Muscular Dystrophy Canada (MDC), on behalf of the Canadian neuromuscular community, has reached out to the Minister Gaétan Barrette, Health and Social Services (Québec).
We have reached out to Minister Barette to encourage him to reconsider the position that l’Institut national d’excellence en santé et en services sociaux (INESS) has taken by not recommending Spinraza for reimbursement for the treatment for all types of Spinal Muscular Atrophy (SMA).
We will update our community when we hear back from the Minister.
Welcome to 2018! Just like me, you probably wrote a list of resolutions to kick off the New Year. Can I ask you to add curing neuromuscular disorders? It’s on mine, and with the leaps and bounds we’re making in research, I’m feeling hopeful.
We have big goals for 2018. From finding new treatments to continuing our relentless search for a cure, we have our work cut out for us. But with support from generous donors, like you, we have the resources and passion to make it happen.
The truth is, our community is a resilient and tough bunch, overcoming the challenges we face together every day. However, watching a loved one struggle in pain is a terrible burden for anyone. For those caring for people with a neuromuscular disorder, it’s a reality they have to face each and every day.
We know that there is a steep learning curve when building a new life with a complex disorder. And to make things even more complicated, no one experiences a neuromuscular disease the same way. Because of this, we work with our clients to develop a custom and holistic approach to their individual needs, every time.
In 2018, we will be training more coaches to help our clients navigate through the challenges they’ll face. Our coaches are trained to listen and figure out where clients are in their own personal journey, and then provide them with the tools and resources to get them to where they want to be. Your generous support allows us to work one-on-one with clients, person to person.
As the world steps away from human connection, we’re doubling down on what we’ve always done, and taking a bold step toward it.
As I travel around the country, meeting clients and hearing their stories, I always come home with new insight into the work we are doing together. Recently a mother told me that, “When my son Ryan was 5 years old he was diagnosed with Duchenne Muscular Dystrophy. This experience is so isolating. No one can understand it unless they’re in it. Even family and friends don’t always understand. Planning a simple outing becomes incredibly complicated. But, fortunately, we have Muscular Dystrophy Canada. Through MDC, we have a healthcare coach. She’s the one I turn to when I need help to get through the tough times. She helped me advocate when the school administrators decided that Ryan needed to stay in his wheelchair all day. And she helped again when they decided he couldn’t go canoeing on his graduation trip.” These are the kinds of stories that convince me we’re on the right path.
Your continued generosity and dedication to the Muscular Dystrophy Canada community means that clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts. Because of you, we can be that helping hand when families need it most.
Sharing a story or a smile with a friend is often a great comfort. We are all looking for human connections. But when you live with a neuromuscular disorder, you can often feel isolated, like there isn’t a place in the world for you. This can be a terrifying feeling. To fight the fear, we’ve developed Family and Caregiver Retreats where our clients can connect with others who understand what they’re going through. We know there is strength in numbers, especially when we listen and understand each other. Strengthening these bonds is just one of our priorities for 2018.
At our last Caregiver Retreat, the wife of an individual with a neuromuscular disorder told me that, “From the moment I sat down for lunch on Saturday and looked into the eyes of the other participants who were virtual strangers, there was an instant connection. I felt they understood me without saying a word.” This is what your donations do.
We’re confident that the work we’re doing is going to allow us to make an even bigger impact in 2018 because we know you’re with us. We couldn’t do it alone.
Now is the time to renew your support and join us for the next leg of the journey. Your gift of $35, $50, or $100 to Muscular Dystrophy Canada will mean that more clients will feel less isolated, less afraid, and more hopeful for what tomorrow may hold.
If, like us, you’re ready to cure neuromuscular disorders once and for all, become a monthly donor and join our Circle of Strength. When we have a steady source of funds, we can spend less time fundraising and more time working directly with clients. It’s also a way for you to spread your generous contribution out over the year.
Our clients across Canada, from coast-to-coast-to-coast, rely on incredible donors, just like you. We know that you are as committed and ready for a fight as we are. Together, we’re the unstoppable force that will defeat the fear and isolation. We’re the force that will find the cure.
From our MDC family to yours, we wish you a wonderful and prosperous 2018.
Chief Executive Officer
P.S. This year we continue to push beyond possibleto impact more Canadians affected by a neuromuscular disorder. Your gift today will push us further than we’ve ever been.
Highlights From Your 2017 Walk for Muscular Dystrophy
It is my pleasure to get to share with you the results from this year’s Walk for Muscular Dystrophy! In the video you’re about to watch, we’ve highlighted incredible spirit and participation from coast to coast.
