Press Releases – Page 3 – Muscular Dystrophy Canada

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

Disability Inclusion Action Plan consultations set to begin in May

Friday, May 6, 2022

Muscular Dystrophy Canada and Independent Living Canada are pleased to announce that consultations for the Disability Inclusion Action Plan, as part of their project “Bridging the Gap: Between a Lived Experiences and Policy: A Community-Led, Capacity Building and Knowledge-Exchange Approach to the Disability Inclusion Action Plan” funded through Employment and Social Development Canada (ESDC), begin this May!

The Pillar Leads together with their supporting organizations have been working diligently to roll-out consultations to ensure we reach out to persons with a lived experience of a disability, individuals with a disability, and hard-to-reach marginalized, intersectional, under-represented groups and stakeholders.

Accessibility is a key priority, and all consultations will be held in an accessible and safe environment.

For more information about the project:

Muscular Dystrophy Canada and Independent Living Canada partner to help lead the development of Canada’s first ever Disability Inclusion Action Plan

If you’d like to take part in the consultations, please contact DIAP Project Co-ordinator Catherine MacKinnon at: diap@ilc-vac.ca

Announcing Muscular Dystrophy Canada’s 2022 Research Grant Competition winners!

We are pleased to share that we are funding nine new clinical and translational science research projects focusing on spinal muscular atrophy, Duchenne and Becker muscular dystrophies, immune mediated neuropathies, congenital myasthenic syndromes, immune-mediated neuromuscular junction disorders, myotonic dystrophy, occulopharyngeal muscular dystrophy, spinal bulbar muscular atrophy (Kennedy disease), and other related neuromuscular disorders.

Thank you to our donors who helped make this possible and to our Research Grant Review Panels of researchers, clinicians and community members with lived experience who volunteered their time to carefully review and help narrow down applications to our final projects.

“Through these exciting projects, these talented and dedicated Canadian researchers will develop new methods for disease diagnosis, uncover novel insight into disease pathogenesis, and develop new treatments options, amongst other meritorious projects,” says Dr. Robin Parks, Chair of the Medical and Scientific Advisory Committee for Muscular Dystrophy Canada (MDC) and Chair of the Translational Science Review Panel. “Through their support of MDC, donors, patients and their families are helping fund outstanding research projects that will move neuromuscular research forward and ultimately improve care and quality of life for those affected by neuromuscular disorders – which aligns with MDC’s mission.”

“We are extremely pleased with breadth of proposals received to our call for clinical and translational science research proposals we received this year. This is a hopeful sign of the continued momentum and progress in neuromuscular research. The nine selected recipients show exemplary innovation, dedication and promise of potential impact for a wide range of neuromuscular disorders,” says Stacey Lintern, CEO of Muscular Dystrophy Canada. “Because of our incredible community, we are able to fill a critical gap in research funding. We know how much change is possible from Canadian researchers and we are continually working with our supporters to ensure we invest in meaningful ways.”

Thank you to the Canadian neuromuscular research community for putting forward impactful applications.

2022-2023 WINNERS:

Dr. Thomas Durcan, MD, The Royal Institution for the Advancement of Learning/McGill University
Building a screenable human 3D neuromuscular junction model for neuromuscular disorders
Dr. Christopher Perry, MD, York University
Mitochondrial-targeted therapies to improve Duchenne muscular dystrophy outcomes
Dr. Craig Campbell, MD, London Health Sciences Centre Research Inc. (Lawson Health Research Institute)
Genome-wide DNA methylation profile in Duchenne Muscular Dystrophy
Dr. Michael Berger, MD, University of British Columbia
Measuring balance in chronic inflammatory demyelinating polyneuropathy
Dr. Bernard Jasmin, MD, University of Ottawa
Endurance training as a novel therapeutic strategy for Myotonic Dystrophy type 1
Dr. Jodi Warman-Chardon, MD, Ottawa Hospital Research Institute
QP-OPMD: Quantitative MRI Imaging to Assess Progression in Oculopharyngeal Muscular Dystrophy
Dr. Kerri Schellenberg, MD, The University of Saskatchewan
Exploring the impact of Spinal Bulbar Muscular Atrophy on persons self-identifying as Indigenous
Dr. Reshma Amin, MD, The Hospital for Sick Children Dr. Aaron Izenberg, MD, Sunnybrook Health Sciences Centre
The Transition of TEENagers with Spinal Muscular Atrophy to a Multi-Disciplinary Adult Program
Dr. Maryam Oskoui, MD, The Research Institute of the McGill University Health Centre
Motor network connectivity in spinal muscular atrophy: new pathways for intervention

WATCH THE ANNOUNCEMENT

Important Update on Phone Solicitations

Muscular Dystrophy Canada does not use telemarketing services. You can support Fire Fighters and help them Fill the Boot for Muscular Dystrophy Canada and the individuals and families affected by neuromuscular disorders by going to filltheboot.ca.

STATEMENT REGARDING PHONE SOLICITATIONS

Several years ago, the Canadian Fire Fighter Curling Association (CFFCA) retained a telemarketing company to assist in fundraising for their annual curling event. A portion of the funds raised in past years were donated to MDC.

Muscular Dystrophy Canada can confirm a campaign soliciting donations for the Canadian Fire Fighter Curling Association has begun, seeking donations that support the Canadian Fire Fighter Curling Association.

In the past, we received complaints regarding the tone and approach of these solicitation calls and brought this to the attention of the CFFCA President.

