“My son is a 14 year old boy with DMD who was diagnosed when he was just one and half. Despite the physical limitations, Mark loves nature and outdoor time. But, we have to closely monitor the steps he takes so that he is not overexerting himself which will result in muscle cramps or even permanent damage. So sadly, we had to press pause on some outdoor activities until we could get him a manual wheelchair. It was not easy to find a good sized wheelchair for him to use safely outside. The health insurance only covers some portion of the cost for the customized chair we got for him. MDC reached out the helping hand as soon as they got to know about our needs and provided incredible support mentally, emotionally and financially. Thanks to MDC, our son can now go out and enjoy the fresh air of the forest with more mobility and independence. Life doesn’t have to be perfect to be wonderful. MDC’s life-changing support always comes at the perfect time and makes our lives better. We know there are so many heroes with capes working very hard to support us and other families in need.”
“We thought our child was going to die a very slow and painful death. Our world ended, and we were never going back to life as we knew it.” Those were Amanda and Brodie’s first thoughts when they learned their son, Ben, was affected by Duchenne muscular dystrophy (DMD).
For the first three years of Ben’s life, countless doctors and physiotherapists told his parents that he suffered from low muscle tone. Unable to crawl, or walk unassisted, Ben was referred for blood tests. “When the doctor told me he had muscular dystrophy, she sent me information that told me I should expect my son to be in a wheelchair by age six, on a ventilator by age eight and dead by 19,” Amanda says. “It was horrific, devastating news.”
When a Canadian is diagnosed with a neuromuscular disorder, Muscular Dystrophy Canada (MDC) knows they will need a lot of support and have many questions. Your gift today will give families hope. When you’re facing a life-changing diagnosis for your child or family member, hope can make a huge difference.
Since our inception, MDC has been a leader in funding ground-breaking research for all neuromuscular disorders. For decades, MDC has been helping to accelerate the development of more treatments, therapies, and hopefully, one day soon, potential cures. It is an exciting time for neuromuscular research and we are proud to see incredible advancements that are having real-world impacts on families like Amanda and Brodie’s.
After the initial shock of Ben’s diagnosis wore off, and Amanda and Brodie were able to digest the information they had received, they were referred to MDC by their healthcare provider. Armed with new information about therapies and medication available, Brodie and Amanda started to have hope once again. “I remember feeling that finally there was a light at the end of the tunnel”.
By donating today, you are investing in families like Brodie and Amanda’s. Whether through research investments or helping them navigate upcoming treatments for Ben, your gift can enable so much. Thanks to you and others like you, we can continue to invest in Canadians affected by neuromuscular disorders in the ways that matter most to them.
“The funding that MDC has provided to neuromuscular research has changed our lives infinitely,” Brodie says. “We have seen directly, even from the information we received initially, how far medicine and therapies have come in as little as 10 years. Ben has great doctors who are pushing the envelope to find the next thing – a treatment, therapy or cure. The funding from MDC specifically enables them to do that research and take those chances.”
Being diagnosed with a neuromuscular disorder is very difficult and often shocking. Your mind races between practical concerns and anxious thoughts: what treatments are available? What will happen to me in the next five or 10 years? Who can give me the answers I can trust? By donating to MDC today, you are ensuring families have the answers they desperately require, ensuring hope in the months and years to come. You can help provide clarity and comfort to a family during that difficult time.
Thanks to improvements in neuromuscular treatments and therapies, today, Ben is an active six-year-old who is able to walk, run and climb. And while Amanda and Brodie are still concerned with what the future holds, they know that Duchenne is a very different disease now, compared to 20 years ago. “Ben has a very serious disease and kids still die from it, but Duchenne is not the disease it used to be. DMD comes in all shapes and sizes, which is thanks, in large part, to how far medicine has come. It is a heavy load to carry, but it would be a lot heavier without the support of MDC.”
Your generosity today will help support MDC’s programs and services, while also investing in critical neuromuscular research. Together, we can provide hope, change the face of muscular dystrophy and other neuromuscular disorders, and improve the outcomes now and for future generations. But we cannot continue this important work without your support.
