News

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

2022-2023 YEAR IN REVIEW: ANNUAL REPORT HIGHLIGHTS

Accomplishments you made possible last year!

At its annual general meeting, the Muscular Dystrophy Canada Board of Directors officially issued its 2022-2023 Annual Report and what’s abundantly clear, is that thanks to your support we accomplished so much and broke down even more barriers for the neuromuscular community. Thank you!

  • We invested $2 million to fund: nine new clinical and translational science research projects through our Neuromuscular Research Grant Competition; six fellowships; two collagen 6-related dystrophy (Col6-RD) research projects in partnership with CureCMD; and, other projects to ensure the momentum we are seeing in research continues.
  • We partnered with Independent Living Canada, People First Canada, Inclusion Canada, Eviance, the Canadian Association of the Deaf, and the Canadian Council on Rehabilitation and Work to produce Shaping Caada’s Disability Inclusion Action Plan (DIAP), a report that will inform the federal government’s national Disability Inclusion Action Plan.
  • 491 individuals affected by neuromuscular disorders registered with MDC, an increase of 17% over the previous year. To accommodate this growth and provide support, we increased the funds directed towards Mission activities by 11%.
  • We diversified our fundraising by meeting new donors and better understanding their interests, and ensured all donors were being stewarded in ways that were meaningful for them. As a result, MDC increased its total fundraising by $2.6 million over the previous year for a total of $10.7M in revenue.

All of this was possible, because of people like you! Thank you for your commitment to MDC’s mission. We’re breaking down barriers for the neuromuscular community, together, so that sometime soon a breakthrough is made that leads to cures.

BOARD OF DIRECTORS

“I’m excited to welcome Fanny Chagnon, Liz Stirling, Lise Poulin, Nicole Cote and Michael Low to the MDC Board of Directors. Their wealth of knowledge, talents and familiarity with neuromuscular disorders will be invaluable for providing strategic guidance as we continue to break down barriers for the neuromuscular community this year. I am also extremely pleased that Debra Chiabai has stepped into the Chair position,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

New Board Chair Debra Chiabai added, “It has been a great pleasure to be a member of the Board as a Director for the last 13 years, and I am looking forward to stepping into a new role to help guide MDC through the next few years.”

Check out the entire report

QUEBEC JOINS THE RANKS OF PROVINCES SCREENING NEWBORNS FOR SMA

QUEBEC JOINS THE RANKS OF PROVINCES SCREENING NEWBORNS FOR SMA

We are thrilled to announce that spinal muscular atrophy (SMA) has been added to the newborn screening panel in Quebec, a significant milestone for the province and Muscular Dystrophy Canada (MDC). Screening is being integrated now, with full implementation to take place by the end of 2023.

Extensive conversations, collaboration and financial contributions ($583,778) towards the lab program at CHU de Québec-Université Laval, equipment, and building an evidence-based pathway for the early initiation of disease- modifying therapy for individuals with SMA across Quebec, led to this exciting change in policy.

“We couldn’t be happier with the recent news”, said Stacey Lintern, CEO, Muscular Dystrophy Canada. “The addition of SMA to the panel means that infants and families in Quebec will now equitably benefit from the same opportunities as the majority of other Canadians, gaining access to early detection possibly before the onset of symptoms.”

In neuromuscular disorders like SMA, early diagnosis and prompt access to treatments are critical to achieving the best possible outcomes.

“For families, what matters is for their child to have the best chance in life, to be able to do as much as they’re able to do. That is what we can offer with newborn screening for SMA”, said Dr Hugh McMillan, Professor of Pediatrics at the University of Ottawa, Pediatric Neurologist and Neuromuscular Specialist at the Children’s Hospital of Eastern Ontario (CHEO) and Clinical Investigator at the CHEO Research Institute. You can watch Dr McMillan’s video here.

We thank our partner Novartis Pharmaceuticals Canada Inc. as well as donors, clinicians, researchers, families affected by SMA, and Fire Fighters who collaborated with MDC to advocate for the inclusion of SMA on the newborn screening panel.

MDC is currently working with the Maritime provinces to bring newborn screening for SMA to that part of the country. For more information on MDC’s efforts in ensuring all Canadian babies are screened for SMA, visit muscle.ca/services-support/newborn-screening/

If you or a loved one was diagnosed with SMA, MDC has a variety of programs and services for you. Please contact us at 1-800-567-2873 or email info@muscle.ca for personalized support.

RESEARCH TRAINING IS AVAILABLE FOR YOU!

Did you know you could guide research and maximize its findings? It’s true! When you become a patient research partner you will inform research findings and make a difference for the NMD community!
Many incredible NMD community members have generously participated in research initiatives as participants. But now, you can be part of the team and direct research from the inside!

Canadians affected by NMDs, their families, and advocates are often asked to take part in research, but they often feel unprepared to do so. To help you feel ready to become a research team member, Muscular Dystrophy Canada (MDC) in partnership with the Neuromuscular Disease Network for Canada (NMD4C) offers online, self-directed, free training modules through the imPORTND Patient- Oriented Research Training program.

With a ‘nothing about me, without me’ approach, MDC has been working with parent and patient partners on different projects. Most recently MDC, together with researchers from McMaster University, and research teams from Germany and Italy, were selected to conduct collaborative research project looking at the transition experiences from pediatrics to adult care for people with Duchenne muscular dystrophy (DMD) and their families. This project team includes incredible partners with lived experience such as: Doyle Steinke, Nicola Worsfold, Mark Liam Arouza Pai, Gurvir Singh Shergill, Stacy Theofilopoulos, and Andrea Cleary. Become an MDC research partner today, to participate in projects that will have a direct impact on the NMD community.

“As parents of adults with DMD and developmental disabilities, we have lived through a very frustrating transition regarding our boys’ care. From the medical side, the transition to adult care has been reasonable but from the side of caregiving and our role as caregivers, we are not being looked after like we were when the boys were minors. This is a gap that seems to plague the care system. Too many adults with complex needs fall through the cracks during the transition to adulthood. Being directly involved in this research project gives me the opportunity to make positive changes for others in similar situations.”

Doyle Victor Steinke, patient research partner

Interested in becoming a research partner? Contact us at info@muscle.ca, call 1-800-567-2873 or visit muscle.ca/services-support/advocacy/importnd/ to learn more!