Category: Newsletters

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!

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.