We are proud to say that together, we hit our milestone of 1.3 million dollars raised! This money goes directly to support families dealing with the challenges of living with a neuromuscular disorder. It supports cutting-edge research that is making leaps towards finding a cure, compassionate programs and services and funds equipment applications to empower clients. These supports make a huge difference in the lives of our families.
The Walk is an important fundraiser for Muscular Dystrophy Canada, but it is also an opportunity for our supporters and community members alike to come together and strengthen the bond we all share. It is a chance for families, individuals, teams, volunteers and Fire Fighters to come together in a shared experience, walking, wheeling, and rolling to raise funds for a cause that we all hold close to our hearts.
The incredible work and enthusiasm you show each and every year ignites our passion and gives us the motivation to keep growing, while bringing new people into our community. We are thrilled with the 2017 Walk results, and we know that with you on our team, we can do even more next year!
Please know your support means the world to our community and we look forward to welcoming you to a Walk in 2018!
Now, for the highlights!
Starting in Newfoundland and Labrador, a big highlight was the participation of Team Roberts and others, who grew the Corner Brook walk by 100%.
On Prince Edward Island, we had a sea of blue as RBC turned up in big numbers to show their support!
In New Brunswick, Serge Lanteigne led the charge and became the top fundraiser in Atlantic Canada with a personal total of $19,970! Incredible work Serge!
And finally, rounding out the Atlantic provinces, the Halifax chapter held a gaming night that raised more than $4,000 dollars pushing the Halifax Walk total over $65,000 making it the top walk in the region!
In Quebec, we had a great turnout with almost 400 participants across the province. The Keindel Family and Friends were the top team raising $11,374!
Over to Ontario where the Peel Walk for MD had not only the largest fundraising total for an Ontario Walk this year, but was the largest Ontario Walk total ever! Congratulations to everyone who was involved in raising more than $70,000! Amazing!
In Manitoba, our Walks continued to grow with more than 200 people coming out to the Winnipeg Walk, the most we have ever had in that region!
It was a record year in Saskatchewan as well, bringing in a total of $87,721 dollars, the highest total to date!
In Alberta, Erin’s Squad led the charge again with an incredible $56,255 dollars raised, making them the highest fundraising team in Canada for the second year in a row! What an incredible accomplishment.
And last but not least, in British Columbia, four of the teams were in the top 10 fundraising teams across Canada! Special shout out to Thee Golden Spirits, MMR and Friends, Team Party Hardy, and Devon’s Dino Team!
We are so proud of the amazing accomplishments that all of our participants achieved in 2017 and the impact they have had on our community. Your passion and enthusiasm for Muscular Dystrophy Canada means that more Canadian lives are impacted each and every year. For that, we send you our heartfelt thanks and gratitude, and can’t wait to see what you will achieve in 2018! Keep on Walking Canada!
How would you feel if in a few weeks someone told you, you wouldn’t be home for Christmas? That’s the situation my family was facing this time last year.
I live with two types of muscular dystrophy. One affects my legs, the other everything above my shoulders. There’s no way to give words to the feeling of losing control of your body.
Last summer, it began with a bad cough. But it quickly worsened to the point that I ended up in the emergency room. I thought that I’d be home soon. But after two weeks in a hospital bed, I was brought to the Intensive Care Unit.
A row of doctors came in to see me. Some days, it felt like every doctor in the hospital passed by to examine me— to ask questions. Each time, I asked the doctors, when am I going home? I needed to be with my kids. It felt like no one could hear me.
The Reynolds family at Christmas when the kids were young.
Weeks passed by and each time the answer was the same: No. No. No. It was all I heard. You might be strong, but after a while it gets difficult to keep hope alive.
Soon came the tracheotomy. My muscles—my body— couldn’t be trusted to keep me alive any longer. I woke up to a hole in my throat, a tube snaking down to my side. I felt air flowing down my throat and into my lungs. You can imagine how strange that felt. Breathing is so natural— you don’t usually think about it, until it’s all you think about.
Weeks turned to months. Summer was over. Every day, my husband Lucan brought the kids to visit. It was the best part of each day. He was always moving— from school, to the hospital, back to school to get the kids, home for food and homework and then back to the hospital. He was exhausted. You wouldn’t want to put your family through it. I felt so helpless.
I lay in bed when the first snowflakes of the year fell. Out my window I could see the world turn white and I knew that time was running out to make it home.
