Muscular Dystrophy UK is launching the West Midlands Neuromuscular Sahara Group.
The new group’s launch follows the success of our information and support day in February which saw over 20 people come together to decide how they want these meetings to develop and what the focus of the group should be.
Naima Ali-Khan (pictured above) is a student nurse and Muscular Dystrophy UK ambassador whose two teenage daughters have SEPN1-related myopathy. She is also one of the four women who are the driving force behind the West Midlands Sahara Group. Naima writes why people should get involved below:
Living with muscular dystrophy is fraught with challenges. Knowing where to start and where to get the right information and support is important in successfully managing these conditions.
I want to use my experience to help other families out there who are living with the overwhelming impact of muscular dystrophy. Meeting others with a shared experience gives you a powerful sense of community.
David Stephenson, Neuromuscular Policy and Engagement Officer at Muscular Dystrophy UK, said:
Muscular Dystrophy UK is really excited to be working alongside families to set up the West Midlands Neuromuscular Sahara Group.
People tell us they really benefit from spending time with other families affected by muscle-wasting conditions.This group will help people realise that they are not alone and there are other people locally who know what they have been through and can offer support.
The Sahara Group are now planning a family event in summer which will:
- Offer an opportunity for families affected by muscle-wasting conditions to meet other people in similar circumstances
- Provide families with information about the support we provide and how to access local resources
- An opportunity for young people affected by muscle-wasting conditions to relax and enjoy themselves in a non-clinical setting
This West Midlands Neuromuscular Sahara Group follows the success of the Yorkshire Neuromuscular Awaaz Forum which was set up in 2014 by Muscular Dystrophy UK and Leeds General Infirmary for Yorkshire families affected by muscle-wasting conditions.
If you would like to find out more about the West Midlands Neuromuscular Sahara Group or Muscular Dystrophy UK’s other activities in the region then please get in touch with our campaigns team at: campaigns@musculardystrophyuk.org