In 2014, Muscular Dystrophy UK and Leeds General Infirmary developed the Yorkshire Neuromuscular Awaaz Forum, a new group for Yorkshire families affected by muscle-wasting conditions where they can meet and support each other.
The idea for Awaaz came from two mums, Nazma Chowdury from Bradford and Anisa Kothia from Dewsbury, who both have sons with Duchenne muscular dystrophy and wanted to get to know other families from South Asian backgrounds affected by muscle-wasting conditions, who were living in their area.
The aims of Awaaz
- To enable families affected by muscle-wasting conditions to support and advise each other
- To raise awareness of the issues affecting people and the profile of muscle-wasting conditions
- To help break down the barriers of language and culture that may prevent some families getting the best support available
- To meet as a support group on a regular basis and to encourage members to build a network that can support each other informally on an ad hoc basis.
Anisa Kothia from Dewsbury, whose six-year-old son has Duchenne muscular dystrophy, said:
Being able to speak to other parents who can relate to you and understand exactly what you are going through can be a huge source of support and comfort. We have been working hard to identify ways to help South Asian adults and children affected by muscle-wasting conditions in particular, to work for a better future together. Our Awaaz group seems like the perfect way to bring families together. We want to build a strong community where we can all support and reach out to each other.
Nazma Chowdhury from Bradford, whose eleven-year-old son also has Duchenne muscular dystrophy, said:
I cannot tell you enough how much this forum will mean to people. It can be incredibly isolating having a child who has a condition that people know little about. Navigating the health system and negotiating all the NHS services can be extremely daunting. We hope this new forum will be the missing link for many families in the area. This group, as well as being a community for families, will help to breakdown the barrier of language and culture that may prevent some people getting the best support available.
Following this success, Muscular Dystrophy UK is now looking to set up new groups for people from minority groups in other locations across the country.
If you would like to find out more about the Awaaz group, or if you are interested in being a local diversity champion and setting up a group in your area, please get in touch with Bobby Ancil at Muscular Dystrophy UK: