Category: Advocacy

New locations added to 2024 Walk and Roll for Muscular Dystrophy Canada

FOR IMMEDIATE RELEASE

Toronto, Ontario – Spirits are high as Canadians from coast to coast to coast get ready to walk and roll starting May 11 to raise funds and break down barriers in support of their friends, families and neighbours affected by neuromuscular disorders (NMDs).

The Walk and Roll for Muscular Dystrophy Canada (MDC) takes place in more than 30 communities across the country from May to October to raise critical funds to break down barriers for the neuromuscular disorder community, and ultimately find cures. Due to interest, events in Burnaby and Surrey, BC have been combined into one bigger celebration and new events have been added in Grande Prairie, AB and Sherbrooke, QC.

The goal is to raise $1.3 million.

“The Walk and Roll for MDC is a critical fundraising event. The funds raised by participants are invested in ground-breaking research, ensuring Canada is prepared to provide access to new life-changing treatments, while also filling the immediate need for treatment and care options,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

Dr Jodi Warman Chardon, Clinical Scientist in the Department of Medicine at the Ottawa Hospital added, “For many disorders, there isn’t a treatment yet, but MDC-funded research gives people true hope. We’ve made incredible discoveries in the last few years, and they’re just going to accelerate.”

Lintern continued, “Walk and Roll for MDC fundraising ensures that when someone needs vital equipment to help live their best life – or even save their life – they won’t have to struggle. Every dollar raised helps MDC deliver a variety of services for all Canadians while also raising the neuromuscular community’s voice and improving access to key decision-makers who can address gaps in the healthcare system.”

But Walk & Roll for MDC is more than a fundraiser. It is a fully accessible community event that is fun for families, friends, businesses and colleagues. It’s a chance for individuals and families to break down barriers together, connect with others who have similar experiences and share their learnings and words of support. It’s a chance for Fire Fighters to connect with the families they help all year long and for members of the research community to hear about individuals who have accessed treatment or therapies.

When you register or donate to the Walk and Roll for MDC, you are breaking down barriers for thousands of Canadians right now – while also giving hope to future generations. For more information on locations, to donate or register visit, WalkRollMDC.ca.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those 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 Muscular Dystrophy Canada, visit muscle.ca or call 1-800-567-2873.

FOR MORE INFORMATION CONTACT:

Heather Rice
Director, Marketing & Communications
Heather.Rice@muscle.ca
902-440-3714

MDC AND PARTNERS LAUNCH CENTRAL HUB FOR NMD SPECIALISTS – A CANADIAN FIRST!

Have you ever looked for a healthcare professional who specializes in the specific neuromuscular disorder (NMD) affecting you or a loved one? If your response is ‘yes’, you share a common experience with many Canadians who frequently seek healthcare professionals experienced in their specific condition. In fact, the second most frequently asked question to MDC’s Research Hotline in 2023 was about finding physiotherapists, occupational therapists, physical medicine and rehabilitation physicians, speech-language pathologists, surgeons, and respirologists with expertise in neuromuscular conditions. This valuable information wasn’t centralized in one location—until now!

For the first time ever all healthcare professionals in neurology or other disciplines focused on NMDs in Canada can connect. The new Canadian Neuromuscular Community of Practice not only helps identify healthcare professionals involved in neuromuscular care, but it also makes it easy for all professionals to learn together, exchange information and broaden their overall knowledge of NMDs!

THANKS TO MDC’S DONORS AND PARTNERS, THE COMMUNITY OF PRACTICE WILL BREAK DOWN BARRIERS FOR THE NMD COMMUNITY BY:

WHICH WILL …
• Making it easy to share information on NMDs • Provide timely references to appropriate specialists
• Continually training and educating • Improve Canadians access to reliable information
• Opening access for peer-to-peer support • Strengthen the level of NMD expertise in the Canadian medical community
• Allowing for collective problem solving and faster access to experts for advice • Reduce the time it takes to receive effective care
• Providing access to more NMD experiences • Improve access to clinical trials in Canada
• Improving Canadian clinical trial readiness and access

Are you a client looking for neuromuscular disorder information or specialists? Are you a healthcare provider looking to join the community of practice or share information? The Canadian Neuromuscular Community of Practice team is happy to help! Contact research@muscle.ca!

