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    1. Patient and Parent Support

    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:

    • Request a copy of our DMD Family Folder
    • Guides to Duchenne Muscular Dystrophy
    • Advice for newly-diagnosed parents from DMD parents
    • Stories from DMD parents

    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

     

     

     

    Published: 3rd December, 2019

    Updated: 13th January, 2020

    Author: Nick Crossley

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    DMD Hub

    DMD Hub

    Expanding Clinical trial capacity Read more

    Published: 1st March, 2015

    Updated: 26th June, 2019

    Author: Nick Crossley

    Attend our FREE Information Days

    Attend our FREE Information Days

    Please join us at our free Patient Information Day Read more

    Published: 27th July, 2017

    Updated: 13th October, 2020

    Author: Nick Crossley

    Comments: 1

    Impact Report 2020

    Impact Report 2020

    Despite the challenges of 2020, Duchenne UK has achieved much and we hope you find the impact report that we are releasing today, uplifting. Thank you for your support and we wish you a safe and bright 2021. Read more

    Published: 23rd December, 2020

    Updated: 27th January, 2021

    Author: Nick Crossley

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    Registered Charity No. 1147094. © 2020 Duchenne UK. All rights reserved.
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