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!

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.

BREAKING DOWN BARRIERS FOR THE NEUROMUSCULAR COMMUNITY

Muscular Dystrophy Canada’s (MDC) strategic priorities represent a continuing evolution for our organization. They build upon the outcomes and learnings over the last three years, during which time our organization continued to meet the needs of clients through our programs and services, equipment, and system navigation; successfully encouraged governments to change public policy; and, supported translational and clinical research, in addition to, expanding Canadian neuromuscular research infrastructure.

Our investments in research have helped create exciting changes in the Canadian landscape. Whether it was working with our researchers and clinicians facilitating educational webinars, developing resources so our clients have access to credible and clear information, or through our shared work with the Neuromuscular Disease Network for Canada (NMD4C) – our clients are benefiting from early screening and diagnosing, new treatments, trials, and standards of care.

Extending into the next five years, our unwavering focus is on expanding our base of clients to ensure we assist more Canadians with neuromuscular disorders and their families. As well, we remain committed to fiscally responsible spending – ensuring funds raised go to our organization’s mission, and to increasing our fundraising activity to meet the needs of the neuromuscular community.

In addition to our commitment to reach more Canadians affected by a neuromuscular disorder over the next five years, the strategic priorities enable our commitment to ensuring we are innovative, efficient, and inclusive by providing our community the support and information they need to make informed decisions. We will expand our programs and services to engage further with remote and underserved communities, and will provide services in the languages that make up the fabric of our country.

Government policies at the federal, provincial, territorial, and local levels have a daily impact on our community. The next five years will see MDC expand our direct advocacy efforts working in partnership with our community, other like-minded organizations, industry, partners, clients, and government.
Over the next five years we will continue to work with researchers and clinicians to enhance collaborative and proactive strategies to support infrastructure development, capacity building, develop centres of excellence and the sharing of research outcomes that benefit our community.

We will respect that as a diverse community representing a wide spectrum of cultures and experiences, there are different ways of knowing, and of approaching health. We will incorporate this understanding and a respect for the whole person – mind, body, and spirit — in all that we do. We will continue to ensure that all organizational planning and decisions align with our strategic priorities, in addition to ensuring the right measurements are in place to monitor our performance.

Finally, we will not give up the search for more and better ways to work with all our stakeholders. Our clients and their families, staff, donors, supporters, partners, and volunteers are essential members of our community and we are grateful for their support every day.

We are excited about the impact MDC will have during the next five years.

Read our 2023-2028 Strategic Plan

VALUE OF A MONTHLY GIFT

VALUE OF A MONTHLY GIFT

Did you know that every month, you have the opportunity to change the life of someone affected by a neuromuscular disorder?

Making a monthly donation, and becoming an MDC Changemaker is an important and rewarding way to show your support for the neuromuscular disorder community. By pledging a few dollars each month, you can provide ongoing and meaningful support, which makes a huge difference in the lives the persons affected. MDC Changemakers are part of the fabric of the neuromuscular community and their support plays a vital role in driving our work forward and ensuring that Canadians affected by neuromuscular disorders have the tools and resources they need to live rich, full lives.

“Over the years, as my equipment needs have changed, Muscular Dystrophy Canada’s (MDC) support has been indispensable. With the support of donors, MDC helped me get an elevating wheelchair and even provided funding support so my family could afford a van with a power lift. And getting back some independence through this equipment has been life-changing for me. MDC made that possible.”

Alex Harold
  1. It’s convenient: Set it and forget it!
    Monthly giving is a great way to include charitable donations in your budget. Smaller donations that occur throughout the year, are generally more manageable for your personal budget. Plus, MDC issues a single, consolidated tax-receipt to all Changemakers for the full amount of their yearly donation so you don’t have to keep track of each individual gift.
  2. Compounded impact: A little goes a long way!
    A regular gift made over a longer period of time stacks up in terms of total impact. Recurring monthly gifts provide MDC with regular and predictable support that allows us to fund our life-changing programming throughout the year and better predict future cash flows.
  3. Join an exclusive community
    At MDC, our monthly donors are Changemakers; a community dedicated to breaking down barriers for the neuromuscular community. Becoming an MDC Changemaker comes with some exclusive benefits, including:
    • A dedicated MDC staff member to answer your questions and provide support whenever you need it;
    • Members-only webinars, focused on research updates;
    • Email-only quarterly updates to share impact statistics and good news stories;
    • An annual report highlighting how your support of MDC has impacted the neuromuscular community;
    • The feeling of pride at being a part of one of the most important communities within MDC.

Become an MDC CHANGEMAKER today, and help break down barriers for people affected by neuromuscular disorders.

GETTING A CLOSER LOOK AT THE SOCIAL AND ECONOMIC COSTS OF NEUROMUSCULAR DISORDERS

Muscular Dystrophy Canada is proud of our significant contributions to understanding the costs related to living with a neuromuscular disorder (NMD) in Canada. In fact, thanks to your support, we led the first study to examine the societal cost in Canada for six common types of neuromuscular disorders: Duchenne muscular dystrophy, spinal muscular atrophy, myotonic dystrophy, facioscapulohumeral muscular dystrophy, Charcot-Marie-Tooth disease, and myasthenia gravis.

What we learned is although neuromuscular disorders are rare, the total number of people with one of the six disorders mentioned above is considerable, and the total annual cost to society is substantial ($4.6 billion). It also left us wondering, what are the indirect costs for individuals affected and their families: how much time is spent in clinics and hospitals, away from work and school, and how much time and money is spent on travel, medications, rehabilitation, assistive devices and equipment, diagnostics, home therapies and other aspects of life with an NMD.

BIND, is a comprehensive new study funded by CIHR and led by Dr Jodi Warman-Chardon from the University of Ottawa, which will collect information about the hidden and indirect costs of living with any neuromuscular disorder, at any age.

Watch now: Dr Jodi Warman- Chardon leads BIND study:

With new treatments and therapies becoming available in the near future, the BIND study will be leveraged to make informed decisions to influence public policies and healthcare system planning, as well as to shape Muscular Dystrophy Canada’s programming, inform our advocacy work, and help provide information to decision-makers about what families affected by neuromuscular disorders need most.

MDC is also calling on people with myasthenia gravis (MG) to help us map the Patient Journey: What were the first signs and symptoms of MG? How long did it take to get a diagnosis? How is MG managed today?

To participate in BIND or Myasthenia Gravis: The Patient Journey in Canada, please email research@muscle.ca or call 1-800-567-2873 ext. 1114.