Don’t Forget Me This Holiday Season

The world is a scary and lonely place right now. Due to the global pandemic, we are isolated from our friends and family. Our routines have completely changed. We aren’t able to do the things we love and visit our favourite places. This is what life is like, every day, for many individuals affected by neuromuscular disorders.

My name is Warren. I’m a husband, a father, an advocate and so much more. I also have Becker’s Muscular Dystrophy. I wanted to share my story with dedicated donors, like you, because you’re having a profound impact on the lives of so many people affected by neuromuscular disorders – in ways that you may not even realise. And for that you deserve much gratitude and thanks.

I was eighteen years old before I was diagnosed. As frustrating, demoralizing and scary as it was to grow up unable to do things and not know why, it made me incredibly thankful when I finally did receive a diagnosis.

I remember being compared to my younger siblings. I was often called lazy. My experience of being treated less than fairly made me the advocate I am today. I’m also dedicated to raising funds for Muscular Dystrophy Canada (MDC), because I know from personal experience that the resources, connections and programs they offer are life-changing. I know these services are only possible, because of gifts from special donors like you.

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MDC is at great risk of not being able to continue offering these incredible services. Their revenue has drastically decreased during the pandemic, and demand for programs and support services has risen. You have been instrumental in providing these services in the past. Will you consider donating today to ensure individuals, like me, can continue to access the support we need during these challenging times?

The holidays are almost here and people are getting excited and finding new ways to celebrate with their loved ones. For me, the holiday season means snow, increased expenses and further isolation and loneliness.

I hope this holiday season you will remember the challenges many of us are facing.
Because you have the power to give the gift of hope and connection by supporting MDC.

Sometimes I get very angry. I’m angry that my loving wife and wonderful children have
to watch their dad struggle. I’m angry that I can’t be there for them in the ways I want to be. I’m angry that we, the disabled community, so often seem to be forgotten. I can’t deal with the anger and isolation alone. Thankfully I have a friend like you in my corner.

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Because of you, I am able to participate in MDC’s virtual network meetings. These meetings give me a chance to connect with others who understand my situation and frustrations. It also gives me the chance to help others and be a support system for new friends across the country.

Did you know you were providing a safe, accessible way for individuals affected by neuromuscular disorders across the country to connect with each other, form friendships and reduce isolation? This type of gift is invaluable. But without your continued generous support, these opportunities for connection are at risk.

You have the power to bring people together, to reduce isolation and loneliness and to brighten someone’s day in a meaningful way. Will you make a donation today to spread a little holiday joy?

The financial support, equipment and emotional connections you provide are important every day, but even more so during the holidays. I hope you will make a donation today to make sure no one feels forgotten this holiday season.

Warm regards,
Warren Jones

P.S. Give the gift of joy and connection today. Then if you know someone impacted by a neuromuscular disorder, tell them how you are supporting MDC and encourage them to attend a virtual network meeting. I’d love to make a new friend.

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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.