“Understanding the support that MDC provides to Canadians is huge,” Brodie says. “There is a group of people – the MDC village, that are working day and night on behalf of my family. It affects our day-to-day life and I only see some of it – there is so much work happening beyond the support they provide to our family.”
Please consider making a gift today that will help countless Canadians right now. You can change the future and give hope to future generations.
“I’m happy to report, as of a couple weeks ago, we picked up the keys to our wheelchair accessible van! We’re very much looking forward to making use of the warm weather to have some adventures with our newfound mobility!”
“We both really appreciate your assistance and thank you again.”
For many, the birth of a child is an exciting, and joyful event. Freya’s birth was no exception. Born last year, Freya was small, beautiful, and one of the first babies to be screened for spinal muscular atrophy (SMA) in Alberta.
In 2020, MDC began work to positively influence policy change, and get SMA included on all existing provincial newborn screening panels across the country. We’re nearly there, as today more than 75% of regions across Canada are offering this life-changing test. This is a huge step towards securing early diagnosis and access to treatment for the next generation of Canadians.
By making a gift today, you can help ensure Canadians of all ages have access to early diagnosis and treatment options.
“When Freya was a few days old, we were called in to get confirmation testing done on her, and her SMA diagnosis was confirmed when she was just two weeks old,” says Taylor, Freya’s mom. “The whole process was quite simple and quick. Once diagnosed, Freya was quickly approved for treatment which she received at 29 days old.”
One in 10,000 babies are born with SMA each year in Canada. Without early diagnosis and access to treatment, many infants will not live past the age of two. Thanks to your gifts, we are close to ensuring all babies across the country, like Freya, are screened and receive treatments that have life-changing results.
Today, Freya is an active toddler, exhibiting no signs of SMA. She is walking, running, climbing and talking like any other child her age.
Your gift today will enable MDC to continue advocating for improved diagnosis and treatment options, ensuring that all Canadians affected by a neuromuscular disorder, regardless of type, have access to the support and treatments that are right for them. Donate today to make a life-changing impact.
“Freya is a happy and healthy child, and I could not imagine what our life would look like if she were not given genetic, SMA-testing at birth,” Taylor says. “The challenges Freya and our family face because of her disorder are very minimal, thanks to early diagnosis and treatment. And while we have had many questions since her diagnosis, the support and information we have received from Freya’s doctors and MDC have helped us tremendously.”
Imagine how you would feel if you found out that your child was born with a degenerative, incurable disorder that would affect their quality of life. Now, imagine that they never received that diagnosis, delaying their access to life-changing treatment by years.
When you donate to MDC, you can help influence leaders to address gaps in our healthcare system, giving people living affected by a neuromuscular disorder a voice and improving their quality of life.
“The work that MDC put into advocating for SMA newborn screening is so important to so many families, and the only reason my family’s life is the way it is today,” Taylor says. “Many families do not have knowledge of the diagnosis or don’t know what they will need in order to give their children the best options in life. I cannot express the amount of appreciation I have for the work MDC put into getting SMA included in newborn testing!”
MDC is working hard to bring positive change to our community and to support the next generation of Canadians. But we need your help.
It takes just one generous act to change our country – and our future – for good.
Christina was twelve years old when she started to experience weakness in her legs. She struggled to get up off the floor and just climbing stairs became very hard. Sometimes, her legs would give out entirely.
As an active and energetic youth who was involved in many sports, Christina kept making excuses for her sudden change in abilities. “I’m just being clumsy,” or “My legs are just not strong enough”, she said.
As her muscle weakness continued to progress, Christina was referred to a specialist. After several tests and visits, she and her family received life altering news.
Christina was diagnosed with Limb-Girdle muscular dystrophy.
Finally, Christina and her family had the answers they so desperately needed. Initially relieved to finally have an explanation for her change in ability, her diagnosis led to many more questions— questions that no one seemed to have the answers to.