The next time I saw the doctor, I told him I fully intended to be home for Christmas. I’d missed summer with my family; I wasn’t going to miss the holidays too. Instead, he told me that I wouldn’t be leaving the hospital. My heart dropped into my stomach.
A few weeks later I believed them. My hope was almost all used up. It’s funny how things happen though. You never know what tomorrow will hold, it’s something of which I try to remind myself.
One of the brightest spots was the nursing staff. They fell in love with my family. How couldn’t they? You’d love them too if you met them. My three sweet children and my loving husband at my side, every single day. I don’t know how I got so lucky to be so loved.
After months of seeing the kids come and go, the nurses decided to make our Christmas in the hospital as special as they could.
In secret, they collected presents for the kids. Reporters from television came to share the story — a special piece about my family for the evening news. I joked that I didn’t want to be in bed when company came over, but in the end, I didn’t have much choice.
After we opened presents and everyone left, I kissed my husband and kids and sent them home. I had no idea that you were about to make my dreams come true.
The next day at school, the kids were famous. Their friends had seen the news the night before. They were all jealous of all the presents the nurses had given the kids! You’d think they forgot about me! But thankfully, they weren’t the only ones. One of their teachers had seen the piece too, and she had an idea of what to do.
She forwarded the story to her husband, a Fire Fighter in the town of Port Perry. Without anyone telling him what to do or how to do it, he decided to do something. You probably know that Fire Fighters have been saving people with muscular dystrophy for more than 60 years, but I had no idea!
He picked up the phone and made a call to his contact at Muscular Dystrophy Canada, an organization he’d been volunteering with for the past couple years. He had a feeling they’d know what to do. And maybe with a little luck, we could turn a no into a yes.
For months, I had felt alone in the hospital. Now, I had an army by my side. I wish you could have seen it.
Meeting after meeting, the Muscular Dystrophy Canada team kept pushing the doctors harder and harder. Every time a new problem popped up, they had a solution ready. They really believed that they could get me home for Christmas. And I started to believe it too.
First, I needed a ventilator, then a special bed, a lift, and a battery— all just to get back in my home. The equipment was expensive, and without an organization like Muscular Dystrophy Canada, families would have to pay for it all on their own.
But you must know all about that. You’re the reason they can do what they do. It’s funny that you knew about their amazing work before I did— and I have muscular dystrophy! You are doing something incredible by donating. I can’t begin to imagine how many families you’ve saved, just like mine.
With only days before Christmas, it all still seemed too complicated. After what I had been through, I felt crazy for feeling so hopeful, but it’s all I had.
On Christmas Eve, everything started to come together. Everyone involved was working around the clock. The holidays are busy, but the team from Muscular Dystrophy Canada never stopped. They stayed with me. They never gave up.
Finally, after all of the false starts, the moment I had waited months for happened. The doctors came to see me. I was going home.
You were there for me when I needed you most. We don’t know each other, but you made my dreams come true. You must have known that it was possible all along, and it’s why you give. It was you who brought my family back together just in time for Christmas.
It was just before midnight when the ambulance pulled into my driveway. They snuck me into the house under the cover of darkness.
Things inside the house had changed with all of the new equipment. They helped me into a special bed on the far side of the living room. I had a perfect view of the glowing Christmas tree, with all its lights and decorations. But best of all, I could see the bottom of the stairs where I knew my kids would be in just a few hours.
After months of separation, Lucan and I finally cuddled on the bed in our living room. We were back together. I didn’t want to close my eyes in case I woke up back in the hospital. But eventually I dozed off.
When I opened my eyes, it was still real. When everything seemed hopeless, you made my dreams come true. Your donations to Muscular Dystrophy Canada made a miracle happen for my family. You can never be thanked enough.
It wasn’t long before I heard feet hit the floor as the kids raced downstairs. From my bed in the living room, I could see them as they made their way to the Christmas tree. But then they saw me. We held each other tight, crying and laughing. That was, without a doubt, the greatest Christmas we’ve ever had.
I know I’m one of the lucky ones. Because of you, I didn’t have to spend Christmas in the hospital. I made it home in time to be with my husband and kids, to be their mom again. You gave my family another Christmas together, a gift I will cherish for the rest of my days.
With love, thanks, and warm wishes to you and yours,
P.S. You made sure I got home for the holidays. I’m so grateful for the gift you gave me. I know other families that aren’t so lucky. Let’s give this gift to another family in need. You can’t put a price on seeing your children’s faces light up on Christmas morning.