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$4.8 Million and counting….

Shad’s 44th annual golf tournament raises $175,000 for Muscular dystrophy

Since 1973, Shad’s R&R Golf Tournament has supported Muscular Dystrophy Canada’s efforts to improving the quality of life for the tens of thousands of Canadians with neuromuscular disorders and taking the lead in research for the discovery of therapies and cures.

This year, more than  200 participants from all sectors of the automotive aftermarket took part in a day of golf, dinner, and prizes with all proceeds going to Muscular Dystrophy Canada. The 44th annual Shad’s R&R for muscular dystrophy raised $175,000, bringing the total money raised since its inception to $4.8 million.

The proceeds from this golf tournament have been invested in world-class research projects that are helping to answer questions about neuromuscular disease and finding ways to improve the medical care and quality of life for the young children that are affected by these conditions. For the first time in history we are seeing new treatments and clinical trials that show incredible potential to slow or reverse the progression of some of the 160 different types of neuromuscular disorders. Now more than ever, people with neuromuscular disorders are living longer and more empowered lives.

All of this would not be possible without the ground breaking research taking place throughout Canada and beyond. This research would not be possible without donors and supports, like Shads, who continue to demonstrate incredible generosity.A very heartfelt thank you to the organizing committee including David, Keith Brad, Marilyn, Samantha and everyone involved. Your dedication to this cause is evident and your dedication so greatly appreciated.

The Reynolds Family – You Made A Miracle Happen

You Made A Miracle Happen

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.

Reynolds Family

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,

Bri Reynolds Signature

Bri Reynolds

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.  

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You Can Make The Impossible Happen: Help Us Invest In Hope

Dear Supporters,

Each year, more Canadians are diagnosed with neuromuscular disorders and there is still no cure. Now, for the first time ever, there is hope on the horizon.

Today, we can proudly say that we are at a turning point in the fight against neuromuscular disorders. Not only are newly diagnosed patients and individuals leading more independent and active lives while living with this disease, but they are also living with the hope of a cure.

One young man who inspires us is Sam. Sam has Spinal Muscular Atrophy (SMA) and is starting his first year of university in September. He hopes and believes that research will change his life and the lives of the other people he has met who are living with SMA.

Like Sam, they are all waiting for a major-medical advancement and ultimately a cure to be found. And, until then, Sam is determined to keep studying, and hoping for a breakthrough.

Today, without your support to invest in the best and most innovative research, people living with this terrible disease will have to wait longer for a cure that can’t come soon enough. Your gift today gives our community the hope needed to keep dreaming.

Because of you, researchers are crossing into new and uncharted territories. With the discovery of CRISPR, a technology that allows scientists to edit genetic code, cures for neuromuscular disorders are becoming more and more likely.

Canada's Top Researchers - Muscular Dystrophy Canada

Because of you, we’re working with some of Canada’s top researchers.Top left to right: Amy McPherson PhD, Louise Rose PhD
Bottom left to right: Dr. Janice Richman-Eisenstat, Dr. Sherri Katz

Only recently, scientists at Toronto’s Sick Kids Hospital used CRISPR to treat paralyzed mice with the hopes of restoring movement. Not only were they able to restore movement, but the mice also started to regain muscle strength. Soon, the mice were walking again. This is a revolutionary breakthrough, accomplished by scientists right here in Canada.

Restoring movement to a paralyzed patient was once the stuff of miracles, soon it could be what’s possible.

Not only are we working with some of Canada’s top scientists and researchers to find cures, but also with clinicians and doctors who are working to improve the quality of life for neuromuscular patients today.

With your help, Muscular Dystrophy Canada is investing in critical research and providing more resources, education, and services to families faced with neuromuscular disorders than ever before.

This past year, we have awarded grants to researchers Amy McPherson and Dr. Sherri Katz in Ontario as they find new ways to improve the breathing of children with Duchenne Muscular Dystrophy. In Alberta, we are working alongside Dr. Janice RichmanEisenstat as she develops a world class pilot project on respiratory issues. Your investment in Muscular Dystrophy Canada enables us to work with some of the brightest minds in the field.

Until we find a cure, one of the most important things that we do as a community is to be there for families, reminding them that they are never alone.

When asked what research means to him, Sam said, “knowing that people are working day and night to find a cure. It means I can go to bed with the dream that tomorrow will hold what I’ve been waiting for……a cure. This is a powerful motivation to keep moving.”

