Category: Education

LET’S PARTNER TO ACHIEVE EVEN MORE! TOGETHER, WE HAVE ACCOMPLISHED SO MUCH AND WE KNOW THERE IS MORE TO DO

At Muscular Dystrophy Canada we understand that every community is diverse in its needs and priorities.

Help shape your community’s priorities, set goals, and create important action plans that we can achieve together. We’re inviting people affected by neuromuscular disorders, family members, caregivers, Fire Fighters, donors, healthcare professionals, researchers, and supporters to tell us what is most
meaningful in your local community!

Register and join a town hall meeting near you. If you don’t see a location that is close to you… don’t worry we are only getting started. More communities will be added after these initial consultations are completed. Have questions? Contact us at community@muscle.ca.

Access the registration form and all key dates

BRINGING THE NEUROMUSCULAR COMMUNITY TOGETHER TO CONNECT, REST AND SHARE EXPERIENCES

Thanks to generous supporters, like you, Muscular Dystrophy Canada offers two types of retreats. Caregiver Retreats offer anyone taking care of someone affected by a neuromuscular disorder a relaxing weekend away. And Family Retreats bring the entire family together to meet other families from their area and enjoy various activities and entertainment.

“This retreat changed my life and allowed me to make many new connections. I won’t miss any future retreats. They are so important and life-changing for those of us who have loved ones that struggle with daily life.”

— 2023 Muscular Dystrophy Canada Caregiver Retreat attendee.

Upcoming Family Retreats:

  • Quebec: September 20-22 | Camp Papillon, Saint-Alphonse-Rodriguez
  • Ontario: September 20-22 | Camp Fire Circle, Rosseau
  • British Columbia: October 4-6 | Camp Shawnigan, Shawnigan Lake
  • Alberta: Date and location coming soon!

Upcoming Caregiver Retreat:

  • Ontario: October 18-20 | Ramada, Bellville

Register or learn more about retreats

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.

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!

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.

Post-doctoral Fellowships to advance neuromuscular research

Muscular Dystrophy Canada (MDC) together with the Neuromuscular Disease Network for Canada (NMD4C) are excited to announce the recipients of a funding competition, which awarded national post-doctoral fellowships in neuromuscular research. This competition saw many incredible applicants and involved a thorough and extensive review by leading Canadian neuromuscular researchers to ensure the most promising and top-ranked researchers received the funding.

The fellowship provides salary support for early-career scientists to conduct postdoctoral studies in a laboratory focused on research of NMDs. Successful applicants will receive $40,000 in funding over a one-year period.

“This initiative will assist with training and education for the next generation of neuromuscular researchers and strengthens the biomedical infrastructure to build neuromuscular research capacity in Canada. For our clients, this means we are investing in the sustainability of neuromuscular research which brings us one step closer to finding cures.”

Stacey Lintern, CEO of Muscular Dystrophy Canada

Post-doctoral research fellowship recipients:

Emanuela Pannia, PhD

Research Institute, Hospital for Sick Children

Post-doctoral Supervisor: James Dowling, MD, PhD, Clinician and Senior Scientist, The Hospital for Sick Children

Title of Research: Determining the molecular mechanisms and environmental modifiers of progressive liver disease in X-linked myotubular myopathy.

Overview: The goal of this study is to identify the cause of liver disease in X-linked myotubular myopathy (XLMTM) and the effects of diet and the immune system on its development. This study will be the first to identify causes of liver disease in XLMTM and discover new therapies to help children with this devastating disease.

Talita Conte, PhD

Centre Hospitalier Universitaire Sainte-Justine

Post-doctoral Supervisor: Nicolas Dumont Pht, PhD , Assistant Professor, Centre Hospitalier Universitaire Sainte-Justine

Title of research: Novel strategy targeting dysfunctional muscle stem cells to mitigate Myotonic dystrophy type 1

Overview: The goal of this study is to provide important advancements on the new field of eliminating defective stem cells in Myotonic dystrophy type 1 (DM1) cell cultures, which would restore the function of the remaining muscle stem cells. This advancement would open a new option to DM1 patients.

 

These fellowships exemplify the excellence of future generations of researchers. Generous supporters of Muscular Dystrophy Canada made this funding competition possible. Thank you for making a difference and investing in the future of neuromuscular research.

AccessAbility Program to increase disability and inclusion education in classrooms

FOR IMMEDIATE RELEASE

November 17, 2021 – Today, International Student’s Day, Muscular Dystrophy Canada (MDC) is grateful to announce that Canada Post Community Foundation has provided $25,000 in funding to support an AccessAbility program. This program aims to shift the classroom setting by incorporating information and resources on disabilities, accessibility, inclusion and equity.

MDC’s AccessAbility program will focus on providing information for students and educators about living with a neuromuscular disorder (NMD), how to support individuals affected by a NMD and the development of a digital storybook through which students can share their personal neuromuscular stories.
While the majority of children and youth affected by NMDs have a physical disability, they can also experience sensory, development, hearing and learning disabilities. The unfortunate reality is that a large percentage of students who have disabilities feel like they do not fit in with their peers. This program will educate teachers and peers about living with a neuromuscular disorders while creating a more equitable and inclusive environment for children and youth affected.

“The information that will be shared with students, teachers and staff through the AccessAbility program will make a tremendous difference to increasing inclusion in Canadian schools,” shares Stacey Lintern, CEO, Muscular Dystrophy Canada. “MDC’s hope is for all students and educational staff to feel comfortable, accepted, and fully participate in their learning environment. Thanks to the generous support from the Canada Post Community Foundation, we are one step closer to making this the new reality.”

“The Canada Post Community Foundation is proud to help organizations that are working hard to make a difference in the lives of Canadian children and youth,” said Doug Ettinger, Canada Post President and CEO. “Through the generosity of our customers during our annual campaign, we’re able to fund incredible organizations that are focused on the complex and growing needs of young people in communities across the country.”

About Muscular Dystrophy Canada

Muscular Dystrophy Canada’s mission is to enhance the lives of those affected 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 explore our website muscle.ca or call our toll-free number at 1-800-567-2873.

About the Canada Post Community Foundation

The Canada Post Community Foundation provides grants to Canadian schools, charities and organizations in an effort to make a difference in the lives of children across the country. It supports the small, underfunded projects that often go unnoticed, from coast to coast to coast. Through its grassroots, community-based approach, the Foundation plays a critical role in helping Canada Post achieve its purpose of A Stronger Canada – Delivered. To learn more about the Foundation, visit canadapost.ca/community.

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For more information:

Heather Rice
Director, Marketing and Communications
Muscular Dystrophy Canad
Heather.Rice@muscle.ca
902-440-3714

Feel Good Friday Client Spotlight: Willms Family

For this week’s #ClientSpotlight, we are excited to feature the Willms family! During COVID-19, parents Josh and Alisha have been keeping busy by creating a more accessible bathroom for their son Emmett to use and grow into. They built a roll-in shower, and an accessible sink to give Emmett more independence and safety in the bathroom.

Their main focus is for Emmett to be independent, and to do the things he wants and needs to do without limitations. MDC was happy to provide them the support they needed to make this all possible.

This time still remains uncertain for many Canadians and families impacted by neuromuscular disorders. If you require support, learn about our programs and services, or contact a Service Specialist in your area. We are happy to provide guidance and support.

The Willms family is also spending lots of time outside to enjoy the spring weather. They have been going on lots of walks together and even planted a garden. On rainy days, Emmett has been using his imagination to turn the dining room table into a pirate ship. He uses his stuffed animals as his pirate crew and the whole family searches the house for treasures together.

Thank you for sharing with us, Willms family! We love hearing your stories about how you are keeping busy and how you are using your imagination to have fun!

Our Systems Navigation program is designed to support clients in all areas of their non-medical needs including: funding equipment to improve daily life, providing emotional and educational support, and ensuring access to vital resources and support systems.

We understand that clients want to live life on their own terms. Our program provides them with the right resources to build confidence, and to fulfill their dreams, while ensuring they have increased independence.

Learn more about our programs and services.

Feel Good Friday Client Spotlight: Ken M. Kramer

For this week’s #ClientSpotlight, we are proud to feature Ken M. Kramer, QC. Ken is the Principal & Senior Associate Counsel for KMK Law, and was also the first person with a neuromuscular disorder to lead Muscular Dystrophy Canada as Chair of the Board of Directors.

Ken is an advocate for accessibility and inclusion both in the province of British Columbia and nationwide through various initiatives.

