Category: Newsletters

Opening Doors: Navigating University with Neuromuscular Conditions

Choosing the right university or college is always a big decision, filled with considerations about programs, campus life, and future goals. But for students living with neuromuscular conditions, the decision becomes even more complex, as accessibility and support services are crucial to their academic success and well-being. The problem? There isn’t a centralized place where students can easily find information about the services, supports, and accommodations available at post-secondary institutions across Canada.

To address this gap, Muscular Dystrophy Canada is collecting data on a wide range of accessibility aspects, including physical spaces such as accessible classrooms and building, note-taking services and support for class materials, class structure and accommodations tailored to individual needs, residence options that cater to accessibility and personal care needs, transportation availability to and from campus, testing and exam accommodations for fair assessment, and washroom facilities and other essential amenities for universities and colleges across Canada.

What We Heard

In addition to gathering this data, Muscular Dystrophy Canada connected with students living with neuromuscular disorders who are currently enrolled in post-secondary institutions. We learned that:

  • Many students are restricted in their selection of institutions due to their medical and accessibility needs.
  • While some accommodations, like note-taking services meet basic needs, many students have additional unmet needs that negatively impact their academic performance and overall success.
  • Inadequate accommodations provided by universities and colleges force students to pay out-of-pocket for extra support, adding a significant financial burden.
  • Students with neuromuscular conditions often find there is limited financial assistance specifically tailored to their unique circumstances.
  • Many university and college accessibility services lack sufficient knowledge about neuromuscular conditions, which limits the support available.
  • Attendant care services are a critical and valuable resource that significantly enhances the experience of students with neuromuscular conditions. These services provide essential daily living support.

If you or someone you know is attending a post-secondary institution while managing a neuromuscular condition, Muscular Dystrophy Canada is here to help. We are dedicated to connecting you with the right resources and providing the information and support you need to reach your academic goals. Plus, thanks to the generosity of our donors, funds may be available to support post-secondary students—reach out to research@muscle.ca to learn more!

YOU’RE MOVING RESEARCH FORWARD

Muscular Dystrophy Canada is the only dedicated source of funding for neuromuscular research in Canada. Because of donors, volunteers, Fire Fighters and incredible supporters, like you, we invested $900,000 into nine clinical and translational research projects through the Neuromuscular Research Grants Competition this year. Thanks to your generosity, we also invested $63,630 towards an innovative study led by Dr Gonorazky on Charcot-Marie-Tooth disease, bringing our research investment for this year closer to $1 million.

In recent years, neuromuscular research has undergone significant transformations, leading to changes in clinical standards, improved diagnoses and breakthroughs in treatment discovery. Continued investment in research is key to keeping and accelerating this momentum moving forward.

“We want 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.”

— Stacey Lintern, CEO,
Muscular Dystrophy Canada.

See the full announcement

UNWAVERING COMMITMENT: FIRE FIGHTERS AND MUSCULAR DYSTROPHY CANADA CELEBRATE 70TH ANNIVERSARY

Through boot drives and tolls on local roads, community barbeques,
rooftop campouts, car washes, stair climbs and raffles – you name it – more than 600 fire departments, locals and associations across our country work with Muscular Dystrophy Canada every year so they can give all neuromuscular disorders “the boot” in this lifetime.

Fire Fighters have hosted these fundraising events for 70 years to support people affected by neuromuscular disorders.

“When it’s Fire Fighters and MDC together, we’re a family, and we know they need our help. So, when it comes to fundraising, I say, give me a challenge, and I’ll give you my best,” said volunteer Fire Fighter with Middlesex County, Launie Fletcher. Launie has been fundraising with Muscular Dystrophy Canada for 40 years!

Fundraising events also provide Fire Fighters with an opportunity to meet Canadians affected by neuromuscular disorders and see how they’re helping transform lives.

City of Edmonton career Fire Fighter, Courtney Polson added, “Events are just so rewarding for everybody because we see the difference they make. With Muscular Dystrophy Canada, I’ve seen firsthand where the money goes – how it makes a difference in people’s lives.”

To learn more about our 70-year partnership with Fire Fighters or to make a gift of appreciation, visit FilltheBoot.ca.

Muscular Dystrophy Canada’s partnership with Fire Fighters started in
1954
Total amount raised
by Fire Fighters over
70 years:
$103,607,542
2023:
$2.5 million
2024 goal:
$3.2 million

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

WALK & ROLL SEASON HAS OFFICIALLY STARTED

A huge thank you to everyone who participated in one of the 23 events this Spring. Whether you donated, volunteered, hosted your own event, or attended an event as a participant, THANK YOU for supporting the Walk & Roll for Muscular Dystrophy Canada and for helping to break down barriers for the neuromuscular community. And while we might be halfway through the season, there is still plenty of time to register for the Fall events.

Upcoming Walk and Roll’s include:

  • September 7 – Jonquiere, QC
  • September 8 – Belleville/Kingston, ON
  • September 22 – Calgary, AB & Vancouver Island, BC
  • September 29 – Toronto, ON

TBD:

  • Sherbrooke, QC
  • Surrey/Burnaby, BC
  • Grande Prairie, AB

At each Walk & Roll you’ll enjoy an amazing day filled with fun, community, and support for the neuromuscular community. Join us and help break down barriers for Canadians affected by neuromuscular disorders. Register today at WalkRollMDC.ca

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