Patient care & support

DMD Siblings Network - Meet Roan

Recently, with the support of Duchenne UK, Roan has set up the DMD Sibling Network. This will initially act as an online place where the siblings and close friends (age 15+) of Duchenne patients can come, connect and hopefully create long lasting ties.

We asked Roan a few questions to learn more about the network and discuss what we're hoping to achieve:

Roan, tell us a bit about yourself? 

I am a 19 year old History student at the University of Warwick. I love to gym, eat and irritate my friends.  

Why did you set up the DMD Siblings Network?

My younger brother Raul (17) was diagnosed with DMD when he was 4. From a young age I always just thought itd make sense to connect with other siblings experiencing a similar way of life to myself. 

What are you hoping the network will do?

I aspire to create a network with a significant following- one where long-lasting friendships can be formed naturally and in the future socials can be held. I do understand people’s hesitation to be involved with something like this- what I’d like to emphasis is in no way are you obligated to talk about your feelings, emotion or your home life- it is not a therapy/counselling service. My aim and belief is that through engaging with each other and being able to relate to one another’s situation something original and highly beneficial will be formed. 

How can people get involved?

You can DM me on instagram @dmdsiblings
Email at [email protected] or message me via the DMD Sibling Network Facebook page


What is Duchenne Muscular Dystrophy?

Duchenne muscular dystrophy (DMD) is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK?

Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. As the leading Duchenne charity in the UK, we connect the best researchers with industry, the NHS and families to challenge every stage of drug development to make the incurable, curable. Together, we will find treatments and cures for this generation of patients with Duchenne.

Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell. 

We need your help, because we need to keep funding promising new research.

How to donate?

Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

  • Direct Debit – Duchenne Direct
  • Individual Donation – Donate
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
  • Take part in one of our fundraising events – Events
  • Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.

For more information visit www.duchenneuk.org

Published on 17 November 2020

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