Whether you live on the east coast, the west coast, the Prairies or central Canada, MDC is here to support you. We have Service Specialists across the country who will be happy to work alongside you, ensuring you have the information and support you need. Meet Ryanne, our Service Specialist in Atlantic Canada.
“As a Service Specialist I am able to work directly with clients and their families to support them in achieving a wide range of goals and navigation of the healthcare system. When we are able to provide funding towards an essential piece of equipment, we are not only supporting our clients with the financial strain that accompanies living with a neuromuscular disorder, but we are also providing hope for the possibilities of what they will accomplish with this equipment. Being able to provide this kind of support and making positive connections with our families truly is my favorite part about working at MDC.”
“The majority of the disorders we cover are so rare that it can make you feel isolated. It is so important for our clients to understand that is why MDC is here, to ensure you do not have to navigate living with a neuromuscular disorder alone.”
Are you or someone you know living with a neuromuscular disorder? MDC has a wide range of programs and services designed to meet you where you are. Whether it is information on your disorder, helping you with accommodation needs at work or school, navigating the healthcare system, housing or financial issues, or helping you secure equipment – we’re here to help. Visit muscle.ca/services-support/need-help/ to find a Service Specialist near you, or call us at 1-800-567-2873.
Toronto, Ontario – Traveling can be a very stressful event for people using mobility devices and can negatively impact their independence and safety. Far too often, we know critical mobility devices are being damaged in transit impacting a person’s mobility. Muscular Dystrophy Canada (MDC) and AccessNow are partnering to equip travellers with the information they need to plan and advocate for safe and comfortable travel.
Travel inequity is something AccessNow founder and disability activist, Maayan Ziv, has experienced herself.
“It is so important for people with disabilities to be aware and knowledgeable of their rights. Too often there are excuses for why we can’t be accommodated. Knowing your rights is half the battle,” said Ziv. “These incidents continue to happen, so until legislation is passed by the Canadian government, we have to equip people with the information and resources they need to avoid as many problems as possible.”
“We’ve heard far too many accounts from our clients and others about inequitable travel experiences,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “We are committed to better understanding the barriers and working with AccessNow, people with disabilities, the travel industry, government and other stakeholders to address these issues so people traveling with mobility devices have an equitable, positive and safe travel experience. Currently, Canada does not track this information so our first step is to gather data.”
This lack of information makes it difficult for people with disabilities to prepare and make informed travel plans. MDC and AccessNow are committed to working with people with disabilities to gather data, and then develop an Accessible Travel Toolkit that can be used as a guide for persons with disabilities to use to ensure positive travel experience.
We want to hear from you. We’re collecting travel experiences to create an Accessible Travel Toolkit to address the inequities people with mobility devices face when travelling.
Christina was twelve years old when she started to experience weakness in her legs. She struggled to get up off the floor and just climbing stairs became very hard. Sometimes, her legs would give out entirely.
As an active and energetic youth who was involved in many sports, Christina kept making excuses for her sudden change in abilities. “I’m just being clumsy,” or “My legs are just not strong enough”, she said.
As her muscle weakness continued to progress, Christina was referred to a specialist. After several tests and visits, she and her family received life altering news.
Christina was diagnosed with Limb-Girdle muscular dystrophy.
Finally, Christina and her family had the answers they so desperately needed. Initially relieved to finally have an explanation for her change in ability, her diagnosis led to many more questions— questions that no one seemed to have the answers to.
“My parents and I had never heard of neuromuscular disorders before,” she says. “This was a new world to us. There were a lot of questions and tests and doctors weren’t able to give us clear information about what this would mean for me going forward. It was hard to get answers to these really important questions.”
We need your support now to ensure people like Christina and her family have access to the resources they need. Someone to answer questions and to act as a guide along the way. Your gift will help break down barriers.
When a Canadian is diagnosed with a neuromuscular disorder, we know they will need a lot of support and services. But the systems around us – provincial healthcare, private insurance, and government policy – aren’t set up to give that kind of full support. These systems are also difficult for people to navigate. So that’s why we’re here – to fill in the healthcare gaps and help people find their way through these systems.
MDC has a full spectrum of programs, services, and supports for the thousands of Canadians of all ages living with a neuromuscular disorder. Plus, we invest in transformative research to work towards more answers, therapies, and hopefully, potential cures.
Please consider becoming a monthly donor today. Monthly donations provide ongoing support, allowing MDC to be nimble and respond to immediate and urgent priorities – like the needs of our clients and emerging, promising research.
