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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Double Your Impact Today

Have you ever heard of Giant Axonal Neuropathy (GAN)? Probably not. It’s a really rare neuromuscular disorder.

Hi! My name is Jordan and I’m 9-years old. When I was three and a half, a doctor told me I had GAN. My family had no idea what this meant. But the doctor told us that my nervous system is slower and doesn’t work as well as other kids’.

When I was little, I had trouble standing up and walking. At first, my parents thought I was just clumsy. I don’t remember this very well, but my mom says getting my diagnosis was like a never-ending road.

It took two whole years to figure out what was happening to me. When they finally found out about my disorder, my mom says it felt like she was kicked in the gut.

If you give a gift today, scientists can find out more about rare disorders to help people, like me. And today, your gift will go two times as far because a generous donor has agreed to match all gifts to my letter up to $25,000.

Did you know there are over 160 different kinds of neuromuscular disorders? That’s a lot. I have one of the really rare types. And there are lots of other people with different rare types too! Thankfully MDC is here to help people no matter what type they have!

Will you give a gift today so families like mine can get the help they need?

When I was 4-years-old, I needed a walker. Then when I turned five, I got my first wheelchair. Later, MDC helped me get a cool new power wheelchair. I’m really lucky, because I have donors, like you, to help me. But there are a lot of other people with rare disorders who need help, too.

It’s great that we know what my disorder is so that I can get the help I need. Many kids aren’t able to get diagnosed.

My disorder never stops me from having fun! I always wanted to learn how to dance so my mom signed me up for dance classes. She didn’t want to wait because one day I might be in my wheelchair full-time and dance classes would be very different.

Sometimes, my family needs help. If I need a new wheelchair or something else to help me, my mom just picks up the phone and calls MDC. Sometimes she talks to them for a long time, but she always seems happy.

Donors like you help make moms and dads feel happy, and less angry and sad. Right now, because of a special donor, your gift will help even more people! Will you give a gift today?

There are so many different types of disorders. But everyone should be able to get the help they need! MDC supports research, advocacy and helps families like mine get support and equipment—like my walker and wheelchair! When you donate to MDC, it really helps. We are so lucky to have you.

By giving a gift, you give me and families all over Canada HOPE for the future. I’m counting on you to give a generous gift today so you can help others live their best life.

Thank you for helping kids like me keep on dancing!

Jordan Gagnon

P.S. A generous donor has agreed to match the gifts from my letter! How awesome is that? They will match up to $25,000. Which means we can help so many other families. MDC supports research for treatments and earlier diagnosis and supports families impacted by ALL neuromuscular disorders, even the really rare ones—like mine!

MDC Urgently Needs Your Help

Dear Friend,

I truly hope this letter finds you and your loved ones safe and well during these uncertain times.

I am reaching out to request your support. As a result of COVID-19, Muscular Dystrophy Canada (MDC) has experienced a significant decrease in our fundraising revenue. As an organization that does not receive government funding, MDC relies on generous donors and supporters, like you, to meet the diverse and ever-changing needs of our clients.

Your support has enabled MDC to deliver its critical programs and services, like our equipment funding program, to thousands of clients across Canada for over 66 years. To ensure the safety of all, we have had to make the difficult decision to cancel and or postpone in-person fundraising events. As a result, MDC has experienced a decrease in revenue by over 60 per cent in our first quarter.

Therefore, we’ve had to decrease funding for our equipment program by 40 per cent meaning fewer clients are getting what they need. Our clients need us now more than ever as they have limited resources and are coping with issues related to COVID-19.

That’s why we’re hoping you will consider making a special donation today, if you can.

One such client who needs help is Courtney White. Courtney is a single mom of three children. Her two sons have Duchenne Muscular Dystrophy, and she desperately needs a bathroom lift for her home. She shared with us that, “This pandemic has been incredibly hard for our

Harley and Ayden, with their mom Courtney and sister Keira, need your support to access critical, life-changing equipment.
family. Right now, I have to lift my oldest son, Harley, in and out of the bathroom. He weighs significantly more than me. Having a ceiling lift from the bedroom to the bathroom would mean more independence for the boys, less physical stress on me and more time to spend together as a family. But, due to COVID-19, funding has been delayed significantly.”

Sadly, the crisis is far from over. You can help us continue to fund critical equipment for people impacted by neuromuscular disorders. We urgently need your support. If you are able, please consider donating today.

MDC has almost 100 people waiting for critical equipment. As you may know, often government doesn’t fund or fully cover the high costs of essential equipment like wheelchairs, ramps, lifts and respiratory aids. For some this means not being able to live in their home safely. For others, like Courtney’s family, it means emotional and financial strain in addition to health and safety concerns for caregivers.

Courtney also shared how thankful she is for the support that donors make possible.

“MDC always does everything they can to help us. For a single parent in this situation, securing financial support for equipment would take a huge weight off my shoulders, both literally and figuratively. Without you, I can’t get the equipment I need for my sons.”

