Advocacy – Page 5 – Muscular Dystrophy Canada

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:

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

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

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

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 at muscle.ca or call our toll-free number at 1-800-567-2873.

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

AccessAbility Program to increase disability and inclusion education in classrooms

FOR IMMEDIATE RELEASE

November 17, 2021 – Today, International Student’s Day, Muscular Dystrophy Canada (MDC) is grateful to announce that Canada Post Community Foundation has provided $25,000 in funding to support an AccessAbility program. This program aims to shift the classroom setting by incorporating information and resources on disabilities, accessibility, inclusion and equity.

MDC’s AccessAbility program will focus on providing information for students and educators about living with a neuromuscular disorder (NMD), how to support individuals affected by a NMD and the development of a digital storybook through which students can share their personal neuromuscular stories.
While the majority of children and youth affected by NMDs have a physical disability, they can also experience sensory, development, hearing and learning disabilities. The unfortunate reality is that a large percentage of students who have disabilities feel like they do not fit in with their peers. This program will educate teachers and peers about living with a neuromuscular disorders while creating a more equitable and inclusive environment for children and youth affected.

“The information that will be shared with students, teachers and staff through the AccessAbility program will make a tremendous difference to increasing inclusion in Canadian schools,” shares Stacey Lintern, CEO, Muscular Dystrophy Canada. “MDC’s hope is for all students and educational staff to feel comfortable, accepted, and fully participate in their learning environment. Thanks to the generous support from the Canada Post Community Foundation, we are one step closer to making this the new reality.”

“The Canada Post Community Foundation is proud to help organizations that are working hard to make a difference in the lives of Canadian children and youth,” said Doug Ettinger, Canada Post President and CEO. “Through the generosity of our customers during our annual campaign, we’re able to fund incredible organizations that are focused on the complex and growing needs of young people in communities across the country.”

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 muscle.ca or call our toll-free number at 1-800-567-2873.

About the Canada Post Community Foundation

The Canada Post Community Foundation provides grants to Canadian schools, charities and organizations in an effort to make a difference in the lives of children across the country. It supports the small, underfunded projects that often go unnoticed, from coast to coast to coast. Through its grassroots, community-based approach, the Foundation plays a critical role in helping Canada Post achieve its purpose of A Stronger Canada – Delivered. To learn more about the Foundation, visit canadapost.ca/community.

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For more information:

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

Muscular Dystrophy Canada joins forces internationally to impact greater change at home

October 22, 2021 – Muscular Dystrophy Canada has signed a Statement of Intent with Muscular Dystrophy UK, Muscular Dystrophy Australia and Muscular Dystrophy Foundation of South Africa to help break down barriers for individuals living with neuromuscular disorders, worldwide.

“Our organizations share similar missions and values, and face similar challenges and hurdles. By coming together, we hope to share insights, policies and training to have a greater impact on the neuromuscular communities we support,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

The organizations recognize the need to work more actively on equality, diversity, inclusion and accessibility issues, and hope that more organizations will join them in the future.

“By working together on these issues, and sharing learnings with our partners, MDC will be able to more effectively and efficiently create sustainable change here in Canada, and play a role internationally,” added Lintern. “It has been an incredible experience working with these organizations thus far, and I have no doubt that our combined expertise and knowledge will result in positive changes for neuromuscular communities in the near future.”

ABOUT MUSCULAR DYSTROPHY CANADA

FOR MORE INFORMATION CONTACT:

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

Recognizing dedication and passion beyond measure

Muscular Dystrophy Canada (MDC) recognizes and celebrates the contributions of individuals and groups who champion our mission with courage, determination, and passion through the Dr. David Green Awards Program. We are excited to announce the list of our esteemed 2021 award winners. These individuals show extraordinary commitment to raising funds, increasing awareness and advocating for the NMD community, supporting continued research, engaging other community members and building positive connections.

The type of compassion and leadership recognized by these awards is personified in Dr. Colleen O’Connell, MDC’s 2021 recipient of the Outstanding Healthcare Partner award. This award is presented to a physician or clinician for outstanding achievements in improving neuromuscular disorder clinical practice and/or who has played a major or lasting role in improving the quality of life of people affected by neuromuscular disorders and their families.

In the past year, Dr. O’Connell has supported MDC’s knowledge sharing and advocacy initiatives. Particularly, Dr. O’Connell supported MDC with gathering and sharing credible and timely information regarding COVID-19 and NMDs. She has advocated on behalf of patients with NMDs to receive prioritization for vaccination. She also presented at our #LetsTalkNMD webinars, and most recently, she is the chair of transition of care in DMD for an upcoming Duchenne conference. She has supported MDC in many ways and is exceptionally knowledgeable, available and willing to support the NMD community in Canada.

“MDC is incredibly grateful to have so many groups and individuals dedicated to supporting our mission and the NMD community as a whole,” says Stacey Lintern, CEO of Muscular Dystrophy Canada. “From giving their time, contributing innovative ideas, sharing their experiences and helping to advance MDC forward in all areas of our Mission efforts, volunteers are the back-bone of our organization. Thank you doesn’t even begin to cover just how appreciative we are of each and every one of you”.

We are so lucky to have such an amazing group of supporters, including Dr. O’Connell, who continue to support our Mission, challenge us to be better and unite the neuromuscular disorder community. Click here to learn more and see a full list of this year’s award winners.

2021 Award Winners

National collaboration awards funding for newborn screening in spinal muscular atrophy (SMA)

SMA is the leading cause of genetic infant death.
Early diagnosis is imperative to halt irreversible motor neuron loss and disease progression.
More than $700,000 awarded to projects across three provinces.

Toronto, ON, July 21, 2021 – Muscular Dystrophy Canada (MDC) today announced funding for newborn screening projects focused on spinal muscular atrophy from Alberta, Manitoba and Quebec. These are the first applicants to be awarded funds as part of a collaboration with Novartis Pharmaceuticals Canada Inc. (Novartis). This multi-year initiative will see up to $2 million invested, as well as ongoing support for the generation of critical evidence and best-practices to help make newborn screening for SMA a national reality.

“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. Unfortunately, this is not the reality for most Canadian children born with SMA,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “With today’s announcement and the unparalleled commitment of government leaders, Novartis, the SMA community and MDC’s dedicated Board of Directors, Fire Fighters, clients, donors and supporters, we are one 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. While Ontario is currently the only province to screen for SMA, MDC’s goal is to have the disorder added to all provincial newborn screening panels across Canada.

“As the mother of an infant with SMA who was not screened at birth, I know first-hand the devastating implications of delayed diagnosis,” said Laura Van Doormaal, Newborn Screening Advisory Committee member. “Today’s announcement means that one day soon, no matter where they live all families will have the opportunity to make critical healthcare decisions and realize their child’s full developmental potential from the very beginning.”

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. Funded projects include pilot programs and the mapping of post-diagnosis referral pathways. Further details on the needs and readiness assessment, project selection, peer review and community advisory committees can be found here: muscle.ca/newborn-screening

“Our collaboration with Muscular Dystrophy Canada truly exemplifies the Novartis purpose of improving and extending patients’ lives,” said Andrea Marazzi Country Head, Novartis Pharmaceuticals Canada. “We’re honoured to partner on work that will bring lasting impact to the SMA community and healthcare systems across Canada. Time to diagnosis is crucial in SMA and we applaud the first round of funding recipients and all engaged provinces for their commitment to prioritize screening at birth.”

MDC will continue to work with British Columbia, Saskatchewan and the Maritimes to accelerate newborn screening for SMA coast-to-coast. 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

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For more information:

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