Category: Winter 2023

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!

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.