Our message for you

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.

Both of us, our sons and our families, have lived with this disease since 2011. It has caused us unspeakable pain and, at times, nearly broken us. But it has also 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 children. And, in time, you will too.

Diagnosis can be an emotionally devastating time. A time when the hopes, dreams and plans that you had for your child and your family, now seem to have no place. Instead, you’re faced with 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 hear about a global army of doctors, scientists, researchers and drug developers who are absolutely committed to fighting this disease for all our children.

There are many reasons for optimism now. Promising new therapies are being tested. Many more are being developed.

Right now, it’s probably difficult for you to think past your child’s diagnosis. We know how hard it is to get this news.

So, we want to help you cope with the diagnosis and plan your child’s care. We’ve worked with DMD parents to create a set of resources for you:

If you would like to speak with us, please send an email to [email protected]. We’ll arrange a time for us to meet or talk on the telephone.

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

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

Emily Crossley & Alex Johnson

Co-Founders & Joint CEOs of Duchenne UK

Latest

A set of Guides to DMD

We have created a series of guides as resources for the Duchenne community to help talk to others about DMD.
Duchenne UK supports first study to examine Edasalonexent as a potential treatment for non-ambulant patients with DMD

This will be a pilot study in non-ambulatory patients to test it's benefits.
Saracens Annual Charity Dinner

Join us on Wednesday 22nd April for an unforgettable night at Allianz Park, the home of the Premiership Champions, Saracens.
Impact Report 2019

We are pleased to share with you our Impact Report 2019. Thank you for helping us grow from a tiny patient organisation to a multi-million pound catalyser and funder of research.