If you are in a position to donate, I hope you will consider doing so today. You will be helping Canadians impacted by neuromuscular disorders access the critical equipment and support they need to live their best lives.

Thank you for being there when we need you most and continuing to support those impacted by neuromuscular disorders. I hope you have been safe and healthy during these uncertain times. If you have been impacted by COVID-19, you are in our thoughts.

With deepest gratitude,

Stacey Lintern
Interim CEO
Muscular Dystrophy Canada

P.S. At a time when our ability to raise funds to support the neuromuscular community has been diminished, we are experiencing a significant increase in requests for our services. You have MDC’s commitment that we’ll continue to do everything we can to support our clients and their families. But, in this period of uncertainty, we really need your help.

National Volunteer Week 2020

Muscular Dystrophy Canada is a volunteer-driven organization. We rely on dedicated, enthusiastic, diverse and dynamic people to help us meet our mission – from clients to family members, community supporters to like-minded organizations, and healthcare professionals to Fire Fighters and beyond.

All of our volunteers are key partners in the delivery of MDC’s support programs, services, fundraising efforts, and governance. We want to thank ALL of our wonderful volunteers for everything they do, and for believing in our mission.

For National Volunteer Week (April 19–25), we highlighted a few of our extraordinary volunteers. Read their profiles below:

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You can break down barriers for Canadians living with a neuromuscular disorder

Thanks to you, our committed, generous donors, 2019 was an incredible year. Because of you, Muscular Dystrophy Canada supported clients through 13,458 calls and interactions, funded $1.1 million in research, and supplied 1,192 pieces of vital equipment for clients.

Help us start the new year off right. Canadians, like Stefanie, need your support.

But we still have so much more to do to break down barriers for Canadians impacted by neuromuscular disorders—and we can’t do it without your continued support.

Canadians are still facing barriers when it comes to being diagnosed early and properly, accessing treatments and at an affordable price, and knowing how to use our healthcare system to get the help they need.

Just a few weeks ago, I had the pleasure of meeting a Muscular Dystrophy Canada (MDC) client, Stefanie Marinich-Lee, who amazed me with her tenacity and openness to talking about the struggles Canadians living with a neuromuscular disorder are facing every day.

Stefanie was diagnosed with Type 3 spinal muscular atrophy (SMA) when she was 17 months old. As a child, she remembers struggling to walk. How after each fall it was even harder to get back up. Despite the obstacles she faced, she never gave up. Stefanie told me, “My parents always said I could do anything—that my disability did not define me.”

So, at 19 years old, Stefanie left home to study at the University of Waterloo and chased her dreams of becoming a lawyer. As her career took off, and her disorder progressed, she started losing abilities. Simple everyday tasks, that most of us take for granted, became more and more difficult for her. Some were impossible. It shattered her to pieces when she had to step away from her dream career. She felt isolated and battled depression.

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The DeVries Family

I always dreamed of having a big family. What I never imagined was the heartbreak and stress that comes from having children with serious health disorders.

Families like the DeVries need your support this holiday season.

I have six children, all boys, and three have Duchenne Muscular Dystrophy.

Thankfully, we found Muscular Dystrophy Canada. Because of donors, like you, MDC is able to provide support to Canadian families, like mine, who are living with the challenging realities of a neuromuscular disorder.

Of course, each and every family impacted is different, but we all could use a little holiday magic this year. Will you help make someone’s wish come true by giving a special gift this holiday season to help families in need?

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Brayden’s Journey

I met Brayden Graft when he was just five-days-old. Little did I know then the impact he would have on my life.


Individuals, like Brayden Graft, diagnosed with Duchenne Muscular Dystrophy need your support to live rich, full lives.

My friends Leanne and Tony had been fostering children for about five years and already had a baby at home when their social worker called about Brayden. They didn’t even think twice about taking him home.

You probably have friends just like Leanne and Tony. Humble, hardworking people with a ton of love to give. Leanne has always had a soft-spot for children, with four of her own, but as her kids grew up and left home she knew she and Tony had more love to give.

Eighteen-months-later they were offered the chance to adopt Brayden and once again they didn’t hesitate.

They couldn’t imagine life without him. He had become their precious, fun-loving son.

Just a couple of months later, Brayden was diagnosed with Duchenne Muscular Dystrophy (DMD).

This month, my team members and I celebrated International Fire Fighter Day, and in honour of that, I hope you will read Brayden’s story and consider making a donation to Muscular Dystrophy Canada (MDC).

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Rachel Andrews Story

It’s been a little over a year since I sat in a Neurologists office, with my husband by my side, and heard the words “I believe you have Facialscapulohumeral Dystrophy (FSHD)”.

My first response was, “say what?” It’s a mouthful for sure, but I’m fortunate my failing facial muscles are still able to say it.

Hello, my name is Rachel and I wanted to share my story with you because Muscular Dystrophy has impacted my life since well before my diagnosis. And, I believe more research and education will ensure Canadians like me don’t continue suffering with undiagnosed symptoms.

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