While Christina still doesn’t have all the answers to her questions, she knows that MDC is with her every step of the way and that research plays an important role in her quality of life. Christina emphasizes that even without a cure, the diagnosis itself was crucial.
“As hard as the diagnosis may be, education is one of the most important pieces,” she says. “It is a big step in accepting your diagnosis and leading the best life possible. You will have to advocate for yourself, and being informed is one of the best ways you can do that!”
Please renew your commitment to MDC today by making a monthly gift. Your support helps provide Canadians affected by neuromuscular disorders with answers to their most important questions. By making a gift today, you will provide access to the critical information they need to make informed decisions about their health.
Donors like you make MDC’s support of individuals and families possible. Your generosity today will help eliminate the barriers that keep Canadians affected by neuromuscular disorders from reaching their full potential.
Today, at 35 years old, Christina’s neuromuscular disorder plays a big part in how she moves and operates every single day, but it doesn’t stop her from living her best life. As a self-described social-butterfly who enjoys travelling and going to concerts, Christina credits MDC with helping her have such a positive outlook.
“MDC has played a very important role in who I am today. It has given me the tools to connect with people that are affected like me,” she says. “It has educated me and has made me comfortable in my own skin”.
With your ongoing support, we can help other people affected by neuromuscular disorders achieve their own goals and live their best lives, too.
With your help, we can accomplish incredible things!
Montréal, April 28, 2023 – It is with great enthusiasm that Génome Québec, Ataxia Canada and Muscular Dystrophy Canada announce the launch of the Innovative Therapies for Hereditary Ataxias competition to encourage the discovery and development of new therapies and to mobilize the research ecosystem. The three organizations aim to jointly invest $1M to support projects with a maximum of $330,000 per project for a period of two years.
This competition is open to researchers affiliated with a Québec university and its affiliated institutions (including hospitals and research institutes).
The deadline for submitting the mandatory registration to Génome Québec is June 8, 2023.
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.
Volunteers are the backbone of our organization. They share creative ideas, give their time, and contribute their experiences to help advance advocacy efforts, push research forward, and deliver essential programs and services. MDC is very grateful to have such amazing individuals and groups committed to supporting our mission and the Canadian NMD community.
Toronto, Ontario – Muscular Dystrophy Canada (MDC) is proud to announce an investment of $832,766 to fund nine new clinical and translational science research projects in 2023 through the MDC neuromuscular disorder (NMD) research grant competition, a dedicated Canadian source of funding for neuromuscular research.
“Muscular Dystrophy Canada is a leader in funding ground-breaking research for all neuromuscular disorders. This does two things: first, it lets us advance the global understanding of NMDs and the advancement of more treatments, therapies, and potential cures. And second, our involvement with these research projects means we can get people the most up-to-date information they need,” stated Stacey Lintern, CEO, Muscular Dystrophy Canada.
Drawing on the expertise of Canadian and international reviewers, including neurologists, researchers, allied health care professionals, and people with lived experience, the top projects were identified for funding.
“We held a rigorous peer-review process, and as a result, the projects selected for funding are diverse and potentially high-impact research. The projects cover different neuromuscular disorders and aspects of diagnosis, clinical care, and management and evaluate the impact on muscle function and systems outside of muscles, as well as quality of life,” said Dr. Homira Osman, Vice President, Research and Public Policy, Muscular Dystrophy Canada. She added, “supporting such projects not only contributes to the knowledge base, but it strengthens the Canadian neuromuscular research infrastructure and brings us one step closer to cures.”
The projects submitted this year for consideration were of remarkable quality, and we thank each and every team for their interest in doing this important work. MDC relies on the generosity of Fire Fighters, donors and volunteers to invest in life-changing research, and is honoured to fund the exceptional and bright researchers, clinicians and academics who will lead these nine new projects taking place in hospitals and universities across Canada.
Toronto, Ontario – Muscular Dystrophy Canada applauds the Government of Canada for committing $1.5 billion over three years in support of a National Strategy for Drugs for Rare Diseases to help increase access to, and affordability of, promising and effective drugs for rare diseases to improve the health of patients across Canada.
“MDC works with Canadian Fire Fighters, donors, volunteers and other like-minded organizations to break down barriers for the neuromuscular community. The major barriers that exist for our diverse community, which consists of individuals with rare and ‘ultra-rare’ neuromuscular disorders, are lack of cures and delayed – out of reach treatments. So this announcement is great news for our community,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. She added, “we are excited that this announcement has been made but time is of the essence for many rare diseases and the sooner we can move this from strategy to action, the better it is for our community.”
