunswick and Prince Edward Island, was awarded the funds through a collaborative initiative between MDC and Novartis Pharmaceuticals Canada Inc. (Novartis).

“In a neuromuscular disorder like SMA, where time is of the essence, early diagnosis and prompt access to treatments are critical to achieving the best possible outcomes. Sadly, most provinces are not yet screening for this treatable disorder,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “I thank the healthcare leaders at MNSP, Novartis, the SMA community and MDC’s dedicated Board of Directors, Fire Fighters, clients, donors and supporters, for getting us another step closer to ensuring all Canadian newborns are screened for SMA.”

Newborn screening is a test done for babies shortly after birth to look for treatable diseases that usually show no symptoms in the newborn period.

In order to ensure an evidence-based approach to funding, MDC and Novartis commissioned a readiness assessment to evaluate the feasibility of adding SMA to all provincial and territorial screening panels. Proposals were then evaluated by an independent international peer review committee under MDC’s guidance. Further details on the needs and readiness assessment, project selection, peer review, community advisory committees and video overview can be found here: muscle.ca/newborn-screening/.

“We’re honoured to partner on work that will bring lasting impact to the SMA community and healthcare systems across Canada,” said Andrea Marazzi, Country Pharma Organization Head, Novartis Pharmaceuticals Canada. “Time to diagnosis is crucial in SMA and we applaud the Maritimes for their commitment to prioritize screening at birth.”

Newborn screening for SMA currently only takes place in Ontario, but projects are now underway in Alberta and Manitoba as well. Future phases of the national collaboration will include additional project funding, evaluation of projects and knowledge transfer, and exchange with stakeholders to ensure policy adoption across all provinces and territories.

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 explore our website or call our toll-free number at 1-800-567-2873.

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For more information:

Heather Rice
Director, Marketing and Communications
heather.rice@muscle.ca
902-440-3714