“My parents and I had never heard of neuromuscular disorders before,” she says. “This was a new world to us. There were a lot of questions and tests and doctors weren’t able to give us clear information about what this would mean for me going forward. It was hard to get answers to these really important questions.”
We need your support now to ensure people like Christina and her family have access to the resources they need. Someone to answer questions and to act as a guide along the way. Your gift will help break down barriers.
When a Canadian is diagnosed with a neuromuscular disorder, we know they will need a lot of support and services. But the systems around us – provincial healthcare, private insurance, and government policy – aren’t set up to give that kind of full support. These systems are also difficult for people to navigate. So that’s why we’re here – to fill in the healthcare gaps and help people find their way through these systems.
MDC has a full spectrum of programs, services, and supports for the thousands of Canadians of all ages living with a neuromuscular disorder. Plus, we invest in transformative research to work towards more answers, therapies, and hopefully, potential cures.
Please consider becoming a monthly donor today. Monthly donations provide ongoing support, allowing MDC to be nimble and respond to immediate and urgent priorities – like the needs of our clients and emerging, promising research.
While Christina still doesn’t have all the answers to her questions, she knows that MDC is with her every step of the way and that research plays an important role in her quality of life. Christina emphasizes that even without a cure, the diagnosis itself was crucial.
“As hard as the diagnosis may be, education is one of the most important pieces,” she says. “It is a big step in accepting your diagnosis and leading the best life possible. You will have to advocate for yourself, and being informed is one of the best ways you can do that!”
Please renew your commitment to MDC today by making a monthly gift. Your support helps provide Canadians affected by neuromuscular disorders with answers to their most important questions. By making a gift today, you will provide access to the critical information they need to make informed decisions about their health.
Donors like you make MDC’s support of individuals and families possible. Your generosity today will help eliminate the barriers that keep Canadians affected by neuromuscular disorders from reaching their full potential.
Today, at 35 years old, Christina’s neuromuscular disorder plays a big part in how she moves and operates every single day, but it doesn’t stop her from living her best life. As a self-described social-butterfly who enjoys travelling and going to concerts, Christina credits MDC with helping her have such a positive outlook.
“MDC has played a very important role in who I am today. It has given me the tools to connect with people that are affected like me,” she says. “It has educated me and has made me comfortable in my own skin”.
With your ongoing support, we can help other people affected by neuromuscular disorders achieve their own goals and live their best lives, too.
With your help, we can accomplish incredible things!
As a baby, Brody wobbled when he sat unassisted, and struggled to control his legs when pulling himself into a standing position. Kelli, his mom knew something was not quite right.
And, at 20 months old, Brody saw his first specialist – the start of a three-year journey in search of his diagnosis. After meeting with half a dozen doctors, completing countless medical tests, and travelling hundreds of kilometres across Alberta, Brody was finally diagnosed with Duchenne muscular dystrophy at five years old.
Kelli says, “I don’t think any parent can prepare themselves to hear that their child has a progressive, incurable disease with no remission. It’s the most helpless feeling in the world!”
Through MDC Kelli, Brody and their family now have access to the resources they need. Brody’s school has hosted learning and educational sessions for teachers and classmates with MDC as their partner and as a family, they join our retreats to meet other families affected by Duchenne muscular dystrophy.
Donors make MDC’s support of families possible. Your gift today will provide much-needed support and resources to your neighbours in their time of need.
Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.
Because of you, we can partner with families in your community who need it most.
At four years old, Elvin had great difficulty walking and fell down frequently. Concerned, his parents took him to a specialist in Toronto, where he was diagnosed with Duchenne muscular dystrophy.
The youngest of four children, Elvin relies heavily on his family for support with daily activities including bathing, and going up and down stairs. His mom, Doreen has been one of his biggest supporters and champions.
Then, a few years ago, Doreen had a stroke. Devastating to the family, the effects of the stroke mean that Doreen is unable to support Elvin as his primary caregiver. Looking for help, they registered with Muscular Dystrophy Canada (MDC).