Should you have any concerns or questions please contact the Canadian Fire Fighter Curling Association directly at cffca.ca.

We sincerely thank all of our generous supporters for making our work possible. Again, to help Fire Fighters #filltheboot go to filltheboot.ca.

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

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.

Muscular Dystrophy Canada and Independent Living Canada partner to help lead the development of Canada’s first ever Disability Inclusion Action Plan

FOR IMMEDIATE RELEASE

Toronto, ON – January 27, 2021 – Muscular Dystrophy Canada (MDC) and Independent Living Canada (IL Canada) are partnering to equitably consult with individuals, organizations and stakeholders across disabilities to help inform the development of Canada’s first Disability Inclusion Action Plan (DIAP).

Beginning in January 2022, this 15-month collaboration will both inform the development of the DIAP in advance of its release, and continue to assess and improve the Plan throughout its implementation. The DIAP will focus on reducing poverty among persons with disabilities, getting more persons with disabilities employment opportunities, and realizing the goal of the Accessible Canada Act to achieve a barrier-free Canada by 2040, making it easier for persons with disabilities to access federal programs and services and fostering a culture of inclusion. Our goal is to ensure all Canadians have the opportunity to provide feedback, express concerns, and share their experiences to make this vital action plan as inclusive and impactful as possible.

With over 100 disability organizations invited to collaborate on this engagement process, IL Canada and MDC were selected to co-lead this project with support and funding from Employment and Social Development Canada (ESDC).

“For The Disability Action Plan to make a real impact in the lives of persons with disabilities, it has to be informed by lived experience. I’m grateful that Muscular Dystrophy Canada and Independent Living Canada will be working with the disability community to determine what barriers are still preventing persons with disabilities from participating in society, and how Canada can remove them to create a more equal, inclusive, and prosperous country” says The Honourable Carla Qualtrough, Minister of Employment, Workforce Development and Disability Inclusion.

IL Canada and MDC look forward to leading this process while ensuring representation from within all areas of disability, including racialized and LGBTQ2S+ communities.

“Independent Living Canada is thrilled to be leading this consultation process in partnership with Muscular Dystrophy Canada, the pillar leads, and individuals affected by disabilities from coast-to-coast to coast. This is a once-in-a-lifetime opportunity to ensure that the voices of marginalized and hard-to-reach people affected by disabilities are provided the opportunity to have their voices heard about what should be included in the first-ever federal Disability Inclusion Action Plan,” says Anne MacRae, National Executive Director, Independent Living Canada.

“Muscular Dystrophy Canada is honoured to work in partnership with IL Canada to consult Canadians affected by disabilities and share these experiences in a method that will drive the implementation of the much needed Disability Inclusion Action Plan,” says Stacey Lintern, CEO, Muscular Dystrophy Canada. “This is a vital action plan which will impact each and every Canadian in some way. We look forward to expanding our person-centred approach and ensuring all voices are heard throughout this process.”

MDC and IL Canada look forward to working with Inclusion Canada, Canadian Council on Rehabilitation and Work, Canadian Association of the Deaf, and Eviance who have been designated as leads for the four respective thematic pillars of the DIAP: Financial Security, Employment, Accessible and Inclusive Communities and a Modern Approach to Disability.

“At Inclusion Canada we are extremely excited about hearing from persons with a disability, their representative organizations and stakeholders across the country as the lead on the financial security pillar of the Disability Inclusion Action Plan,” says Krista Carr, Executive Vice-President, Inclusion Canada. “Hundreds of thousands of people with disabilities in Canada live in poverty and this urgently needs to change. We are looking forward to getting started right away.”

“We are pleased and excited at the funding support for this project. We really look forward to working with our partner organizations in building new bridges to hard-to-reach components of the Deaf, Deaf-blind and disabled communities across Canada,” says Jim Roots, Executive Director, Canadian Association of the Deaf.

“The Canadian Council on Rehabilitation and Work (CCRW) recognizes the capability of persons with disabilities, and supports their choices for equitable and meaningful participation in work. We are proud to be a pillar of change and build up the community by sharing our values, knowledge and commitment to Disability Inclusion and ensuring that there is an equitable approach to disability inclusive design,” says Maureen Haan, President and CEO, CCRW. “We are honoured to be involved in the development of the DIAP as the lead agency of the Employment Pillar. We are excited and motived to ensure this project will bring change and a voice to those with lived experience that remain hard-to-reach and marginalized populations with disabilities.”

“Eviance looks forward to collaborating on this important piece of work, and bringing together the knowledge and diverse experiences of persons with disabilities, to strengthen the federal Disability Inclusion Action Plan,” says Dr. Susan L. Hardie, PhD, Executive Director, Eviance.

About Muscular Dystrophy Canada

About Independent Living (IL) Canada

Founded in 1986, Independent Living Canada is a national non-profit association of Independent Living Centres led by and for people with disabilities who promote the Independent Living Philosophy. IL Canada supports the development of Independent Living Centres, and provides education and leadership for its member organizations, partners and communities.

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Media Contact

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

Important Update on Phone Solicitations

STATEMENT REGARDING PHONE SOLICITATIONS

We have received complaints regarding the tone and approach of solicitation calls. We have brought these to the attention of the President of CFFCA.

Should you have any concerns or questions please contact the Canadian Fire Fighter Curling Association directly at cffca.ca.

We sincerely thank all of our generous supporters for making our work possible. Again, to help Fire Fighters #filltheboot go to filltheboot.ca.