Break down barriers for people like Christina today!

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.

Donate Today!

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!

Donate Today!

FUNDING FOR INNOVATIVE THERAPIES FOR HEREDITARY ATAXIAS

For immediate release

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.

The goal of this competition is to meet the needs of people affected by these rare neurological diseases, to enable them to benefit from genomic innovations and to encourage the development of innovative therapies. It supports the objectives and orientations of the provincial and federal governments, notably by accelerating therapeutic innovation (Politique québécoise pour les maladies rares) and by supporting research to improve access to affordable and effective drugs for the treatment of rare diseases.

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.

Learn more “FUNDING FOR INNOVATIVE THERAPIES FOR HEREDITARY ATAXIAS”

Celebrating outstanding commitment through the Dr David Green Awards

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.

Learn more about our 2023 award winners.

Funding for first-ever National Strategy for Drugs for Rare Diseases announced

FOR IMMEDIATE RELEASE March 22, 2023

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.”

The full Government of Canada announcement can be read here

-30-

ABOUT MUSCULAR DYSTROPHY CANADA

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.

FOR MORE INFORMATION CONTACT:

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

A Partnership to Fund Research for Hereditary Ataxias

FOR IMMEDIATE RELEASE

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.

Learn more “A Partnership to Fund Research for Hereditary Ataxias”

MDC, CNDR, NMD4C partner to ensure Canadians can access FSHD cure(s)

FOR IMMEDIATE RELEASE February 28, 2023

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.

Learn more “MDC, CNDR, NMD4C partner to ensure Canadians can access FSHD cure(s)”

Community Statement: Update on Deflazacort®/Calcort® Availability

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.

Thank you,

Stacey Lintern
Chief Executive Officer
Muscular Dystrophy Canada

Perry Esler
Executive Director
Defeat Duchenne Canada

Neuromuscular disorders do not discriminate. Nor do they take a break over the holiday season.

Canadians affected by neuromuscular disorders celebrate a variety of different holidays over the winter season, however, amongst this diversity, our community has one thing in common: Often this time of year has added pressures for those living with neuromuscular disorders and their families.

Regardless of where you live in Canada, accessibility issues are amplified in the winter months. Whether it’s the winter storm and unplowed sidewalks that keep you home or the lack of accessible transit making it impossible to celebrate the way you had hoped, those living with neuromuscular disorders can lean on their Muscular Dystrophy Canada (MDC) Service Specialist for support. Service Specialists help navigate individual questions, complex decisions, advocate for change and provide emotional support during difficult moments.

And, thanks to you «our donors» we can answer each call and make a difference together.

Today, I hope you will make a gift to ease some of the pressure of the season for the thousands of individuals and their families, who turn to MDC as a trusted resource and partner in their neuromuscular journey.

Donate Today!

Learn more “Neuromuscular disorders do not discriminate. Nor do they take a break over the holiday season.”

Make an impact for someone like Brody today

As a baby, Brody wobbled when he sat unassisted, and struggled to control his legs when pulling himself into a standing position. Kelli, his mom knew something was not quite right.

And, at 20 months old, Brody saw his first specialist – the start of a three-year journey in search of his diagnosis. After meeting with half a dozen doctors, completing countless medical tests, and travelling hundreds of kilometres across Alberta, Brody was finally diagnosed with Duchenne muscular dystrophy at five years old.

Kelli says, “I don’t think any parent can prepare themselves to hear that their child has a progressive, incurable disease with no remission. It’s the most helpless feeling in the world!”

Through MDC Kelli, Brody and their family now have access to the resources they need. Brody’s school has hosted learning and educational sessions for teachers and classmates with MDC as their partner and as a family, they join our retreats to meet other families affected by Duchenne muscular dystrophy.

Donors make MDC’s support of families possible. Your gift today will provide much-needed support and resources to your neighbours in their time of need.

MAKE YOUR GIFT TODAY

Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.

Because of you, we can partner with families in your community who need it most.

The gift you make today will change lives.

DONATE NOW

Give someone like Elvin the gift of independence

At four years old, Elvin had great difficulty walking and fell down frequently. Concerned, his parents took him to a specialist in Toronto, where he was diagnosed with Duchenne muscular dystrophy.

The youngest of four children, Elvin relies heavily on his family for support with daily activities including bathing, and going up and down stairs. His mom, Doreen has been one of his biggest supporters and champions.

Then, a few years ago, Doreen had a stroke. Devastating to the family, the effects of the stroke mean that Doreen is unable to support Elvin as his primary caregiver. Looking for help, they registered with Muscular Dystrophy Canada (MDC).

Through MDC’s life-changing programs, Elvin now has access to a wheelchair lift allowing him to come and go without relying on his family to carry him up and down stairs. This lift lets Elvin be more independent and gives his family a break from the physical demands of caring for him.

Your gift today will enable MDC to continue helping families, like Elvin’s, enjoy greater independence, and improved quality of life.

MAKE YOUR GIFT TODAY

Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.

Because of you, we can partner with families in your community who need it most.

The gift you make today will change lives.

DONATE NOW