Ken has, and continues to work closely with the media, lawyers across the country, disability groups in British Columbia, senior members with the Ministry of Health, and with the government. A big part of his work is focused on advocacy and helping to develop important policies associated with healthcare and individuals living with disabilities.

“Advocating for people with disabilities is not just something I do as a part of my career—but because I believe in advocacy and promoting inclusion,” says Ken. “I am a strong advocate for myself, and there are others like me. But some don’t have the ability to speak up, so a lot of the things I do are for them.”

Are you interested in advocating in your own community but you’re not sure where to start? Ken shares some advice on how to get started:

“It has to be something that you genuinely believe in,” says Ken “Something you can articulate your thoughts around. It doesn’t need to be sitting with ministers or premiers, but it can result in other methods, like getting associated with an organization that shares your vision or meeting with your MLA—or even writing an opinion piece for your local paper. Everything has an impact.”

Another piece of advice that Ken suggests is to think strategically. “Try not to complain when you provide an issue,” says Ken. “But also come up with a solution. Come up with different options. Find a solution that also has an economic advantage.”

Thank you, Ken, for continuing to use your voice to promote accessibility and inclusion. We can’t wait to see what you will do next to help support individuals living with disabilities.

At MDC, advocacy plays an incredibly important role in delivering our mission. Learn more about the advocacy work that MDC currently supports, and how you can get involved.

COVID – 19: What you should know about this novel coronavirus

Given the recent updates on COVID-19, Muscular Dystrophy Canada has implemented a work from home policy, therefore, effective immediately all MDC offices are closed.

Our staff remain available via email and telephone and will continue to serve our clients, volunteers, donors and other key stakeholders.

During this difficult time, we remind everyone that social distancing is a critical component of reducing the potential harm.

In the coming days, MDC will continue to provide updates as we strive to implement new online platforms and solutions to support our community.

We recommend that everyone continue to be informed by credible sources like the World Health Organization, the Public Health Agency of Canada and provincial health agencies.

Thank you for your continued support and cooperation.

Barbara Stead-Coyle
CEO

COVID-19, is a coronavirus, that is known to cause respiratory infections in individuals who contract the virus. Symptoms include dry cough, fever, tiredness and difficulty breathing, and may take up to 14 days to appear after exposure. Since people with neuromuscular disorders already experience respiratory challenges, it is understandable that you would have concerns and questions about COVID-19.

How to prevent infections

The steps outlined below are good practice, at all times, to inhibit the spread of viruses:
  • Wash your hands thoroughly and regularly with soap and water.
  • Sneeze and cough into your sleeve; when using tissues, immediately put them in the trash and wash your hands.
  • Avoid touching your eyes, nose or mouth.
  • Regularly clean commonly used surfaces and devices you touch.
  • Avoid crowded spaces and close contact with anyone that has a fever or cough.

How you can prepare

You should always have a plan in place should you, or a loved one, become ill. You should have:
  • A list containing the names of your doctors, clinic, pharmacy and insurance company along with contact information.
  • A list of all your medications and the doses.
  • Enough medication for one to two weeks in case you cannot get to the pharmacy to refill your prescriptions.
  • Extra supplies like, hand sanitizers and soap to wash your hands.
For more information please visit the Government of Canada’s website.

How to avoid disruptions to care services for individuals with neuromuscular disorders

  • Screen: Have a sign posted at the entrance of your home for your caregivers and attendants to self-screen and review the precautionary measures they can take while in your home.
  • Greetings: Have your caregivers and attendants say hello without touching (e.g., a wave hello)
  • Wash Hands: Have your caregivers and attendants wash their hands for at least 20 seconds with soap carefully and repeatedly (throughout the day).
  • Sanitize: Have your caregivers and attendants use hand sanitizer (at least 60% alcohol-based) when they arrive at your home and each time prior to touching or feeding you.
  • Disinfect: Have your caregivers and attendants clean, sanitize and disinfect the surfaces that are touched in your and use disinfecting wipes on items that are frequently touched (e.g., cell phones, doorknobs, your wheelchair controls, lifting device controls, and remote controls). Make this convenient by having wipes near the items that should be regularly cleaned.
  • Back Up: If your attendant becomes sick, ask them to seek medical care. Ensure you have sufficient back up attendants in case your caregivers and regular attendants cannot work; your attendants may not be able to work because either they get sick or they need to take care of a family member who is. You will still need assistance, so make sure you have someone who can provide it.

What to do if you think you might have the infection