Since 1954, Muscular Dystrophy Canada has been the leading charity both working towards finding a cure and providing support for those living with neuromuscular disorders, their caregivers and families, health professionals and researchers. Our vision is to find a cure for neuromuscular disorders in our lifetime and, while we continue to fund ground breaking research, we also understand the importance of ensuring that the day to day lives of our clients are as full and rich as possible. Muscular Dystrophy Canada also works with partners and government at local, provincial and federal levels to influence positive change. This includes improving access to medication, treatments and clinical trials, financial assistance for assistive devices and high quality health/community care.
There are currently 29, 629 registered Muscular Dystrophy Canada clients, 9,964 of whom are individuals living with neuromuscular disorders. Other clients include family members, caregivers, researchers, health care providers and more.
Last year, Muscular Dystrophy Canada funded 813 equipment requests for a total investment of $1,222,471.69 across Canada. This equipment had a total value of $4,962,317.53. Equipment funded for clients helps with mobility, breathing, sitting and positioning, communication, and sleeping.Personal Empowerment Program (PEP)
Adjusting to life with neuromuscular disorders is overwhelming. There’s so much to know and learn about building a new life with a complex disorder. And to make things even more complicated, no two people experience the disorder the same way. A custom approach is needed every time.
That’s where the Personal Empowerment Program comes in! Personal Empowerment Coaches work hand-in-hand with clients as they learn to navigate their diagnosis and life with a neuromuscular disorder. They can provide information on treatments and trials, help clients navigate complex healthcare systems, assist with equipment funding applications, and help connect clients with networks and support systems. Most importantly, Personal Empowerment Coaches provide emotional support, encouragement and mentorship to enhance life skills, self-esteem and coping strategies so clients have the skills to thrive.
Focusing on empowerment, the PEP program touches on three key areas that encourage clients to feel confident and grow by building and expanding their community connections, providing personal freedom through equipment funding and access to vital information. The three areas are:
· Personal Freedom – through our Equipment Program we provide clients with the equipment needed to enhance their quality of life by improving access to school and vocational goals, improving mobility, increasing independence and creating more opportunities for community engagement.
· Community Connections – we empower clients, their family members and caregivers to connect with individuals living similar experiences to provide peer support and help reduce social stigmas. This allows our clients to expand their social network, enhance coping strategies, build life-long friendships, improve their mental health and self-esteem, receive emotional support and foster social activities to enable full community integration. Muscular Dystrophy Canada’s Family & Caregiver Retreats and the MDC Chapters are critical components to community connections.
· Knowledge Transfer – through conferences, network meetings, presentations and educational sessions, and community activities we offer clients an opportunity to build a community of support. We raise awareness of neuromuscular disorders, provide support and information on best practices to prevent complications and disseminate knowledge on new treatments, the latest research and current clinical trials. Network Development is a critical component in enhancing skills, knowledge transfer, individual advocacy, accessing resources and peer support, developing coping strategies and increasing engagement with MDC and their community.
Funding cutting-edge neuromuscular research has always been a priority for Muscular Dystrophy Canada. Research has been and continues to be absolutely essential to our charitable mission.
We focus on supporting research which will:
· Highlight key issues around neuromuscular disorders;
· Uncover new treatments and therapies;
· Improve the resources required by people with neuromuscular disorders to live longer, healthier and empowered lives;
· Ultimately find a cure in our lifetime.
Today, our research program is based on partnerships with other organizations and individuals. Partnering with like-minded organizations allows us to leverage higher investments in research.
As the voice of the neuromuscular community, we continue to advocate to government and decision makers for policy changes and coverage that matters to our clients. We focus our advocacy efforts on access to clinical trials, new treatments and affordable medication.Donate
Your gift today could make all the difference for a family affected by neuromuscular disorders. There are many ways to give including online donations, planned giving, or becoming part of our monthly giving program!
To make a donation, visit www.muscle.ca/donate
There are many ways you can get involved with Muscular Dystrophy Canada.
You can volunteer. Whether it’s through an event like Walk4MD, or participating in a Chapter or Network event, volunteers are the backbone of our organization.
Find more information on how you can make a difference: www.muscle.ca/get-involved/volunteer/
Plan a fundraiser
Every year, caring individuals and groups raise money to support Muscular Dystrophy Canada in their own way by hosting independent events, including bake sales to bike rides, golf tournaments, dances, auctions, and head-shaving challenges.
Learn more about hosting your own event here: www.muscle.ca/get-involved/host-your-own-fundraising-events/
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