The community of healthcare professionals supporting the Canadian Neuromuscular Community of Practice are (pictured from left to right) Dr Warman-Chardon, Dr Lochmüller, Dr Gagnon, Dr Campbell, Dr Schellenberg, Dr Mah, Dr O’Connell, Dr Rodrigue and Dr Plamondon.

TOGETHER, WE’RE HELPING BREAK DOWN BARRIERS FOR CHILDREN WITH NMDS

During a time when being understood, included and involved is critical, classroom environments can be a daunting place for anyone affected by a neuromuscular disorder (NMD). Did you know Muscular Dystrophy Canada (MDC) offers tools to help educate a wide range of audiences on specific NMDs? These activities are tailored to open the conversation around disability and inclusivity.

  • ‘Why are children with NMDs often tired?’‘Why use a scooter in theschoolyard, but not inside?’ Muscle Facts presentations provide schools with a better overall understanding of neuromuscular disorders. MDC staff join students and teachers to share information about NMDs and specific conditions experienced by students in the community, symptoms, equipment and why it’s used, and so much more! This presentation is a great opportunity for open discussion to improve the classroom experience for all.
  • Not all educational staff have experience teaching students affected by NMDs. It can be overwhelming and you might not know where to start or how best to support that student. Don’t worry! MDC staff are here for educators too. Lunch and Learn sessions offer a great opportunity to learn about an NMD affecting a student and brainstorm ideas to promote an inclusive school environment. These sessions also help staff adapt their teaching, activities, or school to ensure the child’s needs are met.
  • Every child has their own way of doing things. AccessAbility workshops promote awareness and understanding of people with disabilities by focusing on their abilities, using games and adapted communication techniques. Sponsored by the Canada Post Community Foundation, these workshops address not only NMDs but any type of disability, and focus on six main areas of development: function, family, fitness, fun, friends and future.

“It truly takes someone who understands not only NMDs but also a young student’s mind to be able to speak with them in a relatable and understandable way. My main concern going into this presentation, at my son Neema’s school, was how he would react and feel. But it was unfounded because the presentation focused on neuromuscular disorders, and how it affects every day life,” shared Natalija Manigoda. “I like how the students were completely engaged because the presentation was fun and interactive. I was pleasantly surprised by how many students had great questions. It was an incredible teaching moment that clearly explained how these disorders affect student life.”

Connect with MDC to set up a presentation that works for you! Email us at info@muscle.ca or call toll free at 1-800-567-2873. Find an MDC Service Specialist near you.

WE HEARD YOU: BREAKING DOWN THE BARRIERS OUR COMMUNITY EXPERIENCE MOST

At the 32 Walk & Roll events that took place across the country last year, we surveyed participants to learn more about the barriers persons affected by NMDs face every day. From this feedback, it was clear our community encounter many challenges when it comes to receiving an accurate and timely diagnosis, accessing equipment and treatment, and finding specialists knowledgeable about the specific NMD that affects them or their family member.

Armed with feedback directly from the Canadian NMD community on what barriers impact them most, this year we are focusing our advocacy efforts on:

YOU ARE BUILDING THE FUTURE OF RESEARCH AND CARE

MDC together with the Neuromuscular Disease Network for Canada (NMD4C) are thrilled to announce the recipients of the National Clinical and Post-doctoral Fellowships competition.

These fellowships are made possible by YOU. They are funded by generous donors and incredible partners like Fire Fighters across the country. Congratulations to Dr Yassine Ouhaddi, Dr Cedric Happi-Mbakam, Dr Yiu- Chia Chang, Dr Mark Krongold, and Dr Bram De Wel.