Through MDC’s life-changing programs, Elvin now has access to a wheelchair lift allowing him to come and go without relying on his family to carry him up and down stairs. This lift lets Elvin be more independent and gives his family a break from the physical demands of caring for him.
Your gift today will enable MDC to continue helping families, like Elvin’s, enjoy greater independence, and improved quality of life.
Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.
Because of you, we can partner with families in your community who need it most.
For years, Elude complained of pain in his legs that would not go away and after several doctor’s visits, he was diagnosed with oculopharyngeal muscular dystrophy. As his disease progressed, it became increasingly difficult for Elude to complete everyday tasks and his wife, Gaétane stepped in to support.
For more than 30 years, Gaétane has struggled to take care of everything on her own including completing daily chores, caring for Elude and maintaining their home in New Brunswick. Then eight years ago, Elude’s condition deteriorated. Thankfully, one of their nurses told them about Muscular Dystrophy Canada (MDC).
“We asked for help to purchase equipment including a machine that helps to clear Elude’s throat, and mobility devices like a walker and a chair lift,” Gaétane said. Having access to these devices greatly improves Elude’s mobility, giving him greater enjoyment and quality of life.
MDC also supports caregivers, like Gaétane, who receives a few hours of domestic help each week, giving her a much needed break to recharge. Those few hours ensure she is her best self when at home with her husband.
Your gift today will enable MDC to continue delivering life-changing programs that help families, like Elude and Gaétane, enjoy greater independence and an improved quality of life from the comfort of their own home.
Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.
Because of you, we can partner with families in your community who need it most.
At eight years old, Lucas was diagnosed with centronuclear myopathy (MTM1), which causes severe muscle and lung weakness and greatly affects his mobility. Because of his disorder, Lucas uses a wheelchair, and relies heavily on his family, especially his mom and dad, Sarah and Arnaud, for support with daily activities including personal care and going up and down stairs.
As Lucas got older, and his disorder progressed, it became more difficult for Sarah to lift him to the bathroom or carry him upstairs to his bedroom. Left with the difficult task of modifying their home in Quebec to meet Lucas’ needs, they registered with Muscular Dystrophy Canada (MDC), who stepped in to support these much-needed renovations.
With support from MDC, Sarah and Arnaud equipped their home with an elevating platform and a power lift, providing Lucas with improved mobility and quality of life.
Through MDC’s life-changing programs, Lucas can now move around his home freely without needing to rely on his family as much. This equipment lets Lucas be more independent and gives his family a break from the physical demands of caring for him.
Your gift today will enable MDC to continue delivering life-changing programs that help families like Lucas, Sarah and Arnaud, enjoy greater independence, and improved quality of life.
Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.
Because of you, we can partner with families in your community who need it most.
When Johnny began experiencing weakness and muscle deterioration, he brushed it off as a sign of aging. As an athlete, who enjoyed running and golfed regularly, being diagnosed with Limb-Girdle muscular dystrophy in his late 40’s was life changing for him and his wife, Carla.
At first, Johnny’s biggest issue was climbing stairs, until his disorder had progressed to the point where he not only couldn’t climb stairs anymore but, also had great difficulty standing up and sitting down. Left with the difficult task of modifying their home in British Columbia to meet Johnny’s needs, they registered with Muscular Dystrophy Canada (MDC).
With support from MDC, Carla and Johnny were able to equip their home with several ramps. MDC also provided Johnny with leg braces, which Carla says, “he wears all the time! The leg braces provide him with a lot of support and enable him to do things that he otherwise wouldn’t be able to do.”
Carla and Johnny feel grateful for the support of MDC. Carla says, “all interactions that Johnny has with Sharon [MDC’s Service Specialist in British Columbia] are so kind and supportive. She listens to him, and is so caring. It’s like they’re friends. There is no cure for muscular dystrophy and although we have wonderful doctors, there is no other support for us, other than MDC!”
Your gift today will enable MDC to continue delivering life-changing programs that help families like Johnny and Carla, enjoy greater independence, and improved quality of life.
Your generosity today means that MDC clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts on their behalf.
Because of you, we can partner with families in your community who need it most.
