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.”
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.
Quebec announces policy on rare diseases
Muscular Dystrophy Canada applauds the Quebec government for leading the way towards a rare disease strategy for Canadians by announcing its own rare disease policy.
The Minister of Health and Social Services, Christian Dubé, announced the establishment of the first Quebec policy for rare diseases on June 6, 2022. The policy aims to optimize the accessibility of quality health care and services that are safe, fair, inclusive and adapted to the specific needs of patients with rare diseases and their families.
“This is a great step forward for the rare disease community, and will perhaps motivate other provinces to do the same,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “Having our provinces prioritizing and working on rare disease policies, and collaborating with each other is the next big step towards developing a national rare disease strategy.”
Read the full release
(French only)
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:
If you’d like to take part in the consultations, please contact DIAP Project Co-ordinator Catherine MacKinnon at: diap@ilc-vac.ca
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 LinternCEO, Muscular Dystrophy Canada
647-284-8706
Stacey.Lintern@muscle.ca