Learn more

FIRE FIGHTERS IGNITE JOY AND MAKE LASTING CONNECTIONS

Fire Fighters go above and beyond in more ways than we can count!

For almost seven decades, dedicated and passionate Fire Fighters across Canada have been supporting the neuromuscular community in a variety of ways. They raise important funds through boot drives, rooftop campouts, stair climbs and other activities. But, did you know they also give their time at MDC events to connect with the community throughout the year?

In 2023, local Fire Fighters and their service dogs volunteered for MDC’s Alberta Family Retreat, putting a huge smile on everyone’s face! At our Quebec Family Retreat, families enjoyed various activities and entertainment, including Fire Fighters showing kids of all ages (even kids at heart) their truck. Fire Fighters also took part in several Walk and Roll for MDC events last year.

These are only a few examples of the incredible support, dedication and interest Fire Fighter partners offer the neuromuscular community year-round. We are so grateful for their commitment and all they help accomplish! To learn more about how Fire Fighters
support the NMD community visit filltheboot.ca

CELEBRATING VOLUNTEERS AS THEY CHAMPION CHANGE ACROSS CANADA

MDC is incredibly thankful to have volunteers who demonstrate extraordinary commitment to raising funds, increasing awareness and advocating for the NMD community, and supporting continued research. Volunteers give so much, in so many ways, it’s hard to express how appreciative we are for their dedication. One way MDC shows our gratitude and celebrates the contributions of all volunteers is with the annual Dr David Green Awards. Last year, we were very excited to celebrate some of these amazing people and organizations in front of their peers at MDC’s Champions of Change conference in November 2023 with the presentation of their awards. Thank you to every single person who gives their time, thought, skills, connections and passion to help support the Canadian neuromuscular community.
Want to change a life? Consider volunteering at MDC today!

MYASTHENIA GRAVIS JOURNEY MAPPING: AN INSIDE LOOK

In 2023, Muscular Dystrophy Canada (MDC) conducted a journey mapping initiative for Canadians with myasthenia gravis (MG), a rare autoimmune neuromuscular condition. While some treatments are available for MG in Canada, there remains many challenges and unmet needs. We recognized these recurring roadblocks and difficulties in the diagnosis process for our MG clients, and wanted to capture this information so we would know how best to support this community.

We sought to examine the journey from time of most bothersome symptoms, to diagnosis, to treatment, to post-diagnosis. So, we asked individuals affected across Canada to participate in surveys, interviews and roundtable discussions related to their experiences with their diagnosis, treatment, information provided and day-to-day life.

Our goal was to capture the clinical, attitudinal, cost and informational journey including time to diagnosis, diagnostic experience, treatment, emotions during each stage of their journey, and pressure points. The MG journey map below illustrates a person’s needs, processes they follow, and perceptions and emotions they have throughout their healthcare journey. Information is key, knowing where the challenges are means we know exactly where we need to support our community!

Want to learn more about the MG Journey Mapping project?

Visit: muscle.ca/services-support/advocacy/journey-mapping/ to watch the results video and see the MG Journey map.

Mark got what he needed to get back outside and explore nature!

“My son is a 14 year old boy with DMD who was diagnosed when he was just one and half. Despite the physical limitations, Mark loves nature and outdoor time. But, we have to closely monitor the steps he takes so that he is not overexerting himself which will result in muscle cramps or even permanent damage. So sadly, we had to press pause on some outdoor activities until we could get him a manual wheelchair. It was not easy to find a good sized wheelchair for him to use safely outside. The health insurance only covers some portion of the cost for the customized chair we got for him. MDC reached out the helping hand as soon as they got to know about our needs and provided incredible support mentally, emotionally and financially. Thanks to MDC, our son can now go out and enjoy the fresh air of the forest with more mobility and independence. Life doesn’t have to be perfect to be wonderful. MDC’s life-changing support always comes at the perfect time and makes our lives better. We know there are so many heroes with capes working very hard to support us and other families in need.”

Mandy Liu, ON