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You have the power to help families feel less alone. Donate to education and support programs today and change the way Canadians, like the Power family, cope with the devastating effects of Duchenne muscular dystrophy:

My name is Lorrie Power. I live in Sydney, Nova Scotia, and I am the mom to three wonderful children. Like many families, we have a lot in common. We love exploring nature and we are all kind of shy, except when it comes to things, we are passionate about. Another thing we all share is the life-altering effects of my 12-year-old son, Alex’s Duchenne muscular dystrophy diagnosis. While we try our best to give him the most normal childhood possible, every single thing we do is distorted by this lens of “Is it safe? Is it accessible? Can he participate fully, and how can we keep him from getting hurt?”

Duchenne is not an individual’s disease. It affects every person who knows, loves and cares for the boys who are dealing with its debilitating symptoms. At only 15 and nine-years-old, my daughters’ entire lives have been filtered through questions and concerns about Duchenne. Because of every beach visit cut short and every trail not tracked, their number one concern is doing everything at a pace that works for Alex – or, as is often the case, not doing it at all.

Duchenne is a disease that impacts entire families. That’s why Defeat Duchenne Canada prioritizes the development of resources that bring hope, knowledge and courage to everyone fighting alongside our boys.

When Alex was late hitting his developmental milestones, we just thought he was a late bloomer. After a few months of physiotherapy, his therapist suggested we get genetic testing. The blood work showed that his muscles were being damaged and, soon after, we found out the cause was Duchenne. In that moment, our whole world was turned upside down. I had never even heard of the disease before and, all of a sudden, I was forced to try and grapple with my son having this horrible, life-limiting disorder. Worse still, we received absolutely no additional information from our health care team regarding what to do next.

The trauma our family went through during the diagnosis stage showed me exactly why families need Defeat Duchenne Canada.

At a time when you are completely consumed by grief, this organization helps you realize there are other people who know exactly what you are going through. These moms, dads and kids are fighting the same fight you are about to take on. They are in your corner and ready to help get you back on your feet.

Most moms and dads understand the incessant desire to know every fact that may affect how best to care for our kids. With any cough or suspicious rash, we immediately type in the symptoms we see, desperate for a resolution to our loved one’s suffering. When it comes to Duchenne, there is no readily available Google answer that can “fix” our sons. But rather than searching the Internet or going from doctor to doctor and clinic to clinic to figure out what to do next, Defeat Duchenne Canada puts all the information families need in one place.

What I have learned through Defeat Duchenne Canada has helped my family feel better about the decisions we are making for Alex. That inexplicable sense of doing right by your child is really all a parent can hope for. This is a charity that invests in online resources and in-person conferences that create the opportunities for lifelong connections and real-time conversations because they recognize the need to shed light on what will likely be the darkest moments a family will ever experience. You can’t really put into words how necessary that is and how much we depend on donors like you to keep it going.

Your gift will empower Defeat Duchenne Canada to create safe and reliable spaces for families who deserve to feel heard, seen and informed.

As Alex’s mom, I have experienced, firsthand, the ways Defeat Duchenne Canada changes lives. The flood of relief I felt when we realized there was a place to go for answers is inexplicable. Now, as a member of Defeat Duchenne Canada’s Family Advisory Committee, I get to share that sense of empowerment with families across Canada. We gather together – in person and online – during Family Forums and webinars that make evidence-based best practices and world-renowned experts easily accessible. 

During these events, parents, siblings and sons with Duchenne meet with one another, form meaningful connections and have the chance to talk through the most difficult aspects of dealing with Duchenne. We get to hear from scientists and care practitioners who are on the frontlines of the fight against Duchenne and, hand-in-hand, we walk with our heads held high on the complicated journey we’ve been tasked with.

Sincerely & gratefully,
Lorrie and the Power Family

I can’t emphasize enough the toll this disease takes on their bodies, their minds and our hearts. Right now, there is no way to stop Duchenne’s progressive nature, but that does not mean we will give up hope. Amidst all the harsh realities of this disease, your donation can ensure Defeat Duchenne Canada remains a shining light of information, solace and progress.

Make a donation to Defeat Duchenne Canada and know that you are providing tangible benefits to parents, like me, and the sons we want to protect and uplift. Your gift could help save a family from feeling completely overwhelmed, lost and alone. You can be the reason they feel renewed and reenergized, ready to face another day with the courage and conviction they need. I can’t say enough how much I appreciate you taking the time to read our story and to share your kindness with my son, Alex.

Your gift will help Defeat Duchenne Canada maintain and extend the transformational benefits of our educational programming, including the following initiatives:

Best of all, thanks to your generosity, we are able to offer these programs to families at no cost. This is fundamental to our organization’s way of being – because, amidst everything they are already going through, these families deserve support – with no strings attached.

Every dollar you donate will be matched up to $75,000.

We are proud and grateful to be able to offer this amazing matching opportunity until December 31, 2022, and it has only been made possible thanks to a group of donors who want the very best for families like ours. Pick up their challenge and carry it forward toward a brighter tomorrow for Canadians who need you today.