Dear Parents & Friends

If you’re reading this, the chances are that either your child, or a child close to you, has been diagnosed with Duchenne Muscular Dystrophy.

Our sons were both diagnosed age 3. This is Alex with her son Jack and me, Emily with my son Eli.

Alex and I have lived with this disease for 5 years now. It has broken us, at times, destroyed us, and caused us unspeakable pain. But it has united us. And it has made us strong. And it has made us fight for our sons in ways we never thought possible. And yes, we are able to smile, and laugh, and enjoy life with our boys.

And, in time, you will too.

But diagnosis can be an emotionally devastating time. A time when the hopes, the dreams and the plans that you had for your child and your family, now seem to have no place. Instead, replaced by a new reality, of grief, despair, loneliness, a feeling of losing control, a deep sadness for your child, and the end of a carefree life.

But the more you learn about Duchenne Muscular Dystrophy, the more you will learn about a global army of doctors, scientists, researchers and drug developers, absolutely committed to fighting this disease for all our children. There is so much reason for optimism now. Promising new therapies are now being tested on children. Many more are coming through.

Yes we’ve had some tough times in this community. But we can learn from those times. And be better. And be stronger for the future. Because we owe it to our children. Because they deserve safe and effective treatments. And they need them now.

Use our website to help you navigate the early months of diagnosis. You will find lots of information to help you; information on Duchenne and what causes it, information on steroids, bone and heart health, physiotherapy, what to ask your doctor, and what drugs are in the pipeline.

Understanding your child’s condition will empower you, and will give you back a sense of control. And it will help you lobby for your child and get them the best possible care.

We believe in the life changing power of science and medicine to change lives. And of the strength of communities like ours to move mountains. 

Together we can change the future for everyone living with Duchenne Muscular Dystrophy,