About Us
Our charity was set up when 2 of our sons, Gary and Paul, were diagnosed with RFC 4 – a rare muscular dystrophy that is currently only recognised in 11 people throughout the world!
Immediately following their original diagnosis, we did several fundraising events for Muscular Dystrophy UK; a little later we also fundraised for the Muscular Dystrophy Support Centre in Coventry as they had helped Gary. Finally, we included a small charity in Dorset – Hydro Muscles who helped Paul following his diagnosis by providing hydrotherapy.
We needed a way of being able to raise funds for all 3 charities whilst at the same time finding ways to help adults living with rare MDs. Muscular Dystrophy Fundraising was born!
Chris & Martyn Evans
What do we do?
We work in partnership with other organisations to support adults living with rare forms of muscular dystrophy, as well as the families and carers who support them.
Through our partnership with the Emotional Respite Disability Counselling Service, we help provide access to much-needed emotional support and counselling. Living with a rare muscular dystrophy can bring uncertainty, challenges and emotional strain, and sometimes having someone to talk to can make a real difference.
Our aim is to provide a little extra support when it is needed most — helping people feel listened to, understood and less alone, while supporting their emotional wellbeing and quality of life.
By working together, we hope to ensure that adults affected by rare muscular dystrophies and their carers have access to the support, advice and opportunities they deserve.
Ultimately, we want to help people live with greater independence, dignity and confidence, while offering hope, reassurance and a helping hand to families along the way.