News – Muscular Dystrophy Canada

Dr David Green Awards shines the spotlight on outstanding volunteers

Muscular Dystrophy Canada (MDC) is excited to announce the esteemed 2024 Dr David Green Award winners. In the past year, these amazing groups and individuals showed exceptional commitment to improving the lives of Canadians affected by neuromuscular disorders (NMD).

Volunteers have a huge impact on the entire neuromuscular community. Each year, volunteers from all areas of Canada with varying skills, jobs, talents and interests make MDC’s initiatives possible. They share their knowledge and creative ideas, give their time, contribute their experiences, and build positive connections within communities to advance advocacy efforts, push research forward, and deliver essential programs and services.

MDC is extremely grateful to these extraordinary people who are essential in breaking down barriers for the neuromuscular community.

2024 National Dr David Green Award Winners:

Caring Corporate Partner Award
Pfizer Canada
Distinction in Chapter Leadership Award
London Chapter
Dr David Green Impact Award
Sault Ste. Marie Professional Firefighters Association
Dr George Karpati Award for Researcher of the Year
Dr Jodi Warman Chardon
Dr Katie Manders Courage to Inspire Award
Danielle McLeod
Excellence in Service Delivery Award
The Neuromuscular Disease Network for Canada
Fire Department of the Year Award
Ajax Fire and Emergency Services
Fire Fighter of the Year Award
Sean Donovan
Fred Shaddick Community Spirit Award
Journey for Janice
Mary Ann Wickham Award for Volunteer of the Year
Dan Hamel
Outstanding Healthcare Partner Award
Dr Erin O’Ferrall
Outstanding Philanthropist Award
The D & B Atkins Charitable Gift Fund
Rising Clinician/Researcher Award
Dr Cam-Tu Émilie Nguyen
Leadership in Advocacy Award
Alfred Breton-Paré

Discover the full list of
2024 National and Provincial award winners

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!

Moving Research & Discovery Forward – The 2024 Neuromuscular Clinical and Translational Research Grant Recipients

Muscular Dystrophy Canada (MDC) is pleased to announce the recipients of its annual Neuromuscular Research Grants competition. Through these grants, MDC is investing $900,000 into clinical and translational research projects focused on managing healthcare, understanding diagnosis and disease progression, enhancing care, discovering novel treatments and therapies and moving research towards the development of cures.

This year, the funded studies focus on spinal muscular atrophy, Duchenne muscular dystrophy, myotonic dystrophy, dysferlinopathies, limb-girdle muscular dystrophies, immune-mediated myopathies, autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS) and cross-cutting research with findings that will inform a wide range of neuromuscular disorders. Additionally, thanks to the generosity of our supporters, MDC was able to invest $63,630 towards an innovative natural history study led by Dr. Gonorazky on Charcot-Marie-Tooth disease, bringing our investment in research projects close to $1 million.

“These grants fund research across a broad set of neuromuscular disorders, help fill current gaps in the funding landscape, and honour our commitment to increasing opportunities for translational research,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “Of course, this is only possible thanks to our generous donors, incredible supporters, Fire Fighters and volunteers. I’d also like to thank the clinicians and researchers on our Scientific Review Panel, as well our Lived Experience Readers who volunteered their time and expertise in selecting this year’s recipients.”

2024-2025 clinical and translational science research grant recipients:

Dr Haim Abenhaim
Maternal and neonatal outcomes of cesarean deliveries in women with muscular dystrophy

Dr Krista Best
Efficacy of wheelchair skills training to improve mobility for people with ARSACS and DM1

Dr Nathalie Bier
Understanding the impact of central nervous system impairments on daily life in myotonic dystrophy

Dr Rageen Rajendram
Utilizing AI to predict non-invasive ventilation need in neuromuscular disorders: a proof of concept

Dr Karine Choquet
Elucidating DYSF pre-mRNA splicing to inform therapeutic avenues for dysferlinopathies

Dr Lisa Hoffman
Angiopoietin-1 enhances microdystrophin replacement therapy for Duchenne muscular dystrophy

Dr Rashmi Kothary
Maternal transfer of AAV vectors: a minimally invasive approach to deliver SMN-gene therapy for SMA

Dr Keir Menzies
A new in vitro eccentric muscle contraction assay for drug repurposing for muscular dystrophy

Dr Gerald Pfeffer
Single nucleus RNAseq biomarkers in adult-onset muscle diseases

Learn more about MDC’s research investments and the incredible projects that will improve our understanding and drive the development of new treatments and cures for NMDs:

Watch the full Neuromuscular Research
Grants announcement

Current Grants

Looking to connect with MDC’s Research Team? No problem! Contact our Research Hotline at research@muscle.ca

Donors make it possible to invest in both neuromuscular disorder research and care, now and for the future

FOR IMMEDIATE RELEASE – Muscular Dystrophy Canada (MDC) together with the Neuromuscular Disease Network for Canada (NMD4C) are thrilled to announce the recipients of the National Clinical and Post-doctoral Fellowships funding competition. This competition involves an extensive review by leading Canadian neuromuscular researchers and clinicians to ensure the top-ranked candidates are selected for this funding opportunity.

“Too often we hear from our community about the long and difficult process of accessing specialists or that they are unable to find information on their neuromuscular disorder, let alone access to treatments or trials. We know how critical it is to invest in the future generations of neuromuscular disorder specialists to drive research momentum forward and improve the current standard of care available in Canada,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “Together, by providing both Post-doctoral and Clinical Fellowships, we are ensuring the sustainability and progress of Canadian neuromuscular research as well as building a stronger infrastructure of skilled clinicians educated on neuromuscular disorders in Canada.”

These fellowships are made possible each year by the outstanding community of supporters who work tirelessly to support the neuromuscular community. Generous donors, passionate fundraisers and dedicated Fire Fighters across the country make it possible for MDC to fund promising researchers, ensuring Canada is prepared to provide access to new life-changing treatments, while also filling the immediate need for advanced treatment and care options by supporting future clinicians. This is a community effort and we are extremely grateful for the ongoing support. From the entire neuromuscular community, congratulations to all recipients!

Post-doctoral fellowship recipients:

Dr Yassine Ouhaddi
Centre de recherche du CHU Sainte-Justine
Montreal, QC

Dr Cedric Happi-Mbakam
SickKids Hospital
Toronto, ON

Clinical fellowship recipients:

Dr Yiu-Chia Chang
University of Western Ontario
London, ON

Dr Mark Krongold
University of British Columbia
Vancouver, BC

Dr Bram De Wel
University of Calgary
Calgary, AB

MDC and NMD4C extend special thanks to the Canadian Society of Clinical Neurophysiologists (CSCN) for jointly funding a clinical fellow this year.

Learn more about the fellowship awards

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted 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 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