This long-awaited announcement identified four areas of focus for the national strategy and funding support for provinces and territories to improve access to new and emerging drugs, enhance access to existing drugs, early diagnosis, and screening for rare diseases.
“The areas of focus align perfectly with the work that MDC is already doing such as ensuring early diagnosis and clinical genetic testing. We know access to an accurate diagnosis, coupled with early access to treatments, are important for optimal outcomes and better quality of life,” said Lintern.
“MDC welcomes a strategy where the patient and family are at the forefront and that supports an evidence-based care journey. We are committed to working with our partners like the Neuromuscular Disease Network for Canada (NMD4C) to help make that happen, and bring about better diagnostic tools, support for clinical trials and evidence that supports decision-making. We look forward to a time when the neuromuscular community has access to accurate and early diagnoses, life-changing treatments, and supports regardless of where they live, their age or the rarity of the condition.”
Muscular Dystrophy Canada’s mission is to enhance the lives of persons affected by neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for cures through well-funded research. To learn more about MDC, please visit muscle.ca or call our toll-free number at 1-800-567-2873.
Montreal, February 28, 2023 – It is with great pleasure that Génome Québec, Ataxia Canada and Muscular Dystrophy Canada join forces in order to create a funding program for research on hereditary ataxias.
The goal of this program is to meet the needs of people affected by these rare neurological diseases, to allow them to benefit from genomic innovations and to encourage the development of innovative therapies. This program would support the objectives and orientations of the federal and provincial governments, notably by accelerating therapeutic innovation (Politique québécoise pour les maladies rares) and by presenting a concrete alternative for the creation of new drugs for the treatment of rare diseases (Building a National Strategy for Drugs for Rare Diseases: What We Heard from Canadians).
This partnership will not only mobilize the research community in the field, but also undertake a co-development approach in collaboration with foundations representing people affected by ataxia. This alliance will thus contribute to the democratization of research while increasing public awareness of ataxias.
This program will only be open to Québec researchers; more information will be available in the spring.
Toronto, Ontario – Canadians affected by facioscapulohumeral muscular dystrophy (FSHD) could face substantial delays in accessing clinical trials and any Health Canada approved life-changing treatments and therapies when they become available. Muscular Dystrophy Canada (MDC), the Canadian Neuromuscular Disease Registry (CNDR), and the Neuromuscular Disease Network for Canada (NMD4C) are joining forces to help prevent that from happening.
“Studies show that Canadians have less frequent and timely access to therapies for rare diseases, like FSHD; that very few therapies approved elsewhere in the world are even submitted to Health Canada for regulatory approval; and, that if treatment is approved there is a vast difference in who has access, across the provinces,” said Stacey Lintern, CEO Muscular Dystrophy Canada.
February 24, 2023 – In late January, we became aware of a possible Deflazacort®/Calcort® supply and access issue in Canada. Deflazacort is the most commonly used corticosteroid prescribed in Canada and an affordable option for our Canadian Duchenne muscular dystrophy community. We learned that the problem was primarily due to manufacturer and distributor changes and a need to increase the price.
Muscular Dystrophy Canada and Defeat Duchenne Canada partnered to resolve the issue quickly so a shortage could be avoided, and individuals wouldn’t have to potentially switch to prednisone (as this was a concern brought to us by families). At the same time, together, we worked directly with families to better understand the issue at a local (pharmacy) level.
While the impact did not become widespread, we know of a few Duchenne patients and families directly impacted.
We are pleased to report that a shipment of Deflazacort®/Calcort® arrived last week, and inventory is available for the entire country. There is a price increase (approximately $50 for 60 pills) and a change in format (pills in a box vs. sleeve format).
The new manufacturer has confirmed that the backlog in the market has been solved and will provide this critical product to the Canadian market from now on. We will continue to follow this issue closely as we recognize how vital Deflazacort is for people with Duchenne muscular dystrophy. We look forward to ensuring a sustainable supply of Deflazacort and good access to other approved drugs prescribed for managing and treating neuromuscular disorders in Canada.
If you are still experiencing challenges accessing Deflazacort®/Calcort®, please contact us at research@muscle.ca or call 1-800-567-2873 ext. 1114.
“As a Service Specialist I am able to work directly with clients and their families to support them in achieving a wide range of goals and navigation of the healthcare system. When we are able to provide funding towards an essential piece of equipment, we are not only supporting our clients with the financial strain that accompanies living with a neuromuscular disorder, but we are also providing hope for the possibilities of what they will accomplish with this equipment. Being able to provide this kind of support and making positive connections with our families truly is my favorite part about working at MDC.”
Stacey Lintern
Perry Esler