Having you in our community of supporters makes what we do possible. And this year, because of you, researchers across Canada have access to almost a million dollars in funding to improve lives, develop treatments, and research cures for people living with neuromuscular disorders.

Monthly giving is the very best way to an improved quality of life and treatments while searching for a long awaited cure. By making a donation today, you give us the resources to keep pushing towards a future free from neuromuscular disorders. Please join our Circle of Strength today and provide ongoing vital funding to research grants.

You are what makes all of this possible. Your support means that we are improving the chances of people, like Sam, who are diagnosed with neuromuscular disorders, while supporting their families with top quality services as we continue searching for a cure.

We are more confident than ever that a cure will be found. Finding a cure can’t happen soon enough as, every day we wait, we lose more friends and loved ones.

We need your support today so that we can provide our researchers with the resources and tools they need to continue their work. Help us give the gift of hope to individuals like Sam struggling with a neuromuscular diagnosis.

Thank you for believing in our mission and a world free of neuromuscular disorders. Your gift today will continue to make the impossible happen.

Sincerely,
Barbara Stead-Coyle

P.S. – Thank you for giving a gift of hope and investing in research for individuals like Sam who are waiting for a major breakthrough or cure. Please make your gift today so we can tell Sam to keep pursuing his dreams.

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Read the Bissonnette Family Story

Our superhero Malik, as his favourite superhero Batman.

Our superhero Malik, as his favourite superhero Batman.

As a Fire Fighter, I have seen people face life changing moments daily. As a father, you are never prepared when they happen in your home, to your children. You remember that look of pain, fear, shock and disbelief. I never thought it would happen to us.

Today, I am sharing with you my story about our son, Malik. Last March, Natasha & I heard the hardest news parents can ever receive. Malik was diagnosed with Duchenne muscular dystrophy. Duchenne muscular dystrophy is an inherited neuromuscular disorder which usually affects boys. It makes muscle cells weak, and they gradually break down over time. And as of today, there is still no cure.

It’s not easy to start to see Malik slow down. Just as other kids his age are speeding up, we’re having to prepare for life at a different pace. I cannot describe the terror we felt when we found out Malik had Duchenne. Since Duchenne is hereditary, we realized our youngest son, Gabriel, could also be affected. We could barely sleep, thinking about the potential outcome. Thankfully, those results came back negative, Gabriel was in the clear.

Malik is no different than any 5-year-old. He loves to run and play, whether around our family cottage, swimming in the lake, or playing in the park. Malik is always discovering. He loves to pretend to cut the lawn on his electric John Deere mower or to dream of adventures with his absolute favorite thing, Thomas the Train!

Malik dressing up as another one of his favourite heroes, a Fire Fighter.

Malik dressing up as another one of his favourite heroes, a Fire Fighter.

I can’t put into words how hard it is to know that Malik will have to grow up faster than other kids. But, because of your generosity, families like ours are able to receive the support we need, leaving Malik to focus on just being a kid for now. Thank you for all that you do.

Thankfully, just like you, Natasha and I discovered Muscular Dystrophy Canada! After Malik’s teacher and the Children’s Hospital of Eastern Ontario referred us, we reached out and their support and reassurance have made all the difference to our family. Muscular Dystrophy Canada has shown us that there is a path forward, and we know that they’ll be with us every step of the way.

With the weather improving, Malik is excited to shed his bulky snowsuit and boots to get outside to play! The warm weather, breezy shorts, and sneakers make it easier for Malik to move a little faster, helping him forget the invisible force trying to slow him down. Your gift today means that the support and services offered by Muscular Dystrophy Canada are there for Malik, and our family, every time we need them. Thank you.

Since becoming a Fire Fighter, I was aware of the special place that Muscular Dystrophy Canada held in the hearts of departments across this country, but it wasn’t until after Malik’s diagnosis that the enormous impact that Fire Fighters make became clear. What had begun as a department tradition now turned into a family one, with a yearly goal to raise more money than ever before.

I was a bit nervous to share Malik’s news with the department, but when I did, the place went off like a fire cracker! The department rallied around our family, the whole department pledged to renew their commitments and help out as much as they could. It amazed me to see this group of people become such a tight knit family. Our little family of four continues to grow.

My beautiful family. Natasha and I with Malik and Gabriel

My beautiful family. Natasha and I with Malik and Gabriel

Since the diagnosis, we have been on a rollercoaster of highs and lows. The incredible support and generosity of our friends and families has been overwhelming. It hit me the hardest as my department suited up in full gear to walk with our family in the Walk for Muscular Dystrophy, in the pouring rain and all.

As we become more involved with Muscular Dystrophy Canada, one thing is clear, it is people like YOU who provides the ongoing support that will help Malik keep going, and give us the strength to never stop searching for a cure.

I hope we can count on you once again. Along with the support of our family and friends, your generous support of Muscular Dystrophy Canada keeps us motivated. Knowing that there is a whole community of people pulling for us, makes each day a little easier.

On behalf of every family searching for hope, thank you. Thank you for supporting all of the families and superheroes like our Malik, who will face new challenges every day of his life. Your support means we won’t have to face them alone.

Sincerely,

                                                              Patrick Bissonnette, Father and volunteer Fire Fighter

 

P.S. – Over 3,500 boys are born with Duchenne muscular dystrophy every year. Your donation helps to empower them to live an independent life and fund new research in the relentless search for a cure.

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Adaptive Outdoors: Cecile Buhl takes to the Mountains

Cecile Buhl at Grassy


Cecile Buhl at Grassy Lake

The last two outdoor experiences I had were very different from each other. The first was one of speed and freedom while the second was one of wondrous beauty. My first adventure brought me to Grassy Lakes in Canmore. I was going to try a piece of new adaptive equipment. It was a rainy cool day and it looked as though we were socked in. My team for the day Jamie from Rocky Mountain Adaptive Sports Centre ( RMASC ) and Sonya, a friend and Sherpa, suggested that we go for coffee and a pastry while we see if the rain would blow through. Luckily, it did. I was very determined to use this equipment and would have been extremely disappointed to go home without following through. We went back to the site and prepared to go uphill to Grassy Lake. We went up at a good pace, but the real speed would be coming back to the parking lot.

The 3 wheeled Park Explorer was a nice change from the Trailrider because it gave me the chance to navigate and move around some of the objects that normally I would have to roll over. The trail was wide and relatively bump free, perfect for the Park Explorer. As we got to the top we enjoyed the clear still “lake” – more like a pool – for a few moments. It was sunny and warm now so we took it all in. Now was the time I was waiting for. I wanted to ride down the hill as fast as I could. As we started, I had to feel how the equipment would move, but it didn’t take me long to feel assured. The breaks were solid and that was all I cared about at this moment. I started to roll and Jamie was guiding me at first, but soon I was travelling too fast for him to keep up and I was on my own. He was not far, just in case I got into trouble. I did slow down eventually because my caution overtook my need for speed. I was hooting and hollering having a great time. Needless to say, the parking lot came up far too fast, and I couldn’t wipe the smile off my face. It seemed the people watching had the same reaction.

My second adventure was not as adrenaline pumped as the first, but it still brought out a lot of emotion. Three participants and a whole lot of volunteers, guiding a Trailrider, were going to make the trek to Larch Valley in Lake Louise. We left from Moraine Lake lodge and started our ascent that would eventually level out to the valley. It was a cold day for me, but had on a lot of layers and was settled in sleeping- bag- like – sleeve set up for the Trailrider. After a short safety lesson, we took our group photos and were off. It took us a good two hours to get to the lunch spot. The sights were amazing and even though the larches had lost most of their needles by now it was nonetheless spectacular. I had no idea the larches were so dense in this valley.

Cecile Buhl Larch Valley

Cecile Buhl With Team Members at Larch Valley

We spent our lunch sitting in an alpine meadow looking at the valley with the snow-covered mountains along the horizon. Between one of the high valleys perched a glacier with a clear blue hue that showed how dense and cold it was. We continued to a windswept plain with stunted trees and pelting ice rain as we trekked to the lake at the base of one of the mountain ranges. I would have taken it all in had I not been pelted and blinded by the ice flying into my eyes. But, it was worth it! As we turned and shot our final group picture at our destination we all cheered and sat in wonder again of what was around us. It was truly a spectacular day even through the snow, cool temperatures, and a cold I had earlier contracted. I wouldn’t have changed a thing.

Cecile